Program provides long-term support for childhood cancer survivors
A Rutgers Cancer Institute of New Jersey program is helping childhood cancer survivors understand and cope with the many challenges related to survivorship.
“When patients with pediatric cancer transition to survivorship, they and their caregivers may be more focused on the physical late effects of cancer treatment and may not realize that symptoms of depression and anxiety could also occur,” Margaret Masterson, MD, pediatric hematologist-oncologist at Rutgers Cancer Institute of New Jersey and associate professor of pediatrics at Rutgers Robert Wood Johnson Medical School, said in a press release.
This year’s Survivor’s Family Education Night, which is part of the institute’s Long-term, Information, Treatment effects and Evaluation (LITE) program, aimed to educate childhood cancer survivors about the anxiety, depression and stress that often accompany cancer treatment.
“Through our Survivor’s Family Education Night, we have the ability to provide survivors and families with health information and strategies that benefit both physical and psychological well-being,” Masterson said. “We are grateful to the National Children’s Cancer Society for its continued support of this effort.”
HemOnc Today spoke with Masterson about the program and why it is so important for this patient population.
Question: What need does this program fill ?
Answer: Our LITE program began in 2005 and was created to educate childhood cancer survivors about the long-term effects of cancer treatment. For the past 12 years, we have been hosting the family education night, during which we provide dinner for survivors and their families and discuss educational topics related to their treatment. For example, we have had sessions on the long-term effects of cardiotoxicity and fertility. We polled our families and last year, they wanted to talk about stress, anxiety and other post-traumatic stress symptoms one might have after completing therapy for childhood cancer. We designed this year’s education night around these issues. Our program utilizes a multidisciplinary team approach to provide services, including two pediatric hematologist-oncologists, an advanced practice nurse, a social worker, a nutritionist, several clinical pediatric oncology nurses and access to medical specialists related to the management of long-term side effects.
Q: Who is eligible for the program and how can they participate?
A: Any childhood cancer survivor at least 2 years off treatment is eligible to participate. The program is set up initially as a consultative service, so patients are referred by their primary oncologist. On the first visit, we develop a patient summary that includes their physicians and the treatment they received. We put this in a treatment care plan and develop follow-up care plans based on the therapy patients received. We also review educational handouts regarding late effects that are taken from Children’s Oncology Group guidelines. Survivors then meet with other members of the team, such as the nutritionist and/or the clinical social worker. A clinical psychologist is joining our team this fall.
During the first few years of the program, we go over the follow-up care plan so that survivors understand it. We have annual visits at about 5 years, and we transition survivors to a primary care provider at about 10 years off therapy or 10 years from their high school graduation — whichever comes first.
Q: Why is a program such as this so important for this patient population?
A: There is a tremendous need for long-term follow-up of late effects from treatment. As many as one-third of childhood cancer survivors will have one or more late effects that will be significant enough to impact their life. It is important for survivors to recognize and address this down the line. Fortunately, our survivors mature and go on to college or start their careers. To help them down the road, we offer a program with our population sciences group that teaches survivors self-management skills and how to transition their care, including a peer mentoring program for self-management. We also provide a health fitness program via a mobile app for survivors.
Q: Is there anything else that you would like to mention?
A: This is an exciting and rewarding program. It is important for patients to learn how to transition into survivorship because they have been through so much by the time treatment is over. Survivors have psychosocial and medical needs, and we have to help our patients so they can continue achieve their goals in survivorship. – by Jennifer Southall
For more information:
Margaret Masterson, MD, can be reached at Rutgers Cancer Institute of New Jersey, 195 Little Albany St., New Brunswick, NJ 08903.
Disclosures: Masterson reports no relevant financial disclosures. The LITE program is sponsored by the National Children’s Cancer Society and Rutgers Cancer Institute of New Jersey.