Determining cancer survivors' preferences to inform new models of follow-up care

BACKGROUND: Specialist-led cancer follow-up is becoming increasingly expensive and is failing to meet many survivors' needs. Alternative models informed by survivors' preferences are urgently needed. It is unknown if follow-up preferences differ by cancer type. We conducted the first study to assess British cancer survivors' follow-up preferences, and the first anywhere to compare the preferences of survivors from different cancers. METHODS: A discrete choice experiment questionnaire was mailed to 1201 adults in Northeast Scotland surviving melanoma, breast, prostate or colorectal cancer. Preferences and trade-offs for attributes of cancer follow-up were explored, overall and by cancer site. RESULTS: 668 (56.6%) recipients (132 melanoma, 213 breast, 158 prostate, 165 colorectal) responded. Cancer survivors had a strong preference to see a consultant during a face-to-face appointment when receiving cancer follow-up. However, cancer survivors appeared willing to accept follow-up from specialist nurses, registrars or GPs provided that they are compensated by increased continuity of care, dietary advice and one-to-one counselling. Longer appointments were also valued. Telephone and web-based follow-up and group counselling, were not considered desirable. Survivors of colorectal cancer and melanoma would see any alternative provider for greater continuity, whereas breast cancer survivors wished to see a registrar or specialist nurse, and prostate cancer survivors, a general practitioner. CONCLUSIONS: Cancer survivors may accept non-consultant follow-up if compensated with changes elsewhere. Care continuity was sufficient compensation for most cancers. Given practicalities, costs and the potential to develop continuous care, specialist nurse-led cancer follow-up may be attractive.