This Article Free Full Text (Free PDF) Free References Alert me when this article is cited Alert me if a correction is posted Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Google Scholar Articles by Duffey-Lind, E. C. Articles by Park, E. R. Search for Related Content PubMed PubMed Citation Articles by Duffey-Lind, E. C. Articles by Park, E. R. Social Bookmarking                   What's this?

Transitioning to Survivorship: A Pilot Study

Dana-Farber Cancer Institute, Boston, Massachusetts, eileen_duffeylind{at}dfci.harvard.edu

Eileen O’Holleran, MSN, RN, CPNP

Dana-Farber Cancer Institute for the Stem Cell Transplant Program

Martha Healey, MSN, CS, FNP

Canton Center

Margaret Vettese, PhD, RN

Dana-Farber Cancer Institute

Lisa Diller, MD

Dana-Farber/Children’s Hospital Cancer Care, Dana-Farber Cancer Institute and Children’s Hospital Boston

Elyse R. Park, PhD

Massachusetts General Hospital, Departments of Psychiatry and Medicine

There are no clear transition guidelines for adolescent and young adult cancer patients, their parents, and their primary care providers (PCPs) when completing active therapy and within the first few years after therapy. The purpose of this pilot study was to identify needs and concerns of recently treated adolescent cancer patients and their parents, young adult cancer survivors, and the community PCPs of adolescent patients. Four focus group interviews were conducted with survivors and parents, and 3 in-depth interviews were conducted with PCPs. All interviews were audiotaped and transcribed for content analysis. A range of needs were identified, including lack of adequate written and verbal information about their prior treatment, its potential side effects, and appropriate follow-up care. The best sources for education were identified as the primary oncologist, nurse practitioner, or nurse. At completion of treatment, parents and adult survivors felt a lack of psychosocial support. Suggestions from participants included use of informational videos for survivors, weekend education and support programs, ongoing support groups, use of the Internet, and educational newsletters. The PCPs reported a lack of general pediatric oncology knowledge and specific patient information, time constraints in their patient schedules, and having few survivors in their practices as barriers to optimal survivorship care. Further research is needed to look at the unmet educational and psychological needs of childhood cancer survivors and their parents during the critical time when they transition off treatment.

Key Words: transition • adolescent • survivorship • off therapy

CiteULike    Connotea    Del.icio.us    Digg    Reddit    Technorati    What's this?