Adult survivors of childhood cancer have long suffered in silence from the overlooked, lingering effects of their disease and treatment. But no more, patient advocates say. They believe that now is the time for clinicians to give survivors the care they need to enjoy a better quality of life.
“The model of we'll just treat and cure you doesn't apply,” said Leah Ellenberg, PhD, Associate Clinical Professor of Psychiatry at the David Geffen School of Medicine at UCLA. “Without a doubt, survivors of childhood cancer need support 10, 20, 30 years later.”
Dr. Ellenberg led a study, in the November issue of Neuropsychology that documented that many adult survivors of childhood cancers of the central nervous system battled lifelong cognitive deficits including poor memory, disorganization, low IQ, and inadequate emotional control.
The data were culled from the Childhood Cancer Survivor Study (CCSS), a multi-site survey of some 14,000 adult survivors of childhood cancer. Since its inception in 1993, the study has brought to light survivors’ everyday physical and psychological challenges. Participants were diagnosed between 1970 and 1986, and had survived at least five years since their diagnosis.
Another CCSS study, this one by Kevin Oeffinger, MD, et al, published in the New England Journal of Medicine in October 2006, showed that 62% of adult survivors of childhood cancer had at least one chronic condition and 27.5% had a condition that was severe or life-threatening. Conditions included osteoporosis, scoliosis, heart disease, stunted growth, premature menopause, and chronic pain.
Thoughts of Suicide
In some survivors, the pain and frustration of late effects were severe enough to make survivors contemplate suicide. Eight percent of CCSS participants reported having thoughts of suicide, according to a study led by Christopher Recklitis, PhD, MPH, a clinical psychiatry instructor at Harvard Medical School and Director of Research at Dana-Farber Cancer Institute's Family Survivors Center.
Suicidal thoughts were even higher in CNS cancer survivors, affecting almost 11%. Survivors who rated their health “poor” had the highest incidence of suicidal ideation— 28.8%.
Latent Effects Long Overlooked
In spite of the prevalence of late effects, childhood cancer survivors historically received little follow-up care. It was overlooked simply because long-term survivorship is relatively new. Before 1970, nearly all juvenile cancer patients died within five years. Today, nearly 80% survive.
“Most weren't told they need ongoing follow-up care” said Nina Kadan-Lottick, MD, MSPH, Assistant Professor of Pediatric Oncology at Yale University School of Medicine and Director of the university's program for childhood-cancer survivors. “The majority of cancer survivors don't identify themselves as having unique health needs.”
CCSS survey data Dr. Recklitis examined supports that notion. Only 20% of his subjects had recently visited an oncology clinic. Thirty percent hadn't had a physical exam within the preceding two years and 19% had gone at least five years without.
With survivors getting such inconsistent care, trends in long-term effects went unnoticed. “We're learning that cancer survivors have these late effects, which are just now being brought to people's attention,” said Merry-Jennifer Markham, MD, who oversees the University of Florida's cancer-survivor program. “A lot of patients have not been followed through adulthood.”
Efforts to address survivors’ overlooked needs got a boost in 2003, when the Institute of Medicine released its Childhood Cancer Survivorship report. The report described the chronic effects of treatment and called for improvement in follow-up care.
Consider Survivorship Care from the Outset
To help patients enjoy the best quality of life after treatment, advocates urge pediatric oncologists to change their focus from treating cancer to promoting lifelong wellness.
“The most important outcome of the CCSS was to demonstrate how survivors of childhood CNS cancers really struggle to successfully have a high quality of life,” Dr. Kadan-Lottick said. “The new definition of treatment success has to include the future.”
Pediatric oncologists can help patients and parents understand the importance of long-term follow-up care by discussing it a number of times, starting at the time of diagnosis.
“Make families aware of the importance of understanding cancer, its health risks, screening that will be needed in the future, and what they need to do for health,” said Melissa M. Hudson, MD, Director of Cancer Survivorship at St. Jude Children's Research Hospital. “They need to think like that from day one.”
Ideally, screening for chronic side effects begins soon after treatment ends.
“Proper screening starts in pediatric cancer clinics,” Dr. Markham said. “That allows us to target kids at risk and refer them for treatment earlier.”
Some of the most common physical late effects are stunted growth, heart abnormalities, infertility, low levels of thyroid hormone, and second cancers. Cognitive deficits are seen more in survivors treated for CNS cancers and some given prophylactic cranial radiation for leukemia.
Children's cancer centers typically offer comprehensive follow-up care including annual exams, support groups, and screening for late effects. Yet few patients continue survivorship care beyond age 21, even though clinicians agree on the need for lifelong care.
“Most [adult childhood-cancer survivors] get medical care from their primary-care doctor,” Dr. Recklitis said of the CCSS participants. “Unfortunately, primary-care doctors may not be aware of all the treatment [study participants] had as a child.”
It then becomes the duty of the pediatric-oncology team to ensure that patients leaving their care visit providers who understand their needs.
“There has to be coordination between the pediatric oncologist and the adult-oncology support team,” Dr. Ellenberg said.
She and other pediatric caregivers recommend that clinicians new to survivorship care use the “Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers,” developed in 2007 by the Children's Oncology Group. The free, 230-page guide covers every facet of survivorship care including clinic staffing, funding sources, and conducting research. It includes model forms for patient histories and medical records. The group's Web site (www.childrensoncologygroup.org) also includes information about late effects for patients and their parents.
The guidelines (which can be downloaded or ordered in paperback at www.survivorshipguidelines.org) are based on patients’ treatment exposures. To help survivors’ physicians use the guidelines, primary oncologists are advised to give each patient a complete cancer-treatment record including every chemotherapy drug and dosage, radiation doses and sites, surgeries, other treatments, and complications. Primary-care clinicians then can use the information to look up the recommended screenings and likely late effects and how they should be managed.
Dr. Recklitis said he looks forward to the day when suicide ideation diminishes in adult survivors of childhood cancer because they get long-term care to manage their late effects.
“Even though survivors are 10 or 20 years post-diagnosis, they may still have significant physical and emotional effects,” he said. “Those most physically compromised may be suffering the most emotionally.”