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.