Preferences for long-term follow-up care in childhood cancer survivors.

Abstract

Follow-up care is important for childhood cancer survivors to facilitate early detection and treatment of late effects. We aimed to describe preferences for different organisational aspects and models of follow-up care among Swiss childhood cancer survivors, and characteristics associated with preferences for different models. We contacted 720 survivors aged 18+ years, diagnosed with cancer after 1990 (age 0-16years), registered in the Swiss Childhood Cancer Registry (SCCR), and Swiss resident, who previously participated in a baseline survey. They received questionnaires to assess attendance and preferences for follow-up (rated on 4-point scales, 0-3). Clinical information was available from the SCCR. Survivors (n=314: response rate 43.6%; 47.8% still attended follow-up) rated clinical reasons for follow-up higher than supportive reasons (p<.001). They rated checking for cancer recurrence (mean=2.78, SD=0.53) and knowing about risks for my children most important (mean=2.22, SD=0.83). They preferred to attend a children's hospital (mean=1.94, SD=1.11), adult hospital (mean=1.86, SD=0.98) or general practitioner (mean=1.86, SD=1.01) rather than a central specialised late effects clinic (mean=1.25, SD=1.06, p<.001), and be seen by paediatric (mean=2.24, SD=0.72) or medical oncologist (mean=2.17, SD=0.69). Survivors preferred decentralised clinic-based follow-up, rather than one central specialised late effects clinic. Survivors' preferences should be considered to ensure future attendance.