The Cancer Survivorship Program was established in 2003 as part of the general pediatric oncology clinic at Georgetown Lombardi Comprehensive Cancer Center, and was initially staffed by one pediatric oncologist, Dr. Aziza Shad. In addition to addressing specific issues related to the late effects of treatment, the program created comprehensive “off-therapy” summaries for every patient who completed treatment; as it was evident that this information would be vitally important for patients and their primary care providers. As the program became more established, patient families came forward to help fund staff positions and research projects. In 2004, a generous grant from the Hyundai Motor America Corporation helped to support a nurse practitioner’s salary and to expand the clinic to what is now the Cancer Survivorship Program. This funding has continued over the last five years, and made possible the programmatic growth that has enabled the program to provide better care for childhood cancer survivors – not just those treated at Georgetown Lombardi, but patients from the greater Washington, DC area and beyond. In addition, the funding helped initiate much needed research in this field.
Dr. Shad leads a collaborative team composed of pediatric oncologists, pediatric oncology nurses, social workers, psychologists, patient advocates, nutritionists, clinical research associates, chaplains and art therapists – all of whom provide care to the 80% of children who will survive cancer into adulthood. However, no treatment is without undesirable effects. As childhood cancer survivors grow into adolescents and young adults, some are at risk of developing complications related to the very treatments that saved their lives. No longer can pediatric oncologists walk away from the responsibility of monitoring these survivors for late effects of treatment; most of which appear years after remission or cure, and range from physical to educational to psychological issues.
The Cancer Survivorship Program has three goals: (1) to provide services, including education and follow-up care, for pediatric cancer survivors; (2) to establish a “transition clinic” to reach out to the young adults treated by Georgetown Lombardi's adult cancer programs – many of whom have several survivorship issues in common with the pediatric population; and (3) to continue to focus on clinical research in cancer survivorship.
To accomplish these goals the program aims to: (1) screen patients for various types of medical and psychosocial late effects; (2) assess financial/occupational difficulties and identify appropriate resources; (3) provide or arrange neuropsychological testing for evaluation of emotional and learning ability concerns; (4) educate families and/or patients about previous diagnosis, treatment and potential cancer survivorship issues for early detection and intervention; and (5) expand its database to facilitate longitudinal research on survivors of childhood cancer.
In 2006, Georgetown University hosted the first comprehensive conference on pediatric cancer, which brought together survivors, their families, cancer organizations, and other academic institutions. Based on its success, a subsequent conference was held in 2008 in partnership with the Children’s Cause for Cancer Advocacy and Special Love. A significant take-away from the 2008 event was that many parents suffer from post-traumatic stress syndrome in the wake of a child’s diagnosis and treatment. As a result, the Cancer Survivorship Program offered a series of meetings on the topic.
Another of the program’s greatest achievements came with the 2008 publication of The Next Step…Crossing the Bridge to Survivorship, by Dr. Shad and Karen Hennessey, PNP. Written for cancer patients and their families, the book is customized to include individualized patient information. To date, 500 copies have been provided to families free of charge. A second edition of the book is in preparation and will be provided in paperback version at a reduced cost. A second book for primary care providers (family physicians, internists, pediatricians, ob/gyns, nurse practitioners, and physicians assistants), co-authored by Dr. Shad and Dr. Gregory Reaman of the Children’s Oncology Group, is planned for 2010.
In recent years, expansion of the program’s patient population and the initiation of the cancer survivorship database has created opportunities to engage in research, organize outreach events, and educate about the importance of post-treatment care. Georgetown Lombardi also participates in Passport to Care, a multi-institutional individualized database for pediatric cancer patients. Current research is focused on psychosocial issues, post-traumatic stress syndrome, fertility, and neuropsychological late effects. A recent study explored instances of cigarette use, insufficient physical activity and sun exposure in adolescent cancer survivors, as well as the effect that stress has on a youth’s ability to protect his health. The database is a critical tool which allows us to design additional studies on cancer survivorship which we expect will result in publications.
In 2009, the Survivorship Program realized its goal of establishing a “transition clinic,” by hiring Dr. Bhumika Gandhi to provide long term follow-up care for young adults in the program. There has been a growing need for access to high quality, follow-up cancer care through primary care physicians for young adult cancer survivors (age 18+), especially as they are transitioning from pediatric to adult medicine. With a combined residency in medicine and pediatrics, Dr. Gandhi is a very important addition to the program. Many young adult patients do not have a primary care provider, and Dr Gandhi, with her knowledge of late effects of childhood cancer, will effectively provide that care. She will also participate in the clinical research projects that are currently being designed. This is the first-ever “transition clinic” to be established in our area, and will serve as a model of care.
In July 2010, a second child psychologist, Dr. Paul Jones, will be joining our team to work with our teens and young adult survivors. Dr Jones comes to us from the NIH, where he has participated in meaningful research addressing post traumatic stress syndrome and other psychological side effects of treatment. He will continue this research at Georgetown Lombardi while focusing on our patient population. One important research project we expect to initiate in 2010 will focus on promoting emotional wellness in kids with cancer through Mindfulness Based Stress Reduction, which teaches self care and stress management to youth. Dr. Jones is a trained instructor in MSRB and considered to be an expert in this area.
This year we have also entered the final planning stages for a comprehensive School Re-entry Program to be initiated in 2010. As our pediatric patients make the transition back to school, they will receive a formal evaluation of their neurocognitive skills from a neuropsychologist, followed by a consultation with an educational consultant. The neuropsychologist will evaluate and provide remedial techniques to assist children with learning, while the educational consultants will guide and advocate for children with learning difficulties, and assist older patients in choosing appropriate colleges. In addition to providing these much needed services, there will be a strong research component to the program. We are currently designing a study for children who received high doses of Methotrexate and/or cranial irradiation. We wish to study the neuropsychological testing and its ability to identify specific problematic areas of learning. While IEP’s and traditional strategies are important, we wish to implement and evaluate innovative strategies to improve cognitive skills.
