A comparative assessment of attendance and nonattendance at Camp Trillium by children with cancer and their families; including their utilization of health and social services.

BACKGROUND: Camping programs for children with chronic diseases are designed for specific needs, but rigorous evaluation of their impact is largely lacking. The biggest camp for children with cancer and their families provided an opportunity to conduct such an investigation. METHODS: The study sample consisted of 76 attendee and 86 non-attendee families. Parents and children completed a series of validated questionnaires addressing family functioning (the primary effect measure); health-related quality of life (HRQL) of the patients; the children's behavior and relationships; parental behavior, mood and social support; parental nurturance, rejection and monitoring (from the perspective of the children); and a health and social service utilization inventory. RESULTS: The most common diagnoses in the attendee and nonattendee groups were acute lymphoblastic leukemia and central nervous system tumors, respectively. A higher proportion of attendees were receiving active treatment (26.7% vs. 5.8%), almost all for relapsed disease. Parent attendees reported significantly better family function and social support, and parenting skills and coping, than nonattendee parents. The parental proxy assessments of the children's overall HRQL revealed significantly better scores for the attendees, although there was a greater burden of pain among attendees and of cognitive morbidity among nonattendees. Costs related to health care and social services were substantially greater in the attendee families. CONCLUSIONS: Children with cancer cannot be randomized not to attend camp. So the results of this study cannot resolve the conundrum--do better-adapted families attend a camp designed to meet the special needs of their children, or does attendance materially improve the health and welfare of families of children with cancer? However, the very proliferation of such camps is indicative of a need being met and greater efforts should be made to promote the camping experience, and to encourage such children and their families to participate.

The development of an off-therapy needs questionnaire and protocol for survivors of childhood cancer.

The purpose of this project was to obtain input from the families of survivors of childhood cancer regarding their needs surrounding the "coming off treatment" (COT) period. A questionnaire was developed to record their needs, their wishes, and their satisfaction surrounding this period of time. Closer examination of the time surrounding COT was undertaken in an attempt to enhance this area of service for patients and families in our clinic setting. Establishing a structured protocol is likely to alleviate some of the anxiety that surrounds this time for families and help us to provide better continuity of care. After identifying a cohort of patients and families, the reason for the survey was explained and they were asked to complete the questionnaire before they left the clinic setting. At the completion of the study, 82% of the cohort had been approached, and 100% of this group had completed the survey (n = 41). Less than 50% of participants felt they had had a formal "coming off treatment" review but, of that same group, 89% were satisfied with the process. Participants identified areas of importance and health care professionals who they would like involved in the COT process. After reviewing the responses to the questionnaires, the decision was made to proceed in preparing a COT protocol.