Project aims to help patients 'cross bridge' to cancer survivorship
One of Dana-Farber's greatest strengths as a leader in pediatric oncology is its emphasis on helping childhood cancer survivors and their families deal with physical and psychological challenges after treatment ends. The Institute's David B. Perini, Jr. Quality of Life Clinic was created for this purpose, but the delicate period when young patients are moving from on- to off-treatment has not received its own focus — until now.
Nurse practitioners Eileen Duffey Lind (left) and Eileen Whyte O'Holleran have teamed up to support young survivors.
Two DFCI pediatric nurse practitioners, Eileen Duffey Lind and Eileen Whyte O'Holleran (both MSN, RN, PNP), are heading a Perini Clinic study developing educational materials to ease this difficult move. They are doing so with assistance from Margaret Vettese, PhD, RN, and Martha Healey, RN, MSN, FNP, of the Phyllis F. Cantor Center for Research in Nursing and Patient Care Services. This is one of two "transition" projects currently supported by the center; the other focuses on young adults with Hodgkin's disease.
Thanks to the team's efforts, each patient finishing therapy in DFCI's Jimmy Fund Clinic will soon receive a notebook filled with such information as a treatment summary, guidelines for future health and other risks (such as infertility or secondary cancers), and precautions they can take. The packet will also introduce patients to the Perini Clinic and include a letter to primary-care providers to help them understand a patient's history, follow-up plan, and restrictions.
"We're taking a specific group that already faces challenges besides cancer — adolescents — and offering them continuity of care as they cross the bridge to off-therapy," explains Whyte O'Holleran. "We hope to both promote their health and prevent further disease, which are the twin hallmarks of the nurse-practitioner profession."
Funded with a grant from the S. Elizabeth O'Brien Trust, this project grew out of observations by these two colleagues — Duffey Lind as a member of the Perini Clinic staff, and Whyte O'Holleran with DFCI's bone marrow transplant program. They noticed that survivors visited the clinic for checkups or with fertility or other concerns when facing major life events, such as marriage, but lacked knowledge about their past care.
"They wondered whether they could have kids, but they wouldn't know what treatments they had received, what they were at risk for, or what tests they should be having," says Duffey Lind. "When you explain it all at once, it's scary. But if they had this information and support beforehand, they would feel more confident."
Encouraged by their respective supervising physicians — Perini Clinic Medical Director Lisa Diller, MD, and Eva Guinan, MD, director of the Pediatric Hematopoietic Stem Cell Transplant Program — and others, the two nurses conducted focus groups in 2002-03 with young survivors and parents for input in developing the notebooks. In addition, they worked with Dana-Farber's Psychosocial Oncology Department to develop a support group to help allay patients' fears around coming off active treatment.
"We found that parents worried most about relapse, and that patients just wanted to move on with their lives," says Whyte O'Holleran. "Some survivors might not know their health risks, while others have unnecessary fears. We want to make sure the right information is available when they want to use it."
