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Pamela Paul

It Takes a Lifetime to Survive Childhood Cancer

By Pamela Paul

Opinion Columnist

One night in 1981, in the middle of bath time, Marty Gonzalez noticed a strange glow that seemed to emanate from inside one of the eyes of her 9-month-old daughter, Marissa.

“It was really bizarre,” Gonzalez recalls. “It looked like a cat’s eye — like I could see all the way through.”

Though Marissa’s pediatrician in Long Beach, Calif., assured Gonzalez it was nothing, she sought another opinion.

While teaching her sixth-grade class, Gonzalez anxiously awaited news from her mother, who had taken Marissa to see a pediatric ophthalmologist. By lunchtime, with still no word from her mom, Gonzalez called the doctor directly. “I think it’s cancer,” the doctor told her.

Marissa, it turned out, had retinoblastoma, or Rb, a rare but aggressive cancer that almost exclusively affects children. Rb makes up only 3 percent of all pediatric cancer cases, which translates into about 300 children in the United States a year. Marissa had tumors in both eyes and needed immediate treatment: cryotherapy to freeze the malignancies and radiation to destroy them. Two days later, Marissa and her mother were on a flight across the country to see a specialist in retinoblastoma at Columbia University.

For Gonzalez, it all happened so fast. She was given no information on survival rates. She had no idea what would happen to Marissa’s vision if she lived. She didn’t know what the radiation, which would need to be administered every day for a month, might do to Marissa’s developing brain. She just wanted her daughter to live.

‘A Murderous Time’

Cancer is understood essentially as a disease of aging. Our body makes its own toxins, oxidants that damage our DNA. With every bite of food, every breath of air, each cell that divides, come tiny mutations that then accumulate. While most mutated cells are eliminated, at some point, a key cell continues to multiply uncontrollably and cancer develops. We essentially poison ourselves over time.

But childhood cancer, which often originates in utero, is fundamentally different in that it can progress before a child even begins to age. For most fetuses, the process of rapid growth doesn’t lead to cancer. But with all that cell division going on, occasionally there are mistakes. When those mistakes take place in certain cells, they’re like a ticking bomb hidden away in the fetus, often somewhere in the immune system. Those cells may stay hidden for years. Leukemia, the most common childhood cancer, manifests most frequently when children are about 3 or 4 years old and their immune system becomes more developed. But the originating cancer cell has been there all along.

For decades, a diagnosis of cancer in a child was a death sentence of the worst kind. Fewer than half of the children diagnosed in the 1960s were still alive five years later.

Too many children still die of cancer, which is the second leading cause of death in kids ages 1 to 14. But the treatment of pediatric cancer is also considered one of modern medicine’s success stories. Over 85 percent of children diagnosed with cancer survive. There are currently about 500,000 survivors of childhood cancer — approximately one in every 750 people — alive in America today. These statistics may give comfort to the parents of the roughly 15,000 children who face a cancer diagnosis each year.

But the progress masks tough realities. That 85 percent survival rate for cancer is measured at five years. For a 76-year-old woman diagnosed with breast cancer, five years can feel like a reprieve. But what does a five-year survival rate mean for a toddler? And what are the long-term effects of cancer treatment — which can include radiation, chemotherapy, surgery, amputation and reconstruction — on the developing body and mind?

Fending off early death is a victory. What the next four or five decades are like remains a challenge, for patients and families and for doctors. Childhood cancer is rare , and research into its treatment remains underfunded; only 4 percent of federal funding of cancer research goes to pediatric oncology. Surviving cancer can affect a child’s entire developmental trajectory — physically and psychologically. There’s risk for hormone dysregulation and infertility, uneven limb length and lost muscle mass, hearing loss and brain damage.

A boy treated with radiation to the pelvis might retain a child-size pelvis and penis even as a grown man. A girl might have normal development in one breast and nothing in the other. Dr. Christopher Recklitis, the director of research and support services at the Perini Family Survivors’ Center at the Dana-Faber Cancer Institute in Boston, said some young women are surprised to be told at age 25 to “check their ovarian function because they may only have a few more years of fertility left. And they’re like ‘ What are you talking about?’”

Clearly, a five-year goal post isn’t enough. Success in pediatric cancer must be rethought not as a short-term cure but as a lifelong recovery. “Our goal should be the next 10, 20, 30, 40 years,” said Dr. Douglas Hawkins, a professor of pediatrics at the University of Washington and chair of the Children’s Oncology Group, a coalition that unites the work of over 10,000 experts.

It’s taken decades to get to that challenge.

In 1956, Dr. David Nathan, president emeritus of the Dana-Farber Cancer Institute, began his oncology career at the National Cancer Institute. He administered chemotherapy to some of the earliest pediatric patients to receive the treatment. In the first test group, Nathan treated 50 children without a single survivor. It was, Nathan recalls, “a murderous time.”

“We made the kids so sick that most of the kids died from the therapy,” Nathan told me. “They died of infection, they died of bleeding, they fell apart.”

For Nathan, it was extremely difficult to cope. By his own admission, he lacked what he described as the “will” necessary to handle the trauma. “It took a certain personality that I just didn’t have,” he told me. He would go home and say to his wife, “I just killed another kid.” He went into adult hematology for 10 years to escape. “I didn’t want to have anything to do with it,” he said.

In the early days of chemotherapy, knowing just how toxic chemotherapy agents were, doctors hesitated to treat patients with more than one agent simultaneously. How could you cause so much damage to a person who was already so sick? The answer was that you had to: If patients got only a single form of chemo, the cancer would mutate past it; only attacking the cancer with multiple agents at the same time prevented it from adapting. This multi-agent assault on the system is what causes people to suffer so palpably during treatment — the vomiting, the hair loss, the systemic illness we’ve come to recognize in cancer patients.

Dr. Sidney Farber, the famed pathologist and pioneer in childhood oncology, found it especially hard to give such harsh toxins to children, instead arguing that single agents be administered sequentially. Nathan and Farber, working in the field at the time, fought each other terribly over the best approach. Farber could not bear the idea of being responsible for killing children in an attempt to treat them. “I will never injure seven children to save three,” Nathan recalled Farber saying. “But right now you’re saving none,” Nathan replied. “He would look at me savagely,” Nathan said.

Once multi-agent chemotherapy was shown to work in children, the feat of keeping the child alive was in itself considered a success, no matter how intense or traumatizing the treatment. For a long time, the guiding principle was, the more you could do to save the child, the better. Anything for a cure.

Often this meant radiation in addition to chemotherapy. Any parent today knows that you should limit your child’s exposure to radiation. But in the early days of pediatric cancer treatment, radiation was often considered vital to survival. What this radiation did to a growing body and brain was unknown.

We now know what the toll of radiation can look like, which is one reason it’s used much less often. Dr. Lisa Diller, the director of the David B. Perini Jr. Quality of Life Clinic for Childhood Cancer Survivors at Dana-Farber, recalled that when she was a young doctor in the late 1980s, she saw a child who had been treated for leukemia at age 2. “She had three separate secondary tumors, two different cancers as well as skin cancer, all from the radiation. I had this feeling of, ‘What the heck? What did we do here? Did we cure this child?’”

But while certain cancers, notably neuroblastomas, which develop in nerve cells, remain stubbornly difficult to treat, it’s hard to deny the efficacy of these more aggressive protocols in curing children of their primary cancer. In the early 1960s, for example, 5 percent to 10 percent of children with acute lymphoblastic leukemia were successfully treated. Today, that figure is around 90 percent. Over time, doctors refined their protocols. When a number of leukemia patients later developed brain injury, doctors cut back on radiation in areas that could reach the developing brain.

Marissa Gonzalez began treatment in 1982, when radiation was still commonly used to treat retinoblastoma. Initially, each time her eyes were radiated, she had to be carried onto a table and forcibly immobilized so that the radiation could precisely target the tumors growing inside her eyes. By the end of the month, Marissa was so accustomed to it, she was climbing onto the table herself.

But a month’s worth of treatment failed to stop the more aggressive tumor growing in Marissa’s left eye. This meant the worst-case scenario: Her eye would need to be removed. Afterward, a pathologist would determine whether cancer had reached the optic nerve, threatening the brain; the family would have to wait several weeks for the results.

“I remember just wailing,” Gonzalez said. It was a month before Marissa’s second birthday.

Unfortunately, treatment didn’t end with the removal of her left eye. Marissa’s earliest memory is of sitting in a hospital waiting room, her eyes dilated, filled with dread. She was around 4 years old, waiting for yet another procedure; she vomited from anxiety before and afterward.

From an early age, Marissa taught herself not to cry because she could see that it upset her mother. When she blew out the candles on her seventh birthday, “I wished for no more tumors,” Marissa told me. “How sad is that?”

On the bright side, Marissa’s vision remained pretty decent, roughly 20/40 in her remaining eye. Because her left eye was removed at such an early age, her brain was malleable enough to compensate. Despite wearing a prosthetic eye, she learned to ride a bike and, inspired by Nancy Kerrigan at the 1992 Olympics, took up competitive ice skating. For the next seven years, she woke up at 5 a.m. every day for practice. Out on the rink, vision and cancer never came up. “Ice skating was a sanctuary — nobody teased me because my eye and face looked different,” she said.

But as she got older, the bones in her face near her temples, where radiation had beamed its rays, stopped growing along with the rest of her face. Her eyelid drooped over the prosthetic eye. By middle school, she said, she was often called One-Eyed Willie. It wasn’t until she switched schools in high school that she made a group of close friends. At 17, Marissa enrolled at the University of Southern California, where she majored in communications, hoping to become a journalist.

Retinoblastoma is “like a microcosm of cancer treatment over the last 150 years,” said Dr. Michael Dyer, chair of developmental neurobiology at St. Jude. In 1809, doctors realized this kind of tumor was starting in the eye. Shortly thereafter, the first surgeries were attempted, well before the development of anesthesia and the earliest attempts at radiation in 1903. In the 1950s, a derivative of mustard gas from World War II was used as one of the first chemotherapeutic agents to treat eye cancer, as it had been for other cancers, in children.

In 1971, a cancer geneticist named Alfred Knudson proposed that people with retinoblastoma carried a mutation in a gene that suppressed tumors. The existence of these tumor-suppressor genes was a new concept, and it transformed the field of cancer genetics. In 1986, when researchers were able to identify the precise gene in question, it became the first tumor-suppressor gene to be identified.

Retinoblastoma also shows us what the future of cancer treatment may look like. Today, survivors can have their children tested for the gene, and scientists can screen for the 30 percent to 40 percent of kids who are likely to get it because they carry the mutation from their parents. Doctors could identify it early enough to treat it with laser therapy. Of course, telling parents their newborn has a 90 percent chance of developing an eye tumor is complicated.

To avoid the side effects of systemic chemotherapy, chemo can now be injected into the femoral artery in the leg through a long tube that goes directly into the vessels of the eye. Other new techniques involve injecting the drugs into the tissue surrounding the eye or directly into the eye. At St. Jude, doctors are trying to save at least some vision in patients with the most aggressive forms of Rb. In their most recent trial, 23 out of 25 children ended up with 20/70 vision in at least one eye. But these new treatments are extremely challenging. A few tumor cells can break off and become vitreous seeds, which float around and are difficult to target.

“The major challenge is you just don’t know what the consequences later on will be,” Dyer said. “Is this going to cause vision loss or other problems in 45 years? It just isn’t known.”

‘They Look Like 50- and 60-Year-Olds’

Doctors are trying to fill in that knowledge gap, not just for Rb but for all childhood cancers. Beginning in the early 1980s, once more childhood cancer patients were surviving past five years, researchers began focusing on the psychosocial impact of childhood cancer survival.

Initially, survivors of pediatric cancer may feel invincible. They are thrilled to be healthy again. But often, as they hit adolescence, they become newly vulnerable. A number of studies show that though most survivors do quite well, as a group they have higher levels of anxiety and depression and suicidal ideation. The school years can be especially tough on cancer survivors, many of whom look markedly different from their peers — shorter, weaker, occasionally slower. They often have prostheses or bear visible marks of their illness.

As one patient told his doctor, “I’m 24, but I’m five feet tall and I look like I’m 14.” Another said he didn’t bother dating women because “They will want a baby and I can’t have a baby.” Some are hit with a version of survivor’s guilt, comparable to making it out of a war zone: Why me? Why did I survive and so many of my peers on the cancer ward didn’t? What did I put my parents through? How must my sisters and brothers feel about the sacrifices they had to make?

But Recklitis, at Dana-Farber, also points to their tremendous resilience. “These are people who have had to work through huge challenges and find meaning in it,” he told me.

From the earliest days, specialists in pediatric oncology made a concerted effort to track their patients’ physical health over time and to work collaboratively. Because the patient population is relatively small — only 1 percent of cancer patients are children — and there are 16 major types of pediatric cancer, it’s difficult for any one research center to have enough data to make conclusions meaningful. But because the stakes are so high, a spirit of shared mission imbues the field.

Funded by the National Cancer Institute since 1994, the Childhood Cancer Survivor Study is the world’s largest resource for survivorship research. The C.C.S.S. has been tracking a cohort of 25,735 survivors diagnosed and treated between 1970 and 1999 across 31 member institutions. Those patients are showing the world what survival looks like over the long term. “What we’ve learned from them has absolutely changed how we treat new cohorts of children,” said Dr. Greg Armstrong, the principal investigator of the C.C.S.S. and the chair of the department of epidemiology and cancer control at St. Jude.

Since its inception, data from the C.C.S.S. has helped doctors fine-tune treatment. Children who had been initially treated at early ages with radiation suffered from cognitive impairment and I.Q. loss that became more pronounced as they aged. Their executive function was compromised; they found it harder to live independently and achieve employment goals. They were growth-hormone deficient, leading to decreased growth. Many were obese for reasons doctors couldn’t determine. Worst of all, the radiation caused secondary cancers; many would ultimately die of brain tumors.

It also became apparent that chemotherapy had certain delayed side effects. A common class of chemotherapeutic agents, anthracyclines, ultimately led to heart disease and heart failure. “I had 50 years of experience with this drug for leukemias and solid tumors,” said Dr. Stephen Sallan, a pediatric hematologist and oncologist at Dana-Farber. “But each dose kills some heart muscle cells. It’s inconsequential at the time, but with children, by the time they’re 35 or 45, some are going into heart failure. It’s horrible.” Among patients diagnosed in the 1970s and 1980s who passed the five-year survival mark, for example, 18 percent died of various complications in the 25 years that followed.

As the research on the physical and social effects of treatment accumulated in the 1980s and 1990s, doctors realized they were over-treating some cancers at the expense of the child with the cancer. They largely eliminated whole-brain radiation. Whenever possible, they avoided the administration of anthracyclines. They also found that a new heart-protectant drug, dexrazoxane spared the heart muscle when prescribed with anthracyclines. They started to view treatment not just as curing the cancer that was present but as preventing more problems down the road.

Coping with late-onset issues is a challenge not only for patients but also for doctors. Five or 10 years ago doctors begin to notice that when some patients hit their 30s and 40s, they looked 20 to 30 years older than they should, Dr. Kevin Krull, who studies the brain and cognitive development of pediatric cancer survivors at St. Jude, told me. Their skin and hair looked older. Their heart and lung function was that of an older person. They seemed to be aging more quickly . “We wondered, what is going on here?” Krull said. “These people were having health complications we’d expect in a 70-year-old when they’re only 40.” The medical community is now encountering survivors in their 50s and 60s for the very first time. No one knows what old age will look like for them.

Untangling these myriad factors is challenging because it’s not simply a straight line from radiation to accelerated aging. Late-onset health problems may have to do with epigenetic changes in the DNA or with physical consequences that alter behavior — leg weakness that leads to less exercise that leads to lowered cardiovascular function, for example.

Longitudinal studies like the C.C.S.S. and the St. Jude Lifetime Cohort, as well as survivorship programs, can help doctors distill those sequences of events. They also help doctors alter treatment or modify post-treatment care in order to minimize their adverse long-term effects. And they may also help isolate genetic predispositions to certain late-life complications, enabling doctors to work preemptively to lower those risks.

Sometimes it’s these late-life complications that have the greatest impact on survivors.

By the time Marissa enrolled at U.S.C. in 1998, a radiation-induced cataract, which had begun to develop when she was 9, got so bad she could no longer see the blackboard. By junior year, she had to have it removed. Though it was a simple procedure, Marissa was terrified. After all, she had only one eye left. But the surgery went smoothly, and her vision improved to 20/25. She thought her future was clear.

Over the course of 12 years, she’d had a series of reconstructive surgeries to improve her appearance. Stem cells and fat were transplanted into the concave areas along the sides of her face, making her look almost normal. She felt better than she ever had. She got a hugely rewarding job at U.S.C., her alma mater, working in special events.

But in 2018, one of the reconstructive surgeries went devastatingly wrong. Shortly afterward, still loopy from anesthesia, Marissa noticed floaters in her field of vision. Two days later, she went for a slow walk around the block with her mother, puzzling over what felt like nighttime descending.

“It was like someone had turned the lights out,” Marissa recalled. Returning to the hospital, she had what felt like an endless series of tests: MRIs, CT scans, a spinal tap. She’d suffered an optic nerve stroke. After over 100 hours in a hyperbaric oxygen tank and strong steroids, she asked a doctor, “How can I get back the vision I had?” and the doctor told her she would never get it back. Marissa sank to the floor and vomited. She now had one eye with 20/800 vision. She was 37 years old, and she was blind.

‘It’s Going to Take an Army’

How might a doctor modify a patient’s medical treatment as the person ages in order to decrease some of the known risks of long-term cancer survival ?

“Curing isn’t enough anymore,” said Armstrong, the principal investigator for the Childhood Cancer Survivor Study. “Now we have to dial back, not dial up.” This can be a tough sell to parents, particularly when it involves protocols that are still experimental. Imagine, Armstrong said, sitting down with a family and saying, “We’re going to beat this, but we want you to enroll in a study where you’re not going to use the strongest therapy.” Few parents may want to take that risk when they are laser focused on saving their child’s life. Yet decades later, data proves the payoff for children with certain cancers: More survivors from the 1990s have a longer life span because they received less treatment.

Some parents are calling for this change too — or at least for better ways to navigate treatment decision-making. A group of parents wrote a 2022 paper in the journal Pediatric Blood and Cancer essentially asking if, given the suffering, medicine has gone too far in aggressively fighting neuroblastoma, one of the most lethal cancers. Often, this involves multiple bone marrow or what are also called hematopoietic stem cell transplants, which are extremely tough — even on adults — and fraught with risks, including life-threatening infection. The arduous process of putting a child through such a painful and dangerous treatment is considered by many parents to be “an emotional nadir” in their child’s illness. Parents want to do anything they can to save their child; then they get a glimpse at what “anything” actually involves, especially when the chances of survival remain piteously low.

“To transplant or not to transplant is an enduring question in neuroblastoma parent forums,” the authors wrote. “Nothing instills more fear, turmoil, and regret” than the high-dose chemotherapy that comes with a stem cell transplant.

One study found that among 145 neuroblastoma survivors who underwent stem cell transplants, there was a 19-fold increase in mortality compared with the general population and a catalog of adverse effects, including at least one severe health event in over 70 percent of survivors. Parent forums teem with “a mixture of reassuring accounts and horror stories, the prevailing sense being that it is a roll of the dice,” the authors wrote.

Current research is focusing on identifying genetic markers that will help pediatric oncologists anticipate which patients might be especially susceptible to serious health complications later on in order to better determine the initial course of treatment. It will also identify high-risk patients who may need more frequent echocardiograms as a preventive measure. Dr. Smita Bhatia, director of the Institute for Cancer Outcomes and Survivorship at the School of Medicine at the University of Alabama at Birmingham, is trying to develop risk-prediction tools to help make that determination. “This is like a million-piece puzzle,” she said. “I don’t know if we will get there in my lifetime.”

As it turns out, a lifetime is precisely the right unit of time to use when studying cancer survival. The expected life span of childhood cancer survivors treated before 2000 is at least 10 years shorter and perhaps 20 years shorter than average, and that isn’t good enough, Bhatia said: “We want to make sure our survivors live as long and as healthy a life as someone who has never had cancer.”

When you treat a child for cancer, Nathan of Dana-Farber said, you’re going to need doctors and social workers and others who are prepared to help that child for life: “You can’t just treat them and say, ‘Go take care of yourself.’ It’s going to take an army.”

In an ideal world, a survivor’s general practitioner would continue follow-up care. A specialist could employ cognitive behavioral techniques to help with cognitive impairment. Efforts could include preventive care against hypertension and diabetes.

“After 10 years, you would think you’re out of the woods, but that’s not the case,” said Dr. Nicholas Phillips, a cancer-survivorship physician at St. Jude.

Many survivors of childhood cancer move on from their oncology team to their pediatrician or general practitioner once they’ve passed the five-year survival mark. Many of those doctors aren’t as well versed in the long-term physical and emotional consequences of pediatric cancer treatment.

The patients “get lost,” Phillips said. They miss out on potential screenings, preventive medicine, early warning signs. Oncologists hope their survivorship studies can help inform the wider medical community.

In interviews with oncologists around the country, the subject of the C.C.S.S.’s future came up repeatedly. A number of new methods for treating childhood cancer have been introduced since the last patients enrolled were diagnosed in 1999, and doctors have made significant improvements in survival rates for more types of cancer in the short term. But this is a new cohort of patients; we don’t know how these protocols will affect children treated in 20 or 30 years’ time. Patients, parents and doctors need updated data that reflect the long-term prospects of those patients who are being treated today, not just those who were treated 24 years ago.

The issue is money, which comes from the National Institutes of Health and its National Cancer Institute. There is currently no funding to track a new cohort of patients treated after the year 2000. The C.C.S.S. also needs money to continue tracking and studying the initial cohorts. Those patients, like the rest of the American population, are now entering old age; it’s incumbent upon all of us to know what to expect and how best to support them.

Beginning in the 1970s, Western medicine went through a phase of reimagining its specialty-dominated approach to illness toward a more holistic one — thinking big in the moment of crisis. In subsequent decades, we’ve also moved toward being more thoughtful about preventive medicine — thinking big about how to avoid the crisis to begin with. The next big shift should be a greater emphasis on recovery over the long term — what we do after the initial crisis passes.

Large-scale survivorship studies could also expand into other childhood diseases, as well into areas of adult medicine. The highly collaborative and long-term approach to the field of pediatric oncology could be a model. And we could think even bigger. Given that we now have electronic data records, we could have a national registry that tracks all diseases, not just pediatric cancer, or even cancer, but all medical issues over the course of a lifetime.

For now and for many survivors, there isn’t always a road map. Marissa Gonzalez knew she could expect visual challenges over time. But blindness was unimaginable. How was she going to run high-profile events for U.S.C.? How was she going to read? What if her roommate moved a chair or left a book on the floor where Marissa wasn’t expecting it and she tripped? She felt like she was stumbling around her own life, and it filled her with rage. She took a nine-month leave from work and started drinking heavily. “I was trying to be drunk so I didn’t have to face reality,” she told me, years of therapy later.

When her mother suggested Marissa sell her car, Marissa was outraged. Though she couldn’t drive, it symbolized yet another loss of freedom. Hearing the car pull out of the driveway for the last time, Marissa dissolved into tears.

Eventually, Marissa pulled herself back together. She stopped drinking away her pain. She started using adaptive technology for her phone and computer, signed up for Audible, mastered the walking stick. U.S.C. offered her a new job, and she threw herself into volunteering with World Eye Cancer Hope, a community organization for retinoblastoma survivors and their families. Because she is part of a survivorship program at U.S.C., her health is carefully monitored. With a 17 percent chance of developing breast cancer, she makes sure to get an annual mammogram. She sees a dermatologist twice a year; even a case of melanoma, which Marissa knew she was at high risk of developing, this past summer didn’t slow her down.

In a 2022 essay celebrating her 30th anniversary of being cancer free, an occasion she used to fund-raise for Rb survivors, Marissa wrote, “I find it both overwhelming and encouraging to look back on the life that retinoblastoma set forth for me. I have no idea what my life would look like had I not been a baby with cancer.” Given her druthers, she would have been born without cancer, she went on, but that was never an option. “That is why I choose instead to focus on what I can control, and what I can do with a cancer-filled life.”

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An earlier version of this article misstated when Dr. Lisa Diller saw a pediatric leukemia patient at the Dana-Farber Cancer Institute. It was in the late 1980s, not the early 1980s. The article also misspelled the surname of a physician at the institute. He is Dr. Stephen Sallan, not Sallen.

How we handle corrections

Pamela Paul became an Opinion columnist for The Times in 2022. She was the editor of The New York Times Book Review for nine years and is the author of eight books, including “100 Things We’ve Lost to the Internet.”

Childhood Cancer and Functional Impacts Across the Care Continuum (2021)

Chapter: 9 overall conclusions, 9 overall conclusions 1.

This chapter presents seven overall conclusions derived by the committee from evidence presented throughout the report. The first section provides narrative summaries of evidence supporting these overall conclusions. Chapters 2 through 8 of the report each end with a set of chapter-specific findings and conclusions based on the evidence presented in that chapter. The second section of this chapter includes a selection of those chapter-specific findings and conclusions that support each of the committee’s overall conclusions.

OVERALL CONCLUSIONS

Functional impacts of cancer and its treatment.

Cancers occurring under the age of 18 years represent a highly heterogeneous group of malignancies with unique biologic and genetic features, as well as age-, sex- and race-specific incidence rates. The past four decades have seen a modest yet continuous increase in the incidence of cancers occurring under the age of 15 years both in the United States and internationally. Since the late 1960s, the survival rate in children diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Nevertheless, there remains a group of primary and recurrent cancers for which modern intensive, multimodal therapy is not curative.

___________________

1 This chapter does not include references. Citations to support the text and conclusions herein are provided in previous chapters of the report.

Although more than 85 percent of children diagnosed with cancer will now survive for more than 5 years after diagnosis, survival rates vary greatly depending on the cancer type and stage. The prognosis is particularly good for standard acute lymphoblastic leukemia; lymphomas; low-grade gliomas; and a subset of low-stage, chemo-sensitive solid tumors. Although progress has been made in the treatment of acute myeloid leukemia and neuroblastoma, survival remains unacceptably low. New therapies are urgently needed for diffuse midline glioma and several advanced sarcomas of bone and soft tissue, for which there has been minimal, if any, impact on long-term disease-free survival.

Although the improvements in survival are encouraging, they have come at the cost of survivors experiencing acute, chronic, and late adverse effects of the disease and its treatment. Treatment of childhood cancers generally includes the individual or combined use of surgery, radiation, chemotherapy, and other therapies. Because cancers often present with symptoms and signs resulting from the anatomic or physiologic impact of the cancer itself, one of the primary goals of initial cancer treatment is to reduce this impact and subsequently alleviate the severity of these impairments, which may affect function. While improvements are often seen with cancer treatment and rehabilitation interventions, full functional recovery may not be achieved. Long-term functional deficits come from a combination of the permanent destructive effects of the cancer itself and the detrimental effects of its treatment, and long-term follow-up of survivors of childhood cancer has yielded greater recognition and understanding of these chronic and late effects. Age at treatment contributes in a unique way to the risk and severity of long-term adverse effects experienced by survivors of childhood cancer.

Chronic health problems related to the toxicity of cancer treatment are common among survivors, increase in prevalence with time since diagnosis, and encompass a spectrum of biomedical and psychosocial disorders and associated functional limitations. Data on historical cohorts of survivors of childhood cancer show that the occurrence and severity of multiple chronic health conditions are substantially greater relative to individuals without a history of cancer. As a result, survivors are predisposed to greater hospital-related morbidity and premature mortality compared with age- and sex-matched controls. In addition, cancer treatment can result in cognitive deficits and have negative psychosocial impacts on children and their families that create negative outcomes with respect to functioning and overall well-being.

For these reasons, the committee drew the following overall conclusion:

• During recent decades, the incidence of childhood cancers has increased at a modest rate, and the survival rates for many cancer types have improved. The result has been a growing number of
• Despite improved overall survival, certain specific cancers, including certain hematologic malignancies with adverse genetic features, some central nervous system (CNS) and solid tumors with metastatic disease, or tumors that recur after primary therapy, have distinctively poor prognoses.
• The functional, social, and psychosocial impacts of all childhood cancers on both the affected children and their families are significant, beginning at the time of diagnosis, continuing through treatment, and often lasting into survivorship.
• The interruption of normal childhood during critical developmental stages by the diagnosis and treatment of a childhood cancer can be particularly debilitating and result in long-term adverse effects.
• Although many survivors of childhood cancer experience persistent adverse physical, cognitive, and psychosocial effects from the cancer and its treatment, CNS tumors and some leukemias place survivors at especially high risk for cognitive deficits, and solid tumors are often associated with physical impairments and medical complications.

Adverse Effects of Treatment

Despite the success of multimodal therapy, the acute toxicities of radiation, chemotherapy, and stem cell transplantation remain high. The multimodal treatment of many cancers—utilizing combinations of surgical intervention, chemotherapy, and radiation therapy, as well as immunotherapies, including chimeric antigen receptor (CAR) T cell therapy, hematopoietic stem cell transplantation, and targeted therapies—is likely to expose children with cancer diagnoses to multiple treatment-related complications and late effects. As a result, a large proportion of survivors of childhood cancer are at significantly increased risk of experiencing serious, potentially disabling, and life-threatening acute, chronic, and late adverse effects of cancer and its treatment. It is likely that overall functional impairment and disability result from not only one but often multiple exposures to different treatments that can have a variety of adverse physical, functional, cognitive, and psychosocial effects. For this reason, it is important for survivors of childhood cancer to receive lifelong surveillance and appropriate interventions for treatment-related physical, cognitive, psychological, and emotional toxicities and late effects.

Medical side effects of therapy are common and can impact every organ system. Cognitive dysfunction also is commonly observed in survivors of childhood cancer, particularly those with a history of CNS cancer or CNS-directed therapies, including radiation and chemotherapy. In addition, anxiety, depression, and posttraumatic stress occur in a significant subset of survivors, and all survivors are at risk for experiencing the effects of cancer and its treatment on psychosocial and emotional functioning. Psychological late effects also may develop well after the completion of treatment.

As noted, the age of the child at treatment is a critical factor, and other factors can be important as well. For example, the risk of secondary malignant neoplasms (SMN) is associated with exposure to various treatments, including radiotherapy and certain chemotherapy classes, but that risk can be modified by age at exposure and genetic predisposition. In addition, many of the long-term and late effects of radiation therapy, which often are permanent, depend not only on the age of the child at treatment but also on the location and volume treated and the dose of radiation administered. For example, irradiation to the brain of a young child significantly increases the risk of neurocognitive injury and the subsequent risk of disability. Also, the completeness of surgical removal of solid tumors is a critical factor in determining the length of chemotherapy and the need for and dose of radiation therapy, which in turn affect the number and severity of side effects and thus the risk of disability.

Although most targeted and immunotherapies are relatively early in their clinical development for pediatric cancer, they offer promise for decreasing the adverse effects of treatment. Immunotherapy as maintenance therapy has been a major breakthrough in the treatment of neuroblastoma, for example. However, supportive longitudinal data are just beginning to emerge, and in general, the survival benefits and long-term consequences of newer therapies remain unknown.

• Adverse physical, functional, cognitive, and psychosocial effects can occur regardless of treatment modality.
• Acute effects of treatment can elicit impairment both during the treatment course and during a period of recovery following its completion.
• The adverse effects of pediatric cancer therapy may also continue well past the end of treatment and can be cumulative and become more severe over time.
• It is important for survivors of childhood cancer to receive lifelong surveillance and appropriate interventions for treatment-related physical, cognitive, psychological, and emotional long-term and late effects.
• The severity of adverse effects can vary depending on cancer type; tumor location; presence of metastases; type of surgery received; treatment modality employed; duration of treatment; and such patient characteristics as age, genetics, and underlying preexisting conditions.
• Increasing understanding of the biology and pathogenesis of cancers is resulting in a growing number of targeted treatments that hold promise for less serious acute and long-term adverse effects.

Occurrence and Persistence of Functional Impairments

Adult survivors of pediatric cancer have a real and increasing risk of experiencing disabling conditions due to chronic and late effects and SMN resulting from the cancer and its treatment. Despite advances in treatment protocols and treatment modifications, physical complications, including neurologic, sensory (e.g., hearing), and musculoskeletal deficits, and late effects continue to occur and lead to functional impairment and restrictions on participation in school, organized sports, and work.

Cognitive sequelae, particularly among survivors of CNS tumors or other cancers involving CNS-directed treatment, may already be present at the time of diagnosis or begin at initiation of treatment, or later, but often persist and may progress in severity over time. Some may not be evident until a later developmental stage poses its functional demands. As a result, repeated screening and risk-based assessment of cognitive function over time is essential to characterize cognitive sequelae accurately in survivors of childhood cancer. Evaluation of IQ alone may underestimate the full neurocognitive sequelae experienced by survivors of childhood cancer. Survivors of cancers and treatments affecting the CNS most commonly experience deficits of attention, working memory, processing speed, executive functioning, and memory that have significant negative impacts on adaptive, educational, and vocational outcomes into adulthood, resulting in persistent functional impairment and reduced independence.

Certain subgroups of survivors (e.g., those heavily pretreated, undergoing bone marrow transplantation, having certain CNS tumor diagnoses) are most likely to experience the psychosocial and emotional functioning effects of cancer and its treatment, and may do so to a greater degree. Adolescent and young adult (AYA) survivors are at higher risk of anxiety, depression, and distress compared with same-age cohorts who have not experienced cancer. Although a slight majority of AYA survivors are able to realize educational

and vocational achievements similar to those of their peers, it may take them longer to do so or require academic or job modifications or support.

Although functional deficits resulting from cancer and its treatment can demonstrate improvement with intervention, long-term functional impairments are expected and may impact performance in the educational, vocational, social, self-care, and avocational arenas. For young survivors, an ongoing focus on shorter-term and intermediate effects of cancer treatment may promote the use of rehabilitative interventions that could have large positive effects on their overall quality of life. Yet, while rehabilitation strategies can improve a child’s level of independence and interaction with skills and activities, persistent measurable deficits will remain for the majority of neurologic and musculoskeletal late effects. These deficits almost uniformly cause impairments in mobility and independence in completion of activities of daily living, and many also cause impairments in communication and cognition skills. As demands for independence increase over time, moreover, deficits in adaptive functioning are likely to become more profound and noticeable across the survivor’s lifetime.

For these reasons, the committee drew the following overall conclusions:

• Cognitive sequelae, especially among children treated for CNS tumors and those who receive certain types of chemotherapy, may begin at the time of diagnosis or initiation of treatment, but often persist and may progress in severity over time. Specific cognitive deficits (e.g., a decrease in processing speed related to radiation treatment) may begin well after treatment has concluded or may become evident at a later developmental stage associated with differing functional demands.
• Long-term psychosocial effects are especially common among the following subgroups of children: those who undergo pretreatment prior to hematopoietic stem cell transplantation, those with CNS tumors, and those who experience significant physical late effects.
• Many survivors of childhood cancer do not achieve an age-equivalent degree of independence in one or more of several domains, which may include mobility; endurance; activities of daily living; and cognitive, social, or communicative skills.
• Although rehabilitation services may improve the level of independence with respect to functional activities among survivors of childhood cancers, survivors may never achieve the full level of educational and vocational participation expected for their age or developmental stage.

Transition from Adolescence to Adulthood

The transition from adolescence to adulthood at age 18 poses particular challenges for children and adolescents diagnosed with cancer in at least two realms: (1) review of continued eligibility for those receiving U.S. Social Security Administration (SSA) disability benefits, and (2) continuity of cancer care and follow-up.

With respect to the first realm, when children turn 18, SSA reviews their eligibility to continue receiving disability benefits using its disability determination process for adults. This review process, called the age-18 redetermination, includes evaluation under nonmedical eligibility rules. SSA’s disability determination process for adults differs from that for children. The process for children consists of three steps, and at Step 3 involves a determination as to whether the child’s qualifying impairment(s) meets or medically equals SSA’s Listing of Impairments (listings) for children, or functionally equals criteria in the listings. In making this determination, SSA considers the child’s functioning compared with that of same-age children who do not have impairments. In contrast, the adjudication process for adults is based on medical–vocational evaluations and consists of five steps. As with children, Step 3 of the process involves a determination as to whether the adult’s qualifying impairment(s) meets or medically equals criteria in SSA’s listings for adults. Although some of the listings contain functional criteria, SSA does not expressly consider whether the severity of an adult applicant’s impairment(s) “functionally equals” the listing as it does for children. Adult applicants whose impairments do not meet or medically equal criteria in the listings move to Steps 4 and 5 of the disability determination process. At these steps, SSA evaluates applicants’ residual functional capacity (RFC) and determines whether their physical or mental RFC allows them to perform past relevant work (Step 4) or, in conjunction with such vocational factors as age, education, and work experience, including transferable skills, to perform other work in the national economy (Step 5). Adolescents who are being reconsidered for SSA disability benefits when turning age 18 must navigate the transition between the child determination process that incorporates functional equivalence to peers and the adult process that focuses on medical–vocational evaluations.

In addition to the differing disability determination processes for children and adults, there are differences in the structure of the child and adult

listings for cancer—notably with respect to the level of specificity. The child cancer listings currently contain a category of “malignant solid tumors,” which appears to encompass any malignant solid tumors that are not otherwise specifically called out in the listings. In contrast, the adult cancer listings do not include a “malignant solid tumor” category, instead calling out many of those solid tumors individually (e.g., soft-tissue sarcoma; skeletal system sarcoma; carcinoma of the kidneys, adrenal glands, or ureters).

The second realm—continuity of cancer care and follow-up—encompasses both individuals who are first diagnosed with cancer during adolescence and survivors of cancers diagnosed earlier in childhood. The National Cancer Institute defines the AYA population as patients diagnosed with a first cancer at ages 15–39. As a group, AYAs experience poorer outcomes compared with younger children and older adults. Many reasons for this discrepancy have been identified, including delays in diagnosis, suboptimal access and accrual to clinical trials, differences between pediatric and adult treatment protocols (i.e., whether treatment is administered by pediatric or adult medical oncology providers), differences in psychosocial supports, variable compliance with prescribed treatments, and dose delays and modifications.

Regardless of age at diagnosis, it is clear that childhood cancer and its treatment often precipitate chronic and late effects that adversely impact health and functioning in adult survivors. Diagnosis of medical conditions resulting from cancer treatment in childhood may require blood tests, echo-cardiograms, electrocardiograms, or other measures. SMN, which are rare in the first 5 years after cancer diagnosis, can cause significant morbidity and mortality in long-term survivors. Strategies for determining which survivors are at high risk and implementing surveillance for SMN have been established to improve morbidity and mortality through earlier identification of SMN, although few such strategies are implemented in survivors 18 years of age or younger. It is notable that the cognitive effects of cancer treatment not only often persist but also may progress in severity over time. As a result, survivors of childhood cancer require regular, ongoing, lifelong surveillance for physical, cognitive, psychological, and emotional treatment-related toxicities and late effects, some of which may not yet be recognized. However, complexities in the transition from pediatric to adult cancer care and follow-up may lead to disengagement in care, which in turn can result in more severe adverse outcomes in adult survivors of childhood cancer. While shifting from family to individual health insurance may contribute to the complexity of transitioning from pediatric to adult cancer care and follow-up, attrition at the point of transfer cannot be explained solely by issues of access, and special support is required to keep survivors engaged in the health care system into and through adulthood.

• The change in SSA’s disability determination process during the transition from adolescence to adulthood introduces challenges for determining disability and sustaining benefits across the 18-year-old threshold.
• Complexities in the transition from pediatric to adult cancer care and follow-up may lead to disengagement in care, which can result in more severe adverse outcomes in adult survivors of childhood cancers.
• Attrition at the point of transfer from pediatric to adult cancer care cannot be explained solely by issues of access. Special support is necessary to keep survivors of childhood cancers engaged in the health care system into and through adulthood.

Participation in Clinical Trials

Clinical trials that aim to improve survival and limit toxicity are essential to advance care and outcomes for patients with childhood cancer, and participation in such trials is considered the standard of care in pediatric oncology. Ideally, all children diagnosed with cancer should have the opportunity to enroll in a trial, which will ensure that they are receiving the most up-to-date treatments while also enabling the generation of new knowledge about how best to treat patients with particular types of cancer. With increased trial availability and continued study, for example, a decrease in side effects is anticipated from such advances as precision radiation therapy, including proton therapy. Likewise, targeted and immunotherapies offer promise for addressing cancers with unmet clinical need, but further studies are required to understand how novel targeted and immunotherapies can be incorporated into the treatment of both newly diagnosed patients and relapsed and refractory patients. Continuing research on tumor biology and genomics may reveal additional therapeutic targets and treatment options. Trials to test investigational therapies for children with high-grade CNS and metastatic or relapsed non-CNS malignant solid tumors are especially needed. Studies to understand late effects of novel therapies and intervention studies to mitigate late effects and SMN in hematologic malignancies are imperative because although cure rates are high in many cases, the burden of toxicities and late effects is significant.

• Clinical trials advance the standard of care for patients with childhood cancers and are critical to improving survival while also
• Regulatory agencies have implemented changes to enable early access to novel therapeutic agents and to facilitate the participation of adolescents and young adults and pediatric patients with cancer in clinical trials.
• It is important to increase the participation of adolescents and young adults in clinical trials, as their participation rate is typically much lower compared with younger children.
• Increased engagement of patients, especially those from underrepresented groups, and their advocates in the development of clinical trials is important to enable representation of the patient and family perspective, including quality of life, tolerability of side effects, and goals of treatment, in the trial design.

Availability of Pediatric Cancer Care Services and Providers

High-quality pediatric cancer care requires management by a multidisciplinary team of clinicians with expertise in pediatric cancer care. The approaches to pediatric and adult cancer care frequently differ. Relative to oncologists who treat adults, pediatric oncologists often utilize different criteria for cancer staging and risk stratification (e.g., for Hodgkin lymphoma) and different treatment protocols. Surgical removal of pediatric solid tumors is complex and should be done by pediatric surgical subspecialists at specialized centers. Certain types of procedures (e.g., treatment of pelvic bone tumors with surgical resection and cytoreductive surgery and hyperthermic intraperitoneal chemotherapy; treatment of neuroblastomas with vascular involvement using radiofrequency ablation and cryoablation) are available only at highly specialized centers (HSCs)—centers in which an interventional radiologist or surgeon has received specialized training beyond the standard training for that specialty. Similarly, precision radiotherapy techniques, including proton beam radiation, are increasingly available and used to mitigate late effects in patients with childhood cancer. Pediatric oncologic care therefore often requires treatment at an HSC. Accordingly, patients from less densely populated and rural areas may have to travel some distance to reach a treatment center that can provide the specialized pediatric cancer care they require. Specialized treatment centers are available in every state, but HSCs are rare. In states without an HSC, out-of-state consultation would be expected for treatments available only in HSCs.

• High-quality care for pediatric cancers relies on effective coordination among a highly specialized team across a broad range of disciplines.

SELECTED FINDINGS AND CONCLUSIONS IN SUPPORT OF THE COMMITTEE’S OVERALL CONCLUSIONS

Box 9-1 shows the links between the overall conclusions presented above and some of the most relevant chapter-specific findings and conclusions that support them. 2

2 Not all of the committee’s chapter-specific findings and conclusions are included in Box 9-1 . Those that are included are numbered according to the chapter in which they appear.

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Since the late 1960s, the survival rate in children and adolescents diagnosed with cancer has steadily improved, with a corresponding decline in the cancer-specific death rate. Although the improvements in survival are encouraging, they have come at the cost of acute, chronic, and late adverse effects precipitated by the toxicities associated with the individual or combined use of different types of treatment (e.g., surgery, radiation, chemotherapy). In some cases, the impairments resulting from cancer and its treatment are severe enough to qualify a child for U.S. Social Security Administration disability benefits.

At the request of Social Security Administration, Childhood Cancer and Functional Impacts Across the Care Continuum provides current information and findings and conclusions regarding the diagnosis, treatment, and prognosis of selected childhood cancers, including different types of malignant solid tumors, and the effect of those cancers on children’s health and functional capacity, including the relative levels of functional limitation typically associated with the cancers and their treatment. This report also provides a summary of selected treatments currently being studied in clinical trials and identifies any limitations on the availability of these treatments, such as whether treatments are available only in certain geographic areas.

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Cancer Research Catalyst The Official Blog of the American Association for Cancer Research

Home > Cancer Research Catalyst > Raising Awareness of Childhood Cancer

Raising Awareness of Childhood Cancer

September is Childhood Cancer Awareness Month. 

Childhood cancer is relatively rare, but it is a devastating diagnosis that can ravage a family and create lifelong health challenges. In the United States, approximately 15,590 children and adolescents under 20 were diagnosed with cancer in 2018, according to the latest data from the National Cancer Institute. Pediatric cancers are the leading cause of death from disease of children and adolescents.

Thanks to advances propelled by cancer research, pediatric cancer death rates have declined by nearly 70 percent over the past four decades. Survivors may face long-term health effects, but they often thrive, leading full lives and bringing immeasurable joy to their families and loved ones.

This month,  Cancer Research Catalyst introduced readers to Fernando Whitehead and Cami Green, two young cancer survivors whose families have graciously shared their stories with the American Association for Cancer Research (AACR). Fernando was featured In the AACR’s inaugural  Cancer Disparities Progress Report , released September 16, and Cami’s story appeared in the  AACR Cancer Progress Report 2020 , released September 23. Patients like them provide constant inspiration for the AACR’s mission to prevent and cure cancer. 

The AACR supports a wide range of research on childhood cancer. Recently, AACR journals featured  studies that examined how radiation treatment received as a pediatric cancer patient can adversely affect cardiovascular health, metabolism, and the chance of surviving adult breast cancer. The AACR’s Pediatric Cancer Working Group bridges the AACR with advocacy and legislative groups to promote the prevention and treatment of childhood cancers.  Also, the AACR is the Scientific Partner to Stand Up To Cancer, which conducts pioneering research on pediatric cancer through a  Dream Team collaboration with St. Baldrick’s Foundation. 

Here are some other AACR  resources on pediatric cancer.

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Thanks for sharing about childhood cancer awareness. How AACR supports a wide range of research on childhood cancer. Clinical research

• September is Childhood Cancer Awareness Month
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Telling the Story of Childhood Cancer—The Experience of Families After Treatment

Penelope j slater.

1 Oncology Services Group, Queensland Children’s Hospital, South Brisbane, Queensland, Australia

Background:

The Discovery Interview methodology was introduced to Oncology Services Group in 2012 as a service improvement strategy and was evaluated positively by staff and families. It enabled clinical staff to hear the deidentified families’ stories, understand their experience, and implement process and practice enhancements.

This study collected family stories following treatment for childhood cancer at the tertiary center in Queensland, with the goal of raising awareness and improving family experience.

Twenty-five families were interviewed via an interview spine which covered the major stages of cancer treatment and themes were extracted.

Major themes were psychological support needs, adapting to the new normal, and rebuilding relationships. After treatment, the parent had time to reflect on their experience and lost the reassurance of regularly attending the tertiary hospital. There was ongoing anxiety regarding relapse. Parents reported various coping strategies and some wanted to maintain contact with other oncology families. Families strived to get back to a level of normality such as attending school and experienced some challenges in relationships with family and friends.

Conclusion:

Families needed support and reassurance from their local health professionals to navigate the ongoing challenges following treatment.

Introduction

Despite advances in treatment, cancer remains the leading cause of death of 0- to 14-year olds in Australia. Many caregivers report feeling overwhelmed by the complex treatment regimes and supportive care needs of their child with cancer ( 1 ). Research has shown significant impacts on health-related quality of life for caregivers, including physical and psychological health, and emotional and social functioning ( 2 ). Cancer treatment can be a stressful event for the whole family, and regional families may have the extra burden of the family being split-up to enable 1 parent to accompany the child to the tertiary center.

In Queensland, approximately 170 children are diagnosed with cancer each year, and more than half reside over 100 km from the tertiary center at the Queensland Children’s Hospital (QCH; formerly Royal Children’s Hospital [RCH]) in Brisbane. Queensland covers more than 1.85 million square kilometers and to address the geographical challenges for families, care is provided through a model which includes 10 regional hospital shared care units throughout the state with trained and supported clinical staff.

To enable consumer-driven service improvement, it is important to understand the experiences of families and work together to design services to fulfill family needs. This study recorded the stories of the families, including challenges following the intensive phase of treatment. It discusses suggestions made by parents regarding how they could be better supported by their local health providers, including general practitioners (GPs).

Discovery Interviews were a patient-centered methodology developed in the National Health Service (NHS) in the United Kingdom in 2000 as a tool for service improvement and patient involvement and enabled the collection of detailed experiences of families with the content driven by the interviewees ( 3 – 6 ). It has been used in several different services, and evaluation of this methodology within the QCH showed benefits in exploring the families’ needs and improving their experience ( 7 ).

Generally, the approach used a one-to-one, face-to-face open interview technique that enabled the collection of detailed experiences of participants with some prompting based on key stages of the experience of the service (a spine) ( 8 ).

The spine was:

Thinking something was wrong Seeing someone in the health system Having tests to find out what was wrong Being told what was wrong Receiving treatment Living with your condition Being followed up Learning to cope with the future

Following the Queensland Health Human Research Ethics Committee approval (HREC/10/QHC/51), 5 oncology staff members were extensively trained and practiced in undertaking Discovery Interviews with an experienced interviewer originally trained by the NHS staff in person.

An invitation letter was sent from the corporate health department to the carers of all patients who were admitted to the RCH with a diagnosis related to cancer management and treatment during 2010. After replying and expressing an interest to be involved, interviews were collected from these consenting carers. In addition, consenting members of the Queensland Paediatric Palliative Care, Haematology and Oncology Network (QPPHON) Patient, Family and Carer Network, which commenced in October 2013, and a number of interested parents in the inpatient ward at QCH in 2015 were also interviewed. Interviewees were excluded if they were less than 18 years of age or had a cognitive impairment, intellectual disability, or a serious mental illness.

The interviews took place in the hospital in a quiet location or in the family’s home. The interviewee was taken through an information sheet and consent form, which was signed, and instructions were given about how to revoke an interview from the pool. Interviews lasted anywhere between 30 minutes and 2 hours, as guided by the interviewee and were audiorecorded. Interviews were transcribed, deidentified (patient, family, and clinicians), and condensed to enable them to be read back to clinical teams.

The interviewers recorded 17 Discovery Interviews between March 2012 and May 2014 at RCH, then a further 8 interviews after the move to QCH between March and November 2015.

The Discovery Interview methodology was not designed to provide a representative sample but to discover insights into the family’s experience that cannot be gained in other approaches. Even one interview was a rich resource for the service team to develop service improvements.

The interviews were analyzed through an inductive thematic approach ( 8 ). This methodology ensures the voice and experience of individual participants are retained but allowed for the exploration of collective themes. The person doing the analysis listened to the full interview to gain the greatest understanding of the parent’s story, and the transcript was read several times. Themes that arose were recorded and grouped in a spreadsheet table, along with the interview extract to which they refer.

Themes were allowed to rise through the coding process, rather than being predetermined, consistent with the Discovery Interview approach ( 6 ). Interviews were deidentified and condensed and relayed to the clinical teams for their insight and discussion about service and practice improvements ( 7 ).

This article focused on 2 questions—what was the ongoing impact on families of the child’s cancer episode after the intensive phase of treatment had been completed, and what support would help improve that experience? All names have been changed in the quotes provided.

The characteristics of the parents involved in the study are shown in Table 1 and a summary of themes found in the analysis of the interviews in Table 2 .

Characteristics of the Parents and Patients Involved in the Study.

Number of Parents Who Talked About Experiences Related to the Themes of the Discovery Interviews, of a Total of 25 Interviews.

Psychological Support

Eight parents reported an impact of cancer treatment on their child including an ongoing fear of medical procedures, temporary regression in development, reduction in social skills, and physical limitations.

Jane regressed to very much a child—I think it was just too over whelming for her.

Six of the parents described how well their child had coped and matured through the learning experience, and how it had influenced their career choices to help others, and improved their communication with their parents. One teenager had developed some short-term goals which she found motivating during treatment.

She had experiences that none of her peers have had. She is able to deal with situations at school that other children probably wouldn’t. She doesn’t get sucked into all the social thing, where people fall out with each other. She’s been a tower of strength to go through it all. At one stage we were home between chemos, and she’d say I don’t feel like going back for chemo. But she’d hop in the car and away we’d come. She’s coping really well with all her treatments and the follow-ups. I don’t think I could be as strong as her, everything she’s been through.

Children and parents had to deal with the deaths of some of their friends at the hospital:

We’ve lost some kids lately, and one was her best friend. We went to the funeral but we both lost it, so now we just do things with her on the day of the funeral, take her out and do fun things, come home, release a balloon.

Eleven parents mentioned the impact of finishing treatment and coming to terms with their experience. One parent gave the contrast of being on treatment, where they were very task orientated and focused on their child, to after treatment when their child was doing well and they had time to reflect. Several mentioned losing the safety net of being at the hospital frequently and getting that reassurance.

When she started maintenance it all hit me and I completely lost it. I had a complete breakdown because we weren’t going up there every week. When we hit maintenance it was like yeah great, we can try and get a bit of a life back and relax a little. But I didn’t realise how much of a shock it was going to be because all of a sudden we weren’t going up there every week, and I wasn’t getting the reassurances from my doctor. Then I had time to think and the more I thought, the more depressed I got and the more it hit me, and it just completely bowled me over and I couldn’t cope with the little things. It would be helpful to give parents a bit of a warning going in to maintenance, because I’ve spoken to some other mums after it hit me and they said, Yeah same thing happened to me.

Parents described returning to the hospital as a bad dream or having a wave of unease as they drove down. However, this was offset when they arrived at the hospital by seeing familiar and friendly families and staffs.

Parents developed coping strategies including writing a book about the experience, seeing a psychologist for assistance, being prescribed antidepressants, and talking to their social worker. Others coped through fighting on, the attitude of finding something everyday to be grateful for, making everyday count, and being glad for the time they had with their child.

People would say you’re doing great and I could get out of bed and brush my hair and leave the house and that was a choice I made to get up and fight for him and my family.

Two parents called for a role at the hospital that dealt with the emotional needs of families. Two others were keen to maintain contact with other oncology families for support, referring to a level of honesty and understanding not felt from other people.

A couple of parents had seen their local GP to get some assistance, although one said it was difficult to explain what stopped her from sleeping and caused anxiety.

As a mother, living with a child that’s had cancer, I know my life has changed forever, and I’m still learning to life with that. I went to my GP and we agreed I need a little help right now, in the form of low dose anti-depressants and some psychologist appointments to give me skills to process what’s happened and cope with the future. I can’t operate at this high level, with adrenalin and fear any more.

Three parents raised concerns about seeking support from local health providers.

Where do you go in the community when you finish, because no GP wants a problem like that. They think you’re being over-protective of your child for simple things.

Anxiety for the future was mentioned by 9 parents. “Scanxiety” was a term commonly used by parents in the interviews. When their child was due for a magnetic resonance imaging, or similar test, they reported being emotional and anxious. In addition, when their child was lethargic or sick, the parent became fearful of relapse and the side effects of treatment.

We were up in emergency as she had a virus, they kept using the word relapse. You don’t say that to me, you don’t use that word ever.

The New Normal

One of the aims for families following the upheaval of treatment was to get back to a level of normality for the family. Parents talked about the difficulty in balancing what they saw as the 2 lives of hospital and their community. Financially, families sometimes struggled to get back on an even keel.

From the outside we look like we’re normal but we’re not, we try to pretend how normal things are because my son needs that. All we’re doing is trying to get back to some level of routine, so we can build some consistency, then work on her development.

An important part of getting back to normal was the child returning to school.

The best part about her being back at school is just being back into a partial normal life for her, being around her friends, and doing all the things at school.

Two parents with younger children, although missing out on some content, thought their children were not impacted too greatly in missing school, as their education had been supported by their usual teachers providing work, the RCH/QCH school teachers and extra education through iPads. One parent was dissatisfied with the support from their regular school for teachers providing work.

If it’s so important for them to be educated when they’re well, what’s so different about that when they’re sick? The kids think, I must be going to die because no-one cares anymore.

Some older patients had continued with school through distance education during treatment, although 1 parent found treatment too overwhelming to add home schooling to their duties. On returning to school, another child decided to enroll in less complex subjects and work toward a tertiary entrance score to reduce the pressure on themselves.

One parent described the difficulty of fitting back into school:

He was starting school with no hair and was a bit swollen from the steroids, he looked different. Some days I’d go and pick him up and he was hiding, so that broke my heart. Academically he hasn’t suffered at all, but behaviourally, getting him there and getting him confident, has been a real challenge.

Rebuilding Relationships

The interviews showed that cancer treatment had an impact on the whole family unit. It was sometimes difficult for the child to reconnect with their friends after being away for sometime and they were on a different level socially.

It was hard maintaining contact with her friends—you lose social skills when isolated and not been able to socialise. It took a while to hook into new friendships at school as some had moved on. Her friends matured socially, she matured from a life perspective.

One parent described how the child had become closer to their mother who stayed with them in hospital, and families had to actively work on the relationship with the other parent.

The relationship between the spouses/partners also required time and effort. One parent reported hiding some of their feelings from their spouse, another cited a lack of understanding, while another said their partner was their great leveler.

I’m hoping in the future time, when we get back to some kind of a new normal, that we can rekindle that relationship with my spouse; to try and get back what we’ve missed out on together.

Siblings were sometimes resentful of the attention that the patient was getting, including special gifts such as iPads, even jealous that they had to eat all their tea and their siblings did not.

We have encouraged his brother to be open and ask questions and he’d ask is Jack dying? I said well initially yes, but now the doctors are making him better and we talk about Jack’s sick blood, and how it’s getting better. I worry about the impact of me just sort of disappearing and being emotionally a bit distant probably. I was not around very much. She’s a pretty tricky sort of kid. I don’t know if that’s just her or it’s because of what has happened and whether I’m going to carry this guilt around for the rest of my life. My other son, now he’s older, he didn’t want me to go this time. But he couldn’t come as we had to fly. He rang yesterday asking if his brother was still sick. I said I don’t know, we haven’t had the tests yet. He said “You ring me and let me know if he’s sick cause I want you to come home.” So that’s upsetting. We got a little bit of support talking to his siblings about it, but there were some tricky times that weren’t covered in the book. His older brother John was really resentful of the attention and all the stuff his brother got. And why he had to eat all his tea and his brother didn’t. I’d just say to him that his brother had all these horrible things going on at the moment, so for him to get a few extra nice things is not unfair, and I’m sure he’ll share them with you. And we’ll do something special ourselves. So every now and then my husband dealt with the hospital and I’d spend some time with John.

Parents who involved the siblings as much as possible in the treatment and related decisions, and deliberately spent time with the other siblings when they could, reported that this helped. Siblings were also helped through the work of Camp Quality and CanTeen, and the Siblings Day at the hospital was also commended.

Several parents talked about challenges to relationships with wider family and friends. The family may have isolated themselves to prevent infection or felt that there was a lack of understanding of what they had been through and a wearing down of goodwill of others over the years of treatment. Two parents protected their friends and family from the realities of cancer treatment.

My best friend knows my life out here but they don’t understand the life in hospital, unless you’ve been in there and slept the nights, it’s difficult to explain. I’ve guarded and protected a lot of friends and some family from some of the realities in there. Why do people keep telling us to get over it, you can’t get over this. You do move on and try not to think about it, but you do get worried when it’s time for blood tests and to see doctors. The community has no idea, and there’s very, very few people out here that would have half a clue about how the family feel, what they carry around in their heart, how lonely they are.

Parents spoke about the lack of awareness in the community about the need to prevent infections in oncology patients, the length of the treatment, and some of the resulting behavioral difficulties that may arise in the child. Parents felt the local community had no idea about how their family felt and this resulted in further isolation.

Society’s not well educated with regard to the prevention of secondary infections and without that their chances of survival is slim. So many families end up segregated—I don’t have a good relationship with most of my family because of it and issues that evolved from it.

The psychological impact of a childhood cancer diagnosis for the child and family is well-documented. Survivors score lower in psychological assessments ( 9 ), tend toward anxiety and depression ( 10 , 11 ), behavioral issues ( 11 , 12 ), and have post-traumatic stress symptoms ( 13 , 14 ). Siblings also show emotional, behavioral, and social difficulties ( 15 , 16 ) and can have changed relationships within their family ( 17 ).

Quality of life and post-traumatic stress scores may only normalize after 1 to 3 years after end of treatment ( 11 , 13 , 14 , 18 ). Longer recovery times are related to the length of treatment, poor prognosis, greater psychological distress in the parents, and less social support ( 10 , 11 , 12 , 19 ). Follow-up should include psychological monitoring of the whole family, including psychosocial screening, education check-in, and availability of counseling ( 11 , 20 , 21 ).

This study suggests that proactive interventions from a psychologist and support through relevant charities should continue after treatment. Parents asked for education regarding coping at end of treatment, and QCH now provides an “End of Treatment Parent Day” and a booklet entitled “Life back in the Community,” which have been very well received by those who access them. Online support is also being developed. Interventions should be based on the developmental and cognitive stage of the child and the status of the family ( 22 , 23 ).

The parents in this study pursued personal coping strategies such as writing, developing a positive attitude, and seeking out support from health professionals and other oncology families. Other studies have found yoga programs and general physical activity had benefits ( 24 , 25 ).

The parents interviewed discussed the need to return to normality, such as the child returning to school. However, some reported behavioral issues and difficulties reconnecting with friends who may have moved on during their child’s treatment. Child and adolescent survivors returning to school may have academic or social issues ( 26 – 28 ). As a result of their experience, some children relate better to older children or teachers than their peers ( 26 ). To prevent this, children need peer socialization during treatment) ( 26 ) and support for reintegration into school ( 28 ).

Social isolation may impact on a child cancer survivor for various periods of time, and this should be monitored ( 29 ). Parents reported in this study that cancer treatment impacted relationships between the parents, between members of the family, and with extended family and friends. This may reduce the opportunities of support and socialization through their usual networks, especially when there may be a lack of understanding of what the families have been through. Several parents asked for ongoing coordinated connections to other oncology families.

Childhood cancer survivors have been shown to have ongoing life issues, such as academic attainment, obtaining a job and life and health insurance, and lower rates of marriage and parenthood ( 30 ). They can have more uncertainty, reliance on their parents, and need for assistance than their peers ( 31 ). This is exacerbated by the economic burden of cancer treatment ( 32 ).

Physical issues may also prevent a child from “returning to normality.” Physical well-being ( 33 ) and motor functioning ( 12 ) of survivors have been found to be affected for all ages. Our End of Treatment Parent Day provided a panel of allied health professionals including a dietician, physiotherapist, and psychologist to provide advice to parents on issues they were facing.

To enable consistent and ongoing care, especially for over half our families from regional and rural areas, support must be available from local health providers. This support can improve a family’s readiness to return home after treatment ( 34 ) and result in better mental health quality of life scores ( 18 ).

General practitioners can support long-term follow-up if they receive adequate guidelines, information, and communication from specialists ( 35 ). In Queensland, QCH is developing connections to upskill referring GPs to support families after treatment along with health professionals at the regional shared care unit.

Limitations

This study reports on families’ experiences based on the narrative from parents. Significant correlation has been shown between parent-reported and child self-reported quality of life scales, and parents are able to accurately convey their child’s experience ( 36 ). However, future studies could collect Discovery Interviews from older children to determine any additional support that could be provided to them.

The interviews provided a unique opportunity to bring forth the voice of the families regarding their needs. When families return home from cancer treatment, they need support to adjust to changed circumstances with their family and friends, rebuild the relationships with other siblings and their spouses/partners, get back to a level of normality, and cope with the continuing anxiety that the cancer could return. They need to be diligently monitored and reassured by their local health professionals. Targeted interventions guided by these narratives could provide much needed support and be applicable for any family with a child with a long-term condition.

Acknowledgments

The author thanks the parents of children with cancer who provided such generous and open contributions in sharing their story, the interviewers for collecting them (Penny Slater, Liz Crowe, Natalie Bradford, Anita Cox, and Leigh Donovan), and staff for listening to the stories and suggesting ways to improve the family’s experience. The author also thanks Shoni Philpot for her guidance in establishing the use of this methodology.

Author Biography

Penelope J Slater is program manager for the Queensland Paediatric Palliative Care, Haematology and Oncology Network, and the tertiary centre of that network at the Queensland Children's Hospital. In that role she manages the statewide clinical network and the oncology program at the QCH, including planning, evaluation, quality and safety, project management, staff wellbeing and consumer engagement. She has been with Queensland Health since 1990 in various research, planning and evaluation positions relating to diabetes, aged care, suicide prevention and oral health services.

Declaration of Conflicting Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The work was funded through the Queensland Paediatric Palliative Care, Haematology and Oncology Network.

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Biological age surges in survivors of childhood cancer

An X-ray shows growths (white) in the pelvic lymph glands of a child with the blood cancer called lymphoma. Credit: Zephyr/SPL

Survivors of childhood cancer live their adult lives on an accelerated timeline: by some measures they age 5% faster each year than do people who did not have cancer as children, a new study shows 1 . Adult survivors can show signs of ageing earlier and die younger.

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Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours

• Adwoa Bemah Boamah Mensah 1 ,
• Humaima Nunoo 1 , 2 ,
• Kofi Boamah Mensah 3 ,
• Joshua Okyere 1 , 4 ,
• Veronica Millicent Dzomeku 1 ,
• Felix Apiribu 1 ,
• Comfort Asoogo 5 &
• Joe-Nat Clegg-Lamptey 6  

BMC Psychology volume  11 , Article number:  361 ( 2023 ) Cite this article

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The physical demands of caring for children and adolescents diagnosed with cancer, over a lengthy period, exert significant strain on the health and well-being of family caregivers. The capacity of family caregivers to surmount and cope with the various strains they experience due to the diagnosis and treatment trajectory is essential to the quality of life of the child and adolescent who has been diagnosed with cancer. However, the experiences of family caregivers have been under-explored. This study explored the strains, resources, and coping strategies of family caregivers of children and adolescents diagnosed with cancer in Ghana.

Guided by a descriptive phenomenological design, 20 semi-structured interviews with family caregivers were conducted at a tertiary health facility that provides paediatric oncology services. The study was conducted between June and October 2022. The interviews were transcribed verbatim, translated and coded using NVivo software. An inductive thematic analysis approach using Vaismoradi et al.’s thematic analysis framework was followed in analysing the data.

The study revealed that family caregivers of children diagnosed with cancer experienced three main strains: somatic strains (poor sleep quality, loss of appetite, and unintended weight loss), economic strains (financial burden and loss of economic livelihood), and psychosocial strains (isolation from social activities and network, frustration and helplessness, and balancing multiple family needs). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated.

The study concludes that family caregivers experience somatic, economic, and psychosocial strains. However, they can leverage available resources (family cohesiveness, community support, and support from healthcare providers) to cope with these strains. There is a need to educate and sensitize family caregivers about the potential strains that they are likely to experience prior to the assumption of care roles. Also, the formal inclusion of non-governmental organizations and religious bodies will ensure that family caregivers receive sufficient community support to cope with the strains of caregiving.

Peer Review reports

Paediatric cancer is a health concern that adversely affects the quality of life of children and their family. About 1.8 million children were living with cancer in 2019; of this number, there were 291,319 new cases [ 1 ]. Low-and-middle-income countries (LMICs) alone account for about 90% of the global incidence of the paediatric cancer [ 2 ]. Available evidence also indicates that about 80% of children diagnosed with cancer are cured in high-income countries due to the availability and accessibility to comprehensive services; however, in LMICs, less than 30% of children diagnosed with cancer get cured [ 3 , 4 ]. Given the vulnerability of children, family caregivers play a critical role in managing and providing the needs of the child and adolescent who has been diagnosed of cancer.

There is evidence that the physical demands of caring for children with cancer, over a lengthy period, exert significant strains on the health and wellbeing of family caregivers [ 5 ]. In Ghana, like many LMICs, the diagnosis and treatment of paediatric cancer are primarily limited to tertiary health facilities; this turns to be in favour of urban dwelling families [ 6 ]. The implication of this is that many rural dwelling families that have a child or adolescent diagnosed with cancer have limited accessibility to healthcare. This further means that rural dwelling families must travel long distances to receive treatment for their child/adolescent who is suffering from cancer. The resultant effect of this long-distance travel could be financial strain due to the cost of transportation, separation from the rest of the family, and psychological distress for the family caregiver [ 6 , 7 ].

It is noteworthy that the capacity of family caregivers to surmount and cope with the various strains that they experience due to the diagnosis and treatment trajectory is essential to the quality of life of the child/adolescent who has been diagnosed with cancer [ 8 ]. For instance, one study has shown that parental stress predicts functional outcome in paediatric cancer survivors [ 9 ]. Similarly, parental psychopathology has been reported to be significantly associated with psychosocial dysfunction in children diagnosed with cancer [ 10 ]. The family adjustment and adaptation response (FAAR) model as postulated by Patterson suggests that “a family balances their demands (cumulative stressors and strains coming from individual, family and community sources) with family capabilities, which include resources (from individual, family and community sources) and coping behaviours” [ 8 ]. Thus, highlighting the significance of strains, resources and coping strategies of family caregivers of children diagnosed with cancer.

Despite the foregoing, studies in sub-Saharan Africa, especially Ghana have not explored the strains, resources and coping strategies of family caregivers of children/adolescence diagnosed with cancer. Studies that have attempted to explore this issue have not explored strains, resources and coping strategies together. Resources in this context refers to anything that enables the family caregiver to cope with the numerous somatic, psychosocial and financial strains. For instance, Bekui et al. [ 6 ] investigated the psychological and spiritual wellbeing of family caregivers; similarly, Bekui et al. [ 11 ] explored the physical and socioeconomic strains that confront family caregivers of children and adolescents diagnosed with cancer. Both studies did not explore the coping resources and coping strategies adopted by family caregivers to overcome the strains they experience. This situation presents a substantial gap in the current knowledge of family caregiving for children diagnosed with cancer in resource-constrained settings like Ghana. To narrow this knowledge gap, the study aims to describe the strains, concerns, resources and coping behaviours of family caregivers of children and adolescents diagnosed with cancer in Ghana.

Study design

To gain deeper insights into the strains of caregiving, a qualitative research approach was followed. Specifically, a descriptive phenomenological design was employed. The authors adopted this study design because it examines and describes the actual experiences of a person rather than what is believed to have occurred during the experience of a particular phenomenon [ 12 , 13 ]. Given that in this study we are concerned about the actual lived experiences of family caregivers regarding the strains they encounter, and the resources and coping strategies they adopt in executing their caregiving roles, descriptive phenomenology was deemed the most appropriate design.

The present study was carried out at the Paediatric Oncology Unit, situated within the Komfo Anokye Teaching Hospital (KATH) in Kumasi, Ashanti Region, Ghana. Established in 1954, KATH is the second largest hospital in the country, boasting a capacity of 1,200 beds and offering comprehensive inpatient and outpatient care across various disciplines [ 13 ]. It serves as a primary healthcare provider for patients residing in the central and northern regions of Ghana. Within the Child Health Directorate of KATH, the Paediatric Oncology Unit is situated. This unit attends to patients as young as 15 years old who are diagnosed with cancer, as documented by Dogbe et al. [ 14 ]. In the year 2020, the unit diagnosed a total of 112 new cases of paediatric cancer. As one of the two major paediatric cancer treatment facilities in the country, this unit is primarily responsible for managing most childhood cancer cases and acts as a referral centre for neighbouring regions. Hence, the selection of this site was deemed most suitable for the execution of this study.

Target population

In this study, the target population were primary family caregivers. That is, an individual who assumes the primary responsibility for providing care and support to the child or adolescent who has been diagnosed with cancer [ 15 ]. We recognised family caregiver as including a close family member, such as a parent, sibling, or other relative who takes on the role of providing physical, emotional, and often financial assistance to the child or adolescent diagnosed of cancer.

Sample and recruitment

The study did not have a predefined sample size. Based on a set of inclusion criteria, we used the purposive sample technique to screen a total of 27 family caregivers of children who had been diagnosed with cancer. The inclusion criteria were that the participants must be (a) an adult (i.e., aged 18 years or older); (b) a parent or guardian of the child/adolescent; (c) have a child aged < 18 years diagnosed of any type of cancer (see Table  1 ); and, (d) a family caregiver to the child/adolescent and be involved in the health decision-making for the child/adolescent. The following criteria were used to exclude participant from the study; (a) caregiver less than 18years and (b) caregiver providing paid service. By employing purposive sampling, the researchers aimed to deliberately select participants who possess relevant experiences and knowledge that could provide rich and meaningful insights into the study [ 16 ]. Even though 27 participants were eligible to participate in the study, we interviewed 20 family caregivers. This was because by the 17th interview, no new analytical information was emerging. However, we followed Francis et al.’s [ 17 ] stopping criterion by conducting additional three interviews to confirm that we had reached data saturation. The 18th, 19th, and 20th interviews confirmed that we had reached the point of saturation and met the stopping criterion. The participants included mothers (14), fathers (2), grandmothers (2), brother (1), and aunt (1) (see Table  2 ).

Data collection

Data collection occurred between June and October 2022 using a semi-structured interview guide. HN (second author) collected the data from caregivers through individual, in-depth, face-to-face interviews using a semi-structured interview guide. The in-depth interview allowed the participants to share their views and thoughts on the phenomenon within their setting [ 18 ]. The interview guide was structured in four sections. The first section collected data on the background characteristics of both the parent and the child who has been diagnosed of cancer. This was followed by the next section that collected data on the caregivers’ recognition and appraisal of symptoms. The third section of the interview guide explored caregivers’ reaction to the diagnosis of the child or adolescent, while the final aspect explored caregivers’ home experiences with their child’s/adolescents who has been diagnosed of cancer. Details of the questions asked can be seen in Supplementary File 1 .

At the point of recruitment of the study participants, we provided an information sheet that detailed the purpose and scope of the study, and other ethical issues. We then obtained a written consent from each of them and scheduled the interview dates. In addition to taking field notes, all the interviews were audio recorded using a tape recorder. Prior to each interview session, we reiterated the purpose, scope and data collection procedures. We also confirmed the written consent obtained by seeking an oral consent. The interviews lasted between 30 and 65 min. The interviews were conducted in Twi, which is the dominant local dialect in the Ashanti region where the study was conducted. Through the interview, participants were encouraged to respond in their own words about their experience with the adolescent/child’s diagnosis, and with sensitive probing and redirection, the interviewer tried to capture details on the phenomenon to enhance full understanding of participants’ realities [ 18 ].

Data analysis

Our data analysis followed an inductive thematic analysis using Vaismoradi et al.’s [ 19 ] thematic analysis framework. Vaismoradi et al. [ 19 ] outlines a systematic process of familiarisation, code generation, theme development, and refinement to identify and define meaningful themes. To become familiarised with the data, the audio recordings of the interviews were played repeatedly. Following that, we transcribed the audio data verbatim and translated to English language using back-back translation process. To ensure accuracy in interviewing, transcribing, and translation, one of the researchers (ABBM) who is fluent in Twi and English evaluated a random selection of the audio data and transcripts. After the transcription, JO imported the transcripts into QSR NVivo-12 Plus for the coding of the data. Using the ‘code’ function in NVivo-12 Plus, JO assigned codes to the emerging issues from the transcript. Emerging codes were labelled with the participants’ verbatim narratives to retain the intended meaning. The common patterns across the assigned themes were later categorised to constitute themes and sub-themes [ 19 ]. The preliminary codes and themes generated were discussed among the research team as a way of refining and coming to a consensus on the final themes and sub-themes.

Trustworthiness

Qualitative research thrives on rigour and the ability of researchers to ensure the trustworthiness of the study findings [ 20 ]. We ensured trustworthiness by ensuring credibility, confirmability, and reflexivity. Confirmability was assured by conducting member-checking with five of the participants a week after the data collection for them to verify the results. None of the participant raised concerns about the content of the transcript. An audit trail of the audio recordings, field notes and transcripts were documented and stored for future confirmatory purposes. For credibility, we carefully recruited participants who met the inclusion criteria. We also transcribed the audio data verbatim to retain the intended meaning of the participants’ narratives. Throughout the data analysis, periodic debriefings were held to agree on the categorisation of codes to form themes and sub-themes. The research team comprised of a trained nurse who is now in academia, oncologists, and a population health scientist. Hence, bringing to the fore diverse experiences that ensured reflexive attitudes. We achieved transferability by providing a thick description of the participants’ characteristics, such as their demographic information, and relationship to the child with cancer. This enables the comparison of the characteristics of the study participants with other populations and assess the potential applicability of the findings to other caregiving contexts.

Ethical consideration

Ethical approval was granted by the Institutional Review Boards at KATH (KATH IRB/AP/025/22). We anonymised the transcripts before initiating data analysis. Informed consent was obtained from the study participants. This written informed consent was obtained from the participants after had read and understood the purpose, scope and procedures for the conduct of the study, as well as their rights as participants. The availability of a professional psychologist was made known to the participants in case they experienced emotional distress while participating in the study. However, none of the participants needed the services of a psychologist. The audio recordings and transcripts were safely stored and encrypted with a password to prevent unauthorised persons from having access to the data. We followed the Standards for Reporting Qualitative Research [ 21 ].

The result from the thematic analysis is presented under three main categories, namely: strains, coping resources, and coping strategies. Under the category of strains, three main themes emerged: somatic strains (includes poor sleep quality and loss of appetite), economic strains (i.e., financial burden associated cost of child’s treatment and loss of economic livelihood), psychosocial strains (i.e., isolation from social activities and network, frustration and helplessness). The following themes emerged as coping resources: family cohesiveness, community support, and support from health care providers. Coping strategies that emerged included trusting in God and being self-motivated.

Somatic strains

From the thematic analysis, it was revealed that there were some somatic strains associated with caregiving activities for children who have been diagnosed with and receiving cancer treatment. According to the caregivers who participated in the study, one of the major strains they encountered was a reduction in their sleep quality. Thus, the participants experienced significant dissatisfaction in sleep efficiency, sleep latency, sleep duration, and wake after sleep onset. In their perspective, this poor sleep quality that was experienced could be attributed to the point that they have to intermittently wake up to check how their child is doing. There were times that the fear of losing their child acted as a catalyst for poor sleep quality. The following quotes reflect the experiences of primary caregivers:

“I sleep less because if the child wakes up, I must also wake up to see the problem at hand. I am tired at every point in time, we travel a lot too. Sometimes, if the child is asleep, I have to wake up to check if there is no bleeding and other stuff like checking how hot she is” (F005).

“I barely sleep. Even if I am able to sleep, I would wake up several times. Sometimes, just the fear that I could lose my child to cancer without being awake to see it scares me to wake up. There are also times that the child will be experiencing pains at night, and so I have to wake up to care for him. So, I have not had a good night sleep since my child was diagnosed of this disease” (M002).

Loss of appetite emerged as another somatic strain that family caregivers experienced. The participants asserted that in the execution of their caregiving role, they often did not feel like eating because they could not bring themselves to eating while their child was experiencing excruciating pains. This is evidenced in the quotes below.

“At the moment, on my part, I’m not sick, but everything about me has changed because of the difficulty. I sometimes skip meals to keep going” (F004).

“Sometimes when I even look at the pains that he’s going through, I lose appetite. It is just recently that I tried eating better” (M001).

Economic strains

This theme describes the monetary or financial challenges that were associated with the caring for a child who has been diagnosed of cancer. Mainly, financial burden associated with the cost of the child’s treatment and loss of economic livelihood were the major economic strains experienced by the primary caregiver.

Financial burden associated with the cost of child’s treatment

Results from the analysis indicates that while the national health insurance scheme (NHIS) does cover aspects of the child’s treatment, there were many other associated costs that was not covered by the insurance. The participants contended that some of the medications were not a part of the health insurance benefit package. Additionally, some laboratory tests and scan services had to be paid out-of-pocket by the family caregiver and their family. Hence, exacerbating their health expenditure and rapidly depleting their finances. One of the participants had this to say:

“My main challenge has been the financial aspects, because for every treatment, I have to pay money. I have to buy medicines. I have to take the child for dressing, and I have to pay every single step of the way. Oh, the health insurance covers some of the medications but most of them have been my burden. I have to pay for them” (F007).

Another participant narrated:

“We pay for all the lab tests ourselves. It is one of the main bills. I wonder what the insurance card is for because we pay for everything that is required. From ultrasound scans to x-rays, where we sleep, the bed and lab tests, almost everything. On some days, 5 different samples are taken for lab tests. That is how the 4000 cedis [$442] plus on the bill came about” (M008).

Loss of economic livelihood

The study also revealed that some family caregivers lost their source of economic livelihood as a direct and indirect result of their caregiving activities. In the perspective of the participants, they had to quit their current employments to be able to focus on providing undistracted caregiving to their child who had been diagnosed of cancer: “I got a job as a cook in a new school in the area for two weeks, then this whole issue started to unfold, so I quit. I had to quit the job; I couldn’t go anymore. I had to stop to care for the child” (F007).

Similarly, there were some participants who lost their jobs and source of economic livelihood not because of a voluntary decision but rather due to limited time to carry out their economic activities. This is what one of the participants had to say: “I’m into network marketing. We do a lot of talking to people to get clients for my business. That is how I earn my commission to cater for myself and my child. Yet, because of my child’s condition, I don’t have that luxury of time to roam around looking for clients. So, in effect, my business is collapsing” (M003).

Psychosocial strains

This theme describes how caregiving for children who have been diagnosed of cancer affects the psychology, emotions, and the social lifestyle of family caregivers. The findings revealed that family caregivers were often isolated from social activities. According to the participants, it was impossible to participate in social gatherings such as festivals, church activities, wedding ceremonies, among others. For instance, one participant had this to say: “I actually do not go anywhere that I must leave my child at home. I’m almost always at home. But before her condition, I could leave her at home and attend social events with my friends. But now, I cannot do that; I just have to isolate myself because I will not get anyone to my daughter’s needs when I am not around” (F007).

Another participant also shared that, “Because of my child’s condition, I cannot participate in normal social activities. I must stay with my child 24/7. That means that wedding, festivals, outings and other social gatherings are a no-go-area for me” (M013).

Concerning the emotions of the participants, it was revealed that frustration and feelings of helplessness was common among the family caregivers. The uncertainties about the treatment outcome of the child were a factor that exacerbated frustration among the family caregivers. Similarly, the inability to do anything to alleviate the child’s pains often resulted in feeling of helplessness among the family caregivers. For the participants, it seemed like they had been abandoned and left to deal with their financial, emotional and somatic challenges on their own. This is reflected in this quote: “The stress alone is not easy. I always feel helpless and frustrated. I don’t know what the outcome will be for my child. Besides my wife, there is no other person that I can share this burden with. And so, it is virtually like we are dealing with our own problem by ourselves. It makes me feel totally helpless” (M004).

The study also revealed that family caregivers struggled to balancing the multiple needs of their families. From the analysis, it is indicative that other members and children of the family required equal attention and support from the caregiver. However, because they unable meet these demands because their priority and attention were skewed towards the child who had cancer. Hence, the needs of other children in the family were significantly affected by the caregiving roles of family caregivers. This assertion is typified in this statement from a mother: “To be honest, I don’t know what is happening with the rest of my kids and my husband. When we started coming to the hospital, I was trying my best to balance everything, but it was not working for me because the child had to be hospitalised for days, and that meant I had to be away from the family. As to whether they [other children and husband] are feeling well, I cannot tell.” (M002).

Another family caregiver expressed the view that he had planned to return to school for his higher degree programme and commit some funds towards his building project. However, due to the caregiving role that he assumed, he had to forgo his decision to return to school to be able to effectively deliver their role as a family caregiver. The amount of money that he had to contribute towards the building project had to be reduced to balance the available resources to facilitate the child’s treatment: “[gasps] I don’t know what to say because balancing my personal needs with the needs of my child has not been easy. I had to abandon my plan to start a postgraduate programme this year. I am also building my own house but now, I cannot spend much money on the project because I must be reasonable and cut off some amount to finance my child’s needs” (M010).

Coping resources

The various coping resources available to the family caregivers are described under this theme. The emerging coping resources included family cohesiveness, community support, and support from healthcare providers.

Family cohesiveness

Family cohesiveness was one of the major resources that enabled the family caregivers to cope with the associated strains of caregiving. The study showed that families came together in solidarity to support the family caregiver to offset part of the cost of treatment. Some participants asserted that their relatives sold their belongings of economic value to raise sufficient funds to assist the family caregiver to afford the cost of treatment for the child. For instance, one of the participants indicated that “My sister’s condition actually brought us all together as one family. Although the cost of treatment was high for me, my family came together to assist me. My mother sells yam, my father sells maize and I sell electrical appliances. We all managed to raise enough whenever the need be” (F006).

Not only did family cohesiveness serve as an important resource to cope with the high health expenditure associated with the child’s treatment. Family cohesiveness also served as a resource that allowed the family caregiver to have someone whom they could rely on for extrinsic motivations in the form of encouragements and goodwill messages. This assertion is evidence in this quote: “In a way though we are trying to console each other but sometimes men usually don’t like demands. It is not like I am dealing with everything by myself now. I can actually rely on my husband and my extended family for encouragement to persevere and do the best for my chid even amidst these circumstances. It has really been instrumental in keeping my hopes alive and morale high for my child” (M006).

Community support

The participants noted that they received support from different sections of the community to help them cope with the strains associated with caregiving for their children who have been diagnosed of cancer. These supports from the community mainly came from significant agencies and agents such as the religious entities and non-governmental organisations (NGO). Religious entities such as the church provided spiritual and psychological support by praying for the caregivers and their families, as well as using scripture to encourage them to not give up on their caregiving activities for the child. This is exemplified in this quote: “My church pastor’s support is mostly about praying with me, consoling me and telling me never to lose hope. Essentially, my church has been an instrumental agent in helping me to cope” (F005).

NGOs served as an essential resource for the caregiver through their donations that helped them to cope with the economic strains. Some NGOs provided funds that contributed to reducing the amount of money that the family caregivers would ordinarily have to pay in full: “Sometimes, we are lucky. Some of the NGOs come around and donate some amount which helps me to manage the high cost of healthcare for my child by cutting down our bills” (M009).

Support from healthcare providers

Another resource that facilitated the coping behaviours of family caregivers was the support that they received from the healthcare providers. Healthcare providers treated family caregivers with respect and dignity. This behaviour from the healthcare providers made the family caregivers to feel comfortable to share their challenges with them. According to the participants, this friendly behaviour of the healthcare providers was relevant in helping family caregivers to maintain a health state of mind: “The doctors and nurses are very caring and friendly and make us feel at home. Because of that, I was able to share my deepest fears and concerns with them, and that helped me to calm down and deal with my anxieties. They [the healthcare providers] don’t know this; but their kind words and friendliness are a powerful tool that allows parents like me to get through the challenge” (F003).

Results from the analysis also showed that some healthcare providers provided family caregivers with money to help them manage the high cost associated with travelling to the health facility for treatment, as well as to reduce the amount of money that they would have paid for laboratory tests. A participant shared this sentiment: “The nurses have been very supportive in helping me to cope with my financial costs associated with my child’s healthcare. When they [health providers] have money on themselves and you are due to do some laboratory tests and chemotherapy, they sometimes pay for me. They sometimes buy some of the medicines for me and even pay my lorry fare” (F005).

Coping strategies

Family caregivers of children who have been diagnosed of cancer adopt certain strategies and behaviours to cope with the various strains that they experience. This theme describes the specific coping strategies adopted by family caregivers. The emerging coping strategies included trusting in God and being self-motivated.

Trusting in God

Trusting or believing in the providence of God was one of the common coping strategies adopted by all the family caregivers who participated in the study. Ghana is a nation dominated by Christians; the participants in this study mainly belonged to Christianity. Hence, the family caregivers relied on stories and characters from the bible who had faced certain traumatic experiences to encourage themselves. These stories restored their shattered hopes, and provided some level of assurance that just as it was with the biblical characters, their moment of relief would eventually come. This assertion is shown the quotes below:

“I hold on to my faith and use some scriptures in the Bible and Bible characters like Job and Joseph to encourage myself and made me believe more that it’s just a test of faith. My latter end will be glorious. Looking at how God helped the other child’s condition to be better, I’ve just put my trust in Him and know that I will be able to go through this phase in my life” (F003).

“Temptations will meet us on the way as Christians. You just have to have the faith to overcome such circumstances. There will always be issues with your kids, you should be able to adjust to suite the current situation. I just liken my child’s condition to the suffering of Job in the bible. That trust I have in my God is what has kept me going” (F005).

Being self-motivated

Some of the participants noted that the strains that they experienced during their caregiving propelled them to adopt active coping strategies like being self-motivated. In the view of the participants, there was no one to provide support to them. Therefore, it was necessary for them to develop an intrinsic motivation to persevere through their challenges. The following quotes reflect this theme:

“I have developed the habit of encouraging myself in this life because nobody cares enough to help. Every day, I tell myself that one day this will pass away” (F004).

“I just encourage myself to move on. There is nothing serious that can do to change my situation. And so, I try to gather strength to go through the psychological trauma and economic challenges” (M004).

Although there are previous studies from Ghana that have discussed the effects of the caregiving on family caregivers of children with cancer, the present study provider deeper insights into the strains, coping resources and coping behaviours of family caregivers of children diagnosed with cancer in Ghana. Poor sleep quality and loss of appetite were the main somatic strains that was experienced by family caregivers of children with cancer. This result is corroborated by earlier studies [ 8 , 11 , 22 ]. Perhaps, the poor sleep quality and loss of appetite experienced by the family caregivers could be explained by the high level of stress and burnout that they experience in executing their caregiving duties. If such patterns in sleep quality and eating pattern continues, it is likely to result in the development of adverse health effects (e.g., obesity, musculoskeletal disorders, and hypertension) among the family caregivers [ 23 ]. Therefore, there is a need for interventions that will attenuate the somatic strains experienced by family caregivers.

Consistent with previous studies [ 11 , 24 , 25 ], the study found that family caregivers encounter economic challenges during the conduct of care roles. Many of the participants had to quit their jobs to be able to effectively care for their child. This result aligns with Patterson et al.’s [ 8 ] study that found economic strains to be among the major impacts of caregiving for children with cancer. Possibly, the findings can be explained from the point that “the trajectory of childhood cancer care is physically demanding; involving long duration, spanning from hours to weeks, months and years” [ 11 ]. Consequently, it demands the family caregiver to be physically present, escorting the child for laboratory test, reviews and treatment. This demand to be physically present exacerbates the likelihood for quit their jobs to care for their child on a full-time basis. Also, the high health expenditure and transportation cost associated with the child’s treatment also worsened the financial wellbeing of the family caregivers. This is synonymous to Renner et al. [ 24 ] and Santacroce et al. [ 25 ] study. Like many low-and-middle-income countries, there are two stages to the treatment of paediatric cancer in Ghana: the initial, hospital-based intense phase, and the subsequent phase which include continuous follow-up visits till recovery [ 26 ]. These phases require the family caregiver to travel to the health facility. This implies that transportation-related costs will be incurred which are not covered by the national health insurance scheme.

The study also revealed that family caregivers of children with cancer in Ghana experienced psychosocial strains. Specifically, the family caregivers intentionally isolated themselves from social gathering activities to have sufficient time to care for their children. Similar findings have been reported by Bekui et al. [ 11 ]. Social isolation has significant implications on the psychological wellbeing of family caregivers [ 27 ]. In this study, the participants asserted that they felt frustrated and helpless as a result of social isolation. Thus, the results call for a conscious effort to enhance the social wellbeing of family caregivers. This could be achieved through the implementation of health education sessions for family caregivers when they accompany their children for treatment. Perhaps, family caregivers can be encouraged to join social groups that constitute other individuals whose children have been diagnosed with cancer.

Notwithstanding the strains that confronted the caregiving experience, family caregivers exploited the available resources, namely: family cohesiveness, community support, and support from healthcare providers. This result is consistent with Patterson et al. [ 8 ] study that showed that family caregivers utilised several resources including family cohesiveness, community support, and support from healthcare providers to cope with the strains of caregiving. The study revealed that NGOs and religious organisations were important resources whose contributions helped family caregivers to cope with the financial and psychosocial strains of caregiving. This observation aligns with a related study from India [ 28 ] that revealed that NGOs play an essential role as a resource that allows family caregivers to cope with the strains of caregiving. Bekui et al. [ 11 ] and Toledano-Toledano et al. [ 29 ] study also corroborates the result that family cohesion and religious support are critical resources that create the opportunity for family caregivers to cope with the strains of executing their care roles.

Consistent with evidence from previous studies [ 6 , 30 ], this study emphasised the significance of religious or spiritual beliefs as a coping strategy for family caregivers. Probably, the findings can be explained from the point that family caregivers’ trust in God restores their shattered hopes, and provides security, solace, sociability, and self-absolution [ 31 ]. The study also suggests that family caregivers draw from their past experiences to intrinsically motivate themselves to cope with the somatic, psychosocial and economic strains that they encounter.

Strengths and limitations

This study was limited to only family caregivers of children/adolescence with cancer who are surviving. As such, the findings do not provide insight about the strains, coping resources and coping strategies adopted my family caregivers of children with cancer who eventually died during the treatment trajectory. Nevertheless, the study’s strength lies in the use of an appropriate qualitative methodology. Also, the authors ensured reflexivity to limit the likely occurrence of researcher bias.

The study concludes that family caregivers experience somatic, economic and psychosocial strains. However, they can leverage available resources (family cohesiveness, community support, and support from health care providers) to cope with these strains. There is a need to educate and sensitise family caregivers about the potential strains that they are likely to experience prior to the assumption of care roles. Also, the formal inclusion of non-governmental organisations and religious bodies will ensure that family caregivers receive sufficient community support to cope with the strains of caregiving.

Data Availability

The data are not publicly available due to the ethical obligation to protect the privacy and anonymity of the research participants. However, the data used to support the findings of this study are available from the corresponding author (ABBM) upon reasonable request.

Abbreviations

Family adjustment and adaptation response

Komfo Anokye Teaching Hospital

Low-and-middle-income countries

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Acknowledgements

We acknowledge all our participants from KATH Paediatric Oncology unit for their time and participation.

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Department of Population and Health, University of Cape Coast, University Post Office, Cape Coast, Ghana

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ABBM conceptualized, designed and advised on study conduct, analysed and interpreted the data, drafted, reviewed and revised the article. HN conceptualized, designed, directed and conducted study, data, reviewed the articled. KBM advised on study conduct, and interpreted the data, and reviewed and revised the article. JO advised on study conduct, analysed and interpreted the data, drafted, reviewed, and revised the article. FA, CA, and JCL advised on study conduct, interpreted the data, reviewed and revised the article. All authors reviewed drafts and approved the article.

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Mensah, A.B.B., Nunoo, H., Mensah, K.B. et al. Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours. BMC Psychol 11 , 361 (2023). https://doi.org/10.1186/s40359-023-01406-w

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Research on Childhood Cancers

In 2013, Phineas Sandi received CAR T-cell therapy for acute lymphoblastic leukemia while participating in an NCI clinical trial. Phineas, holding the syringe that was used to infuse his CAR T cells, is cancer-free.

Why Research is Critical to Progress against Childhood Cancer

Cancer is the leading cause of death from disease among children in the United States. Although substantial progress has been made in the treatment of several types of childhood cancer over the past five decades, progress against other types has been limited. Even when long-term survival is achieved, many survivors of childhood cancer may experience long-term  adverse effects from the disease or its treatment.

Clearly, more research is needed to develop new, more-effective, and safer treatments for childhood cancer. And infrastructure and practices that allow researchers to learn from every child with cancer need to be put in place.

NCI has a number of programs that address childhood cancers specifically, and many of the institute’s other research programs are applicable to children with cancer even if they aren’t focused specifically on pediatric cancers. The institute supports a broad range of biomedical research that is relevant to this population, including:

• Basic research to enhance our understanding of the fundamental mechanisms of cancer
• Clinical research to test new treatments for safety and effectiveness
• Survivorship research to reduce the long-term adverse effects of cancer and its treatment

Dr. Brigitte Widemann Appointed as the Special Advisor to the NCI Director for Childhood Cancer

Brigitte Widemann, MD, Chief of the NCI Center for Cancer Research Pediatric Oncology Branch and practicing pediatric oncologist, has been appointed as Special Advisor to the NCI Director for Childhood Cancer.

Challenges in Childhood Cancer Research

One challenge in conducting research on childhood cancer is that cancers in children and adolescents are relatively uncommon. Childhood cancers represent less than 1% of all new cases of cancer diagnosed in the United States each year. Because the number of children with cancer is small and patients are treated at many different institutions, answering complex biological questions about childhood cancer requires collaboration.

As clinical trials are increasingly restricted to smaller numbers of patients who are defined by the molecular characteristics of their tumors rather than where the tumors originated in the body, collaboration among children’s cancer centers and a strong national clinical research program are essential to ensure that trials enroll sufficient numbers of participants to produce meaningful results.

In addition, more efficient ways to curate and share research knowledge—from genomic data to clinical outcomes—need to be developed to speed progress against childhood cancers.

NCI’s Rare Cancer Clinics Fostering Collaboration

Clinics bring together clinicians, patients, and advocates.

Another challenge is that, although most cancers in children (and adults) are thought to develop as a result of genetic changes that lead to uncontrolled cell growth and eventually cancer, the causes of most of these genetic changes in children are unknown. A small percentage of cancers in children can be linked to inherited genetic changes or to exposure to diagnostic or therapeutic radiation. But environmental causes have not been identified for most childhood cancers. As a result, identifying opportunities to prevent childhood cancer may be difficult.

In addition, the types of cancers children develop, and the biology of those cancers, generally differ from those of cancers diagnosed in adults. For example, tumors that originate in developing organs and tissues (such as retinoblastomas in the eye and osteosarcomas in bone) are more common in children.

Moreover, most childhood cancers have relatively few genetic alterations , and they often lack the genetic targets for treatments that have been developed and approved for cancers occurring in adults. And drugs that target signaling pathways that are active in some adult cancers might be difficult to use in children, given that many of these signaling pathways are essential for normal development.

Investigating Fusion Proteins in Childhood Cancers

The work of NCI’s FusOnc2 Consortium may one day lead to new treatments for children with cancer.

In fact, the genetic changes that drive childhood cancers are often distinct from those in adult cancers. For example, chromosomal translocations that fuse parts of different genes together to form fusion oncoproteins are common in childhood cancer. Although fusion oncoproteins are also found in some adult cancers, those found in children have proven particularly difficult to target. Another contributing factor to the small number of targeted therapies for childhood cancers is that the rarity of these diseases has been an impediment to commercial drug development.

Developing new treatments that are less toxic and cause fewer adverse effects (both acute and late) than current treatments and developing interventions to mitigate the adverse effects of both current and future treatments are additional challenges in childhood cancer research. The late effects of some childhood cancer therapies can have profound physical, emotional, and other consequences for survivors, including a shortened life expectancy. Finding ways to minimize and address these late effects to improve both the quality and the length of life of survivors is a research priority.

More information about cancer drug metabolism in children, which varies with developmental age, is also needed, as are better laboratory and animal models for screening and testing drugs for potential use in children and adolescents. The optimal use of radiation therapy in treating childhood cancers also needs to be defined so that efficacy is maintained or increased while long-term side effects are reduced.

Basic Research Drives Progress against Childhood Cancer

Virtually all progress against cancer in both children and adults has its origins in basic research, often in areas that are not directly related to the disease.

As an example, the discovery of CRISPR-Cas9 for gene editing has revolutionized the study of genes that control cancer cell growth and survival in both childhood and adult cancers. This discovery came from basic research in microbiology on how bacteria resist infections by viruses.

Another example had its origins in basic research on proteins called histones , which are DNA-binding proteins that provide structural support for chromosomes and help control the activity of genes. Scientists spent years investigating how these proteins are modified in the cell nucleus and the role of histone modifications in controlling when and to what extent genes are expressed.

The findings of this research became immediately relevant to a type of pediatric brain tumor called diffuse intrinsic pontine glioma (DIPG)  when it was discovered that most DIPG tumors have a mutation in the gene for the histone protein H3.3 that prevents a specific modification of the protein. This mutation in H3.3 is thought to be a driver mutation for DIPG and is associated with aggressive disease and shorter survival.

Promising Areas of Research on Childhood Cancers

Although our understanding of the biology underlying cancers that occur in children has increased tremendously in the past decade, there are still critical gaps in our knowledge. NCI has identified several areas in which more research is needed and has identified opportunities to use new approaches to gain additional insights into childhood cancers.

Immunotherapies for Childhood Cancers

Immunotherapy Drug Effective in Children with Relapsed Leukemia

In two studies, blinatumomab improved survival and was less toxic than chemotherapy.

Immunotherapies are treatments that restore or enhance the immune system’s ability to fight cancer. The field of cancer immunotherapy research has produced several new methods for treating cancer.

One example is chimeric antigen receptor (CAR) T-cell therapy , which is now used to treat some children with acute lymphoblastic leukemia . This therapeutic approach arose from decades of research on how the immune system works and how to manipulate it for clinical benefit.

The NCI Center for Cancer Research's Pediatric Oncology Branch (POB) conducts clinical trials of immunotherapy in pediatric and young adult patients, and the Children’s Oncology Group (COG) and the Pediatric Brain Tumor Consortium (PBTC) are evaluating immunotherapy treatments for selected childhood cancers. The Cancer Immunotherapy Trials Network (CITN) has a pediatric component that is developing clinical trials to test immunotherapies for children with cancer.

As part of the Cancer Moonshot, NCI has established the  Fusion Oncoproteins in Childhood Cancers (FusOnC2) Consortium , Pediatric Immunotherapy Discovery and Development Network (PI-DDN) , and Childhood Cancer–Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT).

Learn about POB, COG, and the other programs mentioned above in How NCI Programs Are Making a Difference in Childhood Cancer .

Molecularly Targeted Therapies for Childhood Cancers

NCI Research and the National Cancer Plan

The broad variety of research NCI supports on childhood cancers aligns with the goals of the National Cancer Plan. Read about the plan and explore each goal.

Molecularly targeted therapies are drugs or other substances that kill cancer cells by targeting specific molecules that are necessary for cancer cells to grow and survive. These therapies can be small-molecule inhibitors , monoclonal antibodies , or antibody–drug conjugates .

POB conducts clinical trials of targeted therapy in pediatric and young adult patients, and COG and the PBTC are evaluating targeted therapies for selected childhood cancers.

For example, results from an NCI-sponsored clinical trial, conducted by COG and led by Alice Yu, M.D., Ph.D., of the University of California, San Diego, led to the approval of the monoclonal antibody dinutuximab (Unituxin) to treat high-risk neuroblastoma .

Additionally, the PBTC studied the targeted agent selumetinib in children with relapsed or refractory low-grade gliomas . Reductions in tumor size were observed in most patients. Based on these results, COG researchers are studying selumetinib in phase 3 clinical trials for children with newly diagnosed low-grade glioma .

In 2017, NCI and COG launched the NCI–COG Pediatric Molecular Analysis for Therapy Choice (Pediatric MATCH) trial, which is testing molecularly targeted therapies in children with advanced solid tumors that are not responding to treatment. Tumor DNA sequencing is being used to identify those children whose cancers have a genetic abnormality that is targeted by a drug being studied in the trial.

How NCI Programs Are Making a Difference in Childhood Cancer

NCI Fiscal Year 2025 Professional Judgment Budget Proposal

Each year, NCI prepares a professional judgment budget to lead progress against cancer.

NCI recognizes that children are not just small adults and that specialized treatments tailored to childhood cancers are needed. NCI engages with researchers, clinicians, policymakers, advocates, and other partners to address this critical area of research. NCI supports an array of programs specifically to advance childhood cancer care and has renewed these initiatives and programs over numerous funding periods. Some of these programs include:

• The Pediatric Oncology Branch (POB) in NCI’s Center for Cancer Research conducts high-risk, high-impact basic, translational, and clinical research on childhood cancers. For example, POB investigators helped lead a team of international researchers who analyzed data from many patients with rhabdomyosarcoma , a rare childhood cancer that affects the muscles and other soft tissues, and found mutations in several genes that are associated with a more aggressive form of the disease . Genetic clues from the study could lead to more widespread use of tumor genetic testing to predict how children with this cancer will respond to therapy, as well as to the development of targeted treatments for the disease.
• NCI's Division of Cancer Epidemiology and Genetics (DCEG) conducts clinical, genetic, molecular pathology, and epidemiological studies of children at high risk of cancer. For example, DCEG researchers are leading a genome-wide association study of Ewing sarcoma to better understand the genetic architecture of the disease and to identify regions of the genome that may increase risk. DCEG researchers are also studying osteosarcoma to better understand the role that genetic variation plays in risk and patient outcomes and identify genes or genomic regions that may be important in osteosarcoma . The division also studies familial cancer syndromes, including Li-Fraumeni Syndrome , DICER1 syndrome , NF1 , and inherited bone marrow failure syndromes (IBMFS) , to better understand these disorders and investigate possible genotype/phenotype relationships that will improve clinical management and aid in genetic counseling.
• The T herapeutically Applicable Research to Generate Effective Treatments (TARGET) program uses genomic approaches to catalog the molecular changes in several types of childhood cancer to increase our understanding of their pathogenesis, improve their diagnosis and classification, and identify new candidate molecular targets for better treatments. For example, TARGET researchers performed a pan-cancer study of somatic alterations in nearly 1,700 pediatric leukemias and solid tumors and found major genomic differences when compared with adult cancers. The related Cancer Genome Characterization Initiative (CGCI) includes genomic studies of various pediatric cancers that often do not respond well to treatment.

Tailored Radiation for Kids with Medulloblastoma?

Study suggests the volume and dose could be tailored to the genetics of the patient’s tumors.

• The NCI–COG Molecular Analysis for Therapy Choice (Pediatric MATCH) precision medicine trial is a nationwide trial to explore whether targeted therapies can be effective for children and adolescents with solid tumors that harbor specific genetic mutations and have progressed during or after standard therapy. The trial, which is funded by NCI and conducted by COG, opened to patient enrollment in 2017. Germline testing is performed on all enrolled patients to assess whether the genetic aberrations identified in their tumors are inherited. The genomic data captured in the trial will serve as an invaluable resource for researchers seeking to understand the genetic basis of pediatric cancer.
• The Pediatric Brain Tumor Consortium (PBTC) is a multidisciplinary cooperative research organization devoted to identifying better treatment strategies for children with primary brain tumors.
• NCI participates in the Gabriella Miller Kids First Pediatric Research Program , which is building a rich data resource (sponsored by the National Institutes of Health) to increase knowledge about the genetic changes associated with childhood cancers and structural birth defects. The program allows investigators from different research communities to share data and collaborate, and it encourages new ways of thinking about childhood diseases.
• NCI supports several research projects for children, adolescents, and young adults (AYAs) with cancer as authorized by the Childhood Cancer Survivorship, Treatment, Access, Research (STAR) Act . The act enables NCI to enhance biospecimen collection, biobanking, and related resources for childhood and AYA cancers, with an emphasis on those cancer types, subtypes, and their recurrences for which current treatments are least effective.

The CCDI Molecular Characterization Initiative (MCI)

Learn what MCI is and how it’s providing state-of-the-art testing at no cost.

• The Childhood Cancer Survivor Study (CCSS) is examining the long-term adverse effects of cancer and cancer therapy on approximately 35,000 survivors of childhood cancer who were diagnosed between 1970 and 1999. The study was created to gain new knowledge about the long-term effects of cancer and its treatment and to educate survivors and the medical community about the potential impacts of a cancer diagnosis and treatment. The results obtained from CCSS are used to help design treatment protocols and interventions that will improve survival, while minimizing harmful late effects. This research is also used to develop and expand programs for early detection and prevention of late effects in children and adolescent cancer survivors. For example, to better understand the genetic risk of second cancers, DCEG and CCSS researchers are collaborating on studies that aim to identify both common and rare genetic variants that may be associated with second cancers or other late adverse effects among survivors of childhood cancer. In a related study, DCEG scientists also are studying the long-term health of survivors of retinoblastoma , following a cohort of individuals with hereditary or nonhereditary disease to understand how retinoblastoma treatments impact risk for second cancers and long-term mortality.
• The New Approaches to Neuroblastoma Therapy (NANT) Consortium consists of a multidisciplinary team of laboratory and clinical scientists focused on improving outcomes for patients with high-risk neuroblastoma by discovering mechanisms of resistance to therapies, discovering targetable vulnerabilities driving resistance, and translating these insights into clinical trials. NANT works closely with COG to translate their experimental therapy findings into COG phase 3 clinical trials. Their findings on the tumor microenvironment , tumor response to therapy, and the application of cellular therapies to solid tumors have implications beyond neuroblastoma.
• The RACE for Children Act requires that all new adult cancer drugs also be tested in children when the molecular targets are relevant to a childhood cancer. NCI launched the Pediatric Preclinical in Vivo Testing (PIVOT) program to systematically evaluate new agents in genomically characterized models of childhood cancer. The primary goal of the PIVOT program is to develop high-quality preclinical data to help pediatric cancer researchers identify agents that are most likely to show significant anticancer activity when tested in the clinic against selected childhood cancers. NCI also plans to partner with the Food and Drug Administration, academia, and pharmaceutical companies in the Pediatric Preclinical Testing Public-Private Partnership (PPTP3) , which will be established by the Foundation for the National Institutes of Health to accelerate the pace and broaden the scope of pediatric preclinical testing of these agents.
• The Pediatric Genomic Data Inventory (PGDI) is an open-access resource to help researchers access data from genomic sequencing projects for pediatric cancer. The inventory lists ongoing and completed sequencing projects from the United States and other countries, the type of cancer studied, molecular characterization data available, and points of contact for each project.
• The Hyperactive RAS Specialized Programs of Research Excellence (SPOREs) focus on developing better treatments for neurofibromatosis type 1 and related cancers in children, adolescents, and young adults.
• The Fusion Oncoproteins in Childhood Cancers (FusOnC2) Consortium is a multidisciplinary, collaborative network of investigators studying select fusion oncoproteins implicated in childhood cancers that have a high risk of treatment failure and for which there has been little progress in identifying targeted agents.
• The Pediatric Immunotherapy Discovery and Development Network (PI-DDN)  is a collaborative research network identifying and advancing research opportunities for translating immunotherapy concepts for children and adolescents with cancer toward clinical applications. Primary goals of the PI-DDN include the discovery and characterization of immunotherapy targets for childhood and adolescent cancers, the development of new immunotherapy treatment approaches, and an improved understanding of the immunosuppressive tumor microenvironment in order to advance new, more effective immune-based treatment regimens for high-risk pediatric cancers.

Mapping Tumors across Space and Time

A new NCI program will create maps of cancers with unprecedented detail.

• The Pediatric Cancer Immunotherapy Trials Network (CITN) is using the clinical trials infrastructure of the CITN to conduct clinical trials of immunotherapy agents of specific relevance to children and adolescents with cancer. Examples of the types of novel treatments to be investigated by the Pediatric CITN include cellular therapies (e.g., CAR T cells targeting pediatric cancer antigens) and antibody-based therapies, including antibody-drug conjugates, that target surface antigens preferentially expressed on childhood cancers.
• The My Pediatric and Adult Rare Tumor (MyPART) Network  of scientists, patients, family members, advocates, and health care providers is working together to help find new treatments for rare childhood, teen, and young adult solid tumors that have no cures. Working as a team, researchers share data and help design experiments and clinical trials, advocates discuss issues important to patients, and clinicians share their experiences treating rare cancers. MyPART is part of the larger NCI Rare Tumor Patient Engagement Network.
• DCEG researchers collaborate with the International Childhood Cancer Cohort Consortium (I4C) and the Childhood Leukemia International Consortium (CLIC) , collaborations that pool information from cohort studies from around the world to answer questions about childhood cancers. I4C brings together multidisciplinary teams of epidemiologists, basic scientists, and clinicians, to collaborate on investigations into the role of early-life exposures on cancer risk. CLIC includes more than 30 case–control studies and has identified associations between childhood leukemia and environmental risk factors.

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Holes – A Survivor’s College Essay

One year ago, Matthew Buff, a leukemia survivor, was fine-tuning his college applications. Today, he is a busy freshman at Emory University majoring in biology on a pre-med track. Matthew's personal goal is to become a pediatric oncologist focused on genetic research. The following is his college admissions essay. 

A round piece of silicone wrapped in a metal ring about the size of a quarter. If you tip it slightly, at just the right angle, where it catches the light, you would see hundreds of tiny holes covering the entirety of its surface. A miniature vacated battlefield of a war once won. It may not look like much to most people, but this tiny piece of plastic riddled with needle holes called a port or port-a-cath, helped to save my life and is now my visual inspiration to help others.

In the beginning, each hole could have easily represented another round of chemotherapy, spinal tap, blood transfusion, hospitalization, surgery or enrollment into a new study to treat my leukemia. They could also represent another day unable to attend school, each time being isolated from friends, and too many middle-of-the-night trips to the emergency room that would ultimately lead to another round of pokes, tests and abruptly waking to the beeping alarm of my IV pole early the next morning.

However, as my body has recuperated over the past five years since completing cancer treatment, the meaning of each hole has also transformed. Each hole now represents a lesson learned, a person met through my experience and the opportunity to make impactful change or people affected by catastrophic illness.

My parents and doctors have always encouraged me to not let my experience with cancer define me. I believe I have done a good job of incorporating that into my daily life, relationships and pursued interests. However, as I have matured and started to gain new experiences in life, I have chosen to reconnect with my past and allow it to acutely influence my perspective. I can’t help but to see the world from a slightly different angle than my peers after experiencing the delicateness and resiliency of life by age 12. I no longer view those years in and out of the hospital as negative, but a gift to help shape my abilities and sharpen my purpose.

From a very young age, I’ve learned to be an advocate for myself, to be an effective communicator, how to endure and thrive through challenges, become a capable and independent learner and find joy in contributing back to the community that surrounded me during my time of need. I want to now expand on those experiences and create new and meaningful relationships within the college environment that will continue to mold how I see the world and my future contributions within it.

I want to bravely explore other “holes” people have endured within their own lives, sit with them, and begin to find ways to alleviate their struggles through the commonalities of the human experience. If we can appreciate our differences, yet focus on what connects us, I believe there would be more peace in the world and fewer opportunities for any kind of pain and suffering. Empathy and compassion, in combination with technology and research, has the potential to redefine health and care. I intend for my experience and knowledge to be part of this progress.

My current objective is to build my college education with a concentration in biology and life sciences with the goal to become a research oncologist. Beyond my academic interest in those areas, I believe shifting my experiences from patient or receiver of care, to student of science with the intent to deliver care, will provide me the knowledge and holistic perspective to begin to develop the passion and endurance necessary to make a life-long commitment to healing through medicine.

We can’t always choose the experiences that shape us into who we are meant to be, but we can utilize them to empower ourselves, inspire each other and help others. Holes don’t have to be permanent; they can be the necessary foundation to begin to build something important and meaningful. We must be willing to excavate our own comfort, take risk, overcome challenges, plant new footings and create solutions to fill the gaps that are exposed in both our own lives, and in the lives of the people around us. Sometimes, if we look at things from a slightly different angle, like when the light reflects off my port, we can find new solutions to effectively and completely fill each new hole.

Written by Matthew Buff   Matthew was diagnosed with acute lymphoblastic leukemia in March 2009. Now six years beyond treatment, he is a college student working towards his goal of becoming a pediatric oncologist focused on genetic research. 

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More young people are getting cancer. Can I lower my risk?

Cancer rates among people under 50 are on the rise. knowing family history may make you eligible for early screening..

Q: I know someone who was recently diagnosed with breast cancer. She’s in her 40s and totally healthy. Why do people like her get cancer?

A: Cancer rates among people younger than 50 — called early-onset cancer — have been on the rise worldwide since 1990. Men and women in their 40s represent the largest portion of those diagnoses.

While early-onset cancer rates are rising for many kinds of cancers — including breast, uterine, colorectal and prostate — they’re still relatively infrequent. In 2019, early-onset colorectal cancer occurred at a rate of 5.7 per 100,000 people (up from 3.5 in 1990) and breast cancer occurred at a rate or 13.7 per 100,000 people (up from 9.6 in 1990) worldwide.

This is why asking family members of their health history is crucial — it will affect when your physician recommends you get your first mammography or colonoscopy and whether you may need more genetic testing. About a quarter of patients with early-onset colorectal cancer, for instance, have a family history that would have warranted screening earlier than age 45 — a missed opportunity to catch or even prevent those cancers early.

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When my patients ask why people get cancer, I often tell them to think of a tower of blocks. Let’s say it takes 100 blocks for a person to get cancer. Genetics, environment and lifestyle habits can all add blocks to the tower.

Some of us will have genetic mutations we inherit from our parents or will have been exposed to things in the womb that add blocks to that tower before we can crawl. Some of us will grow up in environments where we’re exposed to pollutants in the air, soil or water; live in areas where ultra-processed foods are most plentiful and what our families can afford; or become infected with viruses that stimulate cancer formation — none of which are factors we made a conscious choice about.

And then our age and numerous other exposures and risk factors — many of which scientists have yet to uncover, but include alcohol intake, exposure to UV rays, smoking and obesity — all add more blocks to that tower.

Behind the scenes, our immune system is constantly scrambling to knock blocks off — with variable success rates. No two people are going to acquire the exact same constellation of 100 blocks in the same amount of time, and many will live their whole lives without reaching 100 blocks.

The factors that determine when and how someone’s tower tips over to cancer are unique, not always known and too often beyond individual control. It’s why some people who smoke never get cancer and others who are in peak physical shape still do.

“One of the biggest challenges in dissecting the causes of early-onset cancers is that there is not a single explanation,” said Bilal Siddiqui , an assistant professor and medical oncologist at the University of Texas MD Anderson Cancer Center. “There are multiple environmental factors, and we don’t yet fully understand all of them.”

Why doesn’t the immune system fight off cancer?

Cancers appear in all of us every day — but fortunately, they are typically detected and removed by our immune system.

Several important factors that aid cancer to evade our immune system are modulated by the environment. Smoking, alcohol and genetics are well-known risk factors. Other risk factors that were less common in earlier generations may also explain the rise of young cancers.

Maternal obesity and a high birth weight are associated with an increased risk of colorectal cancer. A rise in sedentary behaviors such as prolonged TV viewing and consuming sugary beverages — all of which are linked to high fasting blood sugar and obesity — have been implicated in early-onset cancers. Younger age at the start of a woman’s first period, older age at first birth and use of birth-control pills all increase the risk of getting breast cancer before menopause. And for early-onset colorectal cancer, consumption of red meat appears to play a detrimental role.

It’s important to remember that almost half of all cancers are preventable, Siddiqui added.

A 2022 study published in the Lancet found that about 44 percent of cancer deaths involved a modifiable risk factor such as tobacco use or air pollution.

Early-life exposures that could lead to cancer are hard to study — imagine being asked today to recall how many minutes you played in the sun 15 years ago. But scientists are working on a variety of approaches to overcome these obstacles — such as scouring electronic health records for objective evidence and analyzing biospecimens such as saliva and stool collected in childhood for clues.

What I want my patients to know

Besides mitigating any known risk factors, we can do a better job in identifying cancer early.

After learning your family history, go get the screening recommended by your doctor. Fewer than 20 percent of people ages 45 to 49 are up to date with colorectal cancer screening, and only about 66 percent of women age 40 and over were up to date with breast cancer screening.

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