Abstract
INTRODUCTION: Hodgkin lymphoma (HL) is a highly curable malignancy mainly affecting young adults, but survivors are at risk of serious late adverse effects, like cardiovascular disease and subsequent malignancies, which may impact health-related quality of life (HRQoL). The Dutch BETER consortium introduced a nationwide survivorship care program offering tailored screening for late effects among HL survivors from 5 years after diagnosis onward. This study evaluates the association between BETER survivorship care and HRQoL, knowledge of late effects, and distress levels. METHODS: The INSIGHT study is a nationwide retrospective cohort study comparing HL survivors who received BETER care since 2013-2016 to matched survivors who did not receive survivorship care until 2019-2024. HRQoL was cross-sectionally assessed in 2021-2024 (median time since HL diagnosis ~25 years) using the SF-36 and EQ-5D-5L questionnaires. Knowledge of late effects and distress levels were evaluated using a modified Cancer Worry Scale and a 15-item knowledge questionnaire. Multivariable negative binomial regression analyses were performed to compare outcomes between groups. RESULTS: HRQoL outcomes showed no significant differences between survivors screened since 2013-2016 (n = 251) and the comparison group (n = 119). Overall, HRQoL of HL survivors matched that of the general population in the Netherlands. Knowledge of late effects was suboptimal in both groups, and distress levels were similarly low. Eighty percent of survivors perceived BETER care as beneficial, with most individuals stating that increased knowledge outweighed potential worries. CONCLUSION: BETER survivorship care was not associated with better HRQoL among long-term HL survivors, but the care was perceived as beneficial by survivors. Future (qualitative) research could focus on survivors' preferences for education about their risk of late effects.