Follow-up care after childhood cancer: Survivors' expectations and preferences for care

Objective: Given increased survival rates and treatment-related late-effects, follow-up for cancer survivors is increasingly recommended. However, information about adverse events (e.g. possibility of late-effects) may be distressing for the cancer survivor and lead to poor clinic attendance. Survivor satisfaction with appointments and the information provided are important. The Monitoring Process Model provides a theoretical framework to understand how survivors cope with threatening information, and consequences for follow-up care. Our aims were to describe satisfaction with routine follow-up and association between montoring/blunting and satisfaction with care. Methods: 349 patients [aged 18-45 years with a history of haematological, germ cell, breast or childhood cancer, >5 years from diagnosis without relapse (>2 years for germ cell survivors), and with a follow-up appointment during the study period] were identified from hospital databases. Participants completed questionnaires before (T1) and after a routine appointment (T2). Results: 279 (79.9%) questionnaires were completed at T1 and 198 (56.7%) at T2. Clinic satisfaction was higher with shorter waiting time, longer consultation and more topics discussed, but not associated with monitoring. High monitors reported more psychological problems, more importance of clinic attendance and greater value of support groups and professional counselling. Conclusions: Satisfaction with follow-up is high among young adult cancer survivors. Follow-up was rated more highly by higher monitors, supporting previous findings that monitors seek out health care information. Provision of additional support services might increase satisfaction among survivors with psychological and social problems.