Approximately 5,000 adolescents ages 14 to 18 years will be diagnosed with cancer each year in the US and an estimated 80% will become long-term survivors. Adolescent cancer long-term survivors have some of the highest risks for treatment-related late effects, predisposing them to cancer-related morbidity and early mortality, as well as negative psychosocial and developmental outcomes. A particularly challenging time for adolescent survivors and their parents is end-of-treatment. End-of-treatment means the adolescent is no longer receiving treatment, and interactions with health care providers become much fewer and less frequent for adolescents and parents. End-of treatment presents intense challenges for adolescents and their parents, but a paucity of studies have described adolescent or parent's experiences at this juncture.
The specific aims of this pilot study are to: 1) Describe and compare the worries, perceived challenges, and ways of managing these issues for adolescent cancer survivors (14 to 18 years) and their parents at end-of-treatment and follow- up;2) Describe the behavioral-emotional functioning of adolescents and parents'anxiety at end-of-treatment and follow-up;and 3) Evaluate the effectiveness of the study's protocol for recruitment of adolescent-parent dyads. Forty participants (20 adolescents, 20 parents) will be recruited from a Comprehensive Cancer Center in the Pacific Northwest. Two subgroups will be recruited: 1) adolescents with acute lymphoblastic leukemia and non-Hodgkin's B-cell lymphoma and their parents and 2) adolescents with solid tumors, Hodgkin's disease, and other non-Hodgkin lymphomas and their parents. Semi-structured telephone interviews will be conducted separately for adolescents and parents within one month of the end-of-treatment and at three and six months. Content analysis with inductive coding will be used to analyze the interview data. Standardized questionnaires will be used to measure adolescents'emotional-behavioral functioning and parental anxiety. Study findings will inform the eventual development of a larger extramural grant and an adolescent-parent intervention to improve end-of-treatment transition. This study will be the first important step in addressing the health and developmental needs of adolescent cancer survivors and their parents after treatment.
Adolescent cancer survivors are at increased risk for severe and life-threatening chronic illnesses as a result of their treatment. This study will describe and compare the worries and challenges adolescents and parents experience at the end-of-treatment, a time when they are no longer receiving treatment and have disengaged from the health care system. Study results will lead to the development of interventions to assist adolescents and their parents at end-of-treatment, empowering them with management strategies to manage the challenges and to engage in long-term follow-up care and healthy lifestyle behaviors.