Determinants of surveillance for late effects in childhood cancer survivors: a qualitative study using the...

Most adult survivors of childhood cancer do not complete the recommended surveillance tests for late effects of their treatment. We used a theory-informed method to elucidate the barriers and enablers among childhood cancer survivors to accessing such tests.

Semi-structured interviews were completed with adult survivors of childhood cancer. Participants were eligible for the surveillance tests of interest (echocardiogram, mammogram/breast MRI and/or colonoscopy) but had not attended a specialised aftercare clinic in over five years. The Theoretical Domains Framework (TDF), a tool specifically developed for implementation research to identify influences on desired behaviour(s), informed the interview guide and analysis; interview transcripts were coded line-by-line and mapped to domains in accordance with the framework.

Thirty childhood cancer survivors were interviewed (ages 25-60). The TDF domains described by survivors included: intention to complete the tests, which was facilitated by the fear of another cancer (emotion), confidence in the benefits of early detection (beliefs about consequences), and supportive reminders (memory, attention, and decision-making). In contrast, a lack of knowledge of late effects and relevant guidelines and the burden of arranging tests (social identity) were key barriers.

Interventions seeking to increase surveillance testing for late effects may be more effective if they feature components that explicitly address all the theory-informed determinants identified.

Awareness about the recommendations among survivors and their physicians is a necessary (but likely not sufficient) step towards implementation of guidelines regarding surveillance for late effects.