Influence of Survivorship Care on Health‐Related Quality of Life, Knowledge of Late Effects, and Distress Levels Among Long‐Term Hodgkin Lymphoma Survivors

TL;DR

This study examines how a survivorship care program affects the quality of life, knowledge, and distress levels of long-term Hodgkin lymphoma survivors in the Netherlands.

Contribution

The study evaluates the impact of the BETER survivorship care program on health-related quality of life and survivor perceptions in Hodgkin lymphoma survivors.

Findings

BETER care was not associated with improved health-related quality of life compared to survivors who did not receive the care.

Eighty percent of survivors perceived BETER care as beneficial, particularly due to increased knowledge about late effects.

Survivors' knowledge of late effects was suboptimal, and distress levels were low in both groups.

Abstract

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.

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.

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.

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.

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