Background: Fatigue negatively affects quality of life. We aimed to compare the prevalence of fatigue in survivors of childhood cancer with the Swiss general population, describe longitudinal patterns of fatigue, and identify characteristics associated with persistent fatigue in survivors.

Procedure: In this cohort study, we used data from the Swiss Childhood Cancer Registry and the Swiss Childhood Cancer Survivor Study, including survivors (≥5 years since diagnosis; diagnosed between 1976 and 2015 at <20 years of age) aged ≥20 years at study entry, using data from the baseline and follow-up survey. A representative sample of the general population was used as a comparison group. Fatigue prevalence and fatigue severity were measured using the SF-36 vitality scale, from which we derived longitudinal patterns (no/low fatigue, late onset, improving, persistent). We used multivariable logistic regression to identify clinical, psychosocial and demographic characteristics associated with persistent fatigue.

Results: Overall, 1846 survivors participated at baseline (52% male), and 684 survivors also participated at follow-up (median 9 years from baseline; 52% male). From the general population, 863 persons participated (42% male). Survivors had similar fatigue prevalence at baseline/follow-up (26%/29%) as the general population (26%). No/Low fatigue was experienced by 64%, late onset by 14%, improving by 7%, and persistent fatigue by 15% of survivors. More late effects, psychological distress, pain, and less time spent on moderate-intensity physical activity were associated with persistent fatigue.

Conclusions: This study provides data on longitudinal patterns of fatigue in survivors and identifies factors associated with persistent fatigue that can be used to identify survivors at risk and as a target for interventions aimed at improving fatigue.