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. 2025 Aug;14(15):e71113.
doi: 10.1002/cam4.71113.

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

Eline M J Lammers  1 , Annelies Nijdam  1 , Michael Schaapveld  1 , Lonneke V van de Poll-Franse  1   2 , Cécile P M Janus  3 , Karin M Aarsman  4 , Liane C J Te Boome  5 , Nathalie B Tomasoa  6 , Rinske S Boersma  7 , Saskia E Rademakers  8 , Floriske G Stedema  9 , Lara H Böhmer  10 , Marieke van den Berg  11 , Adriaantje C Kroeze  12 , Leonie S Strobbe  13 , Wendy Deenik  14 , Heleen S de Lil  15 , Flora E van Leeuwen  1 , Berthe M P Aleman  16 , Josée M Zijlstra  17 ; BETER consortium
Affiliations

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

Eline M J Lammers et al. Cancer Med. 2025 Aug.

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.

Keywords: Hodgkin lymphoma; distress; health‐related quality of life; knowledge; patient‐reported outcomes; survivorship care; worries.

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Conflict of interest statement

The authors declare no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Flow chart summarizing study inclusion. 1By study protocol, survivors could not be included in this group when they had received care according to the BETER guidelines before 2019. 2LATER is the Dutch survivorship care program for childhood cancer survivors. 3These survivors were not selected for inclusion based on the frequency matching criteria (methods, section study population, and design).
FIGURE 2
FIGURE 2
EQ‐5D‐5L subscale scores and a histogram showing the density of the overall health visual analogue scale (VAS) scores in survivors followed at a BETER clinic from 2013–2016 (n = 244, excluding 7 missing values) and in those without survivorship care until 2019–2024 (n = 111, excluding 8 missing values).
FIGURE 3
FIGURE 3
Histograms showing the density of the SF‐36 subscale scores for survivors followed at a BETER clinic since 2013‐2016 and for those without survivorship care until 2019–2024.
See this image and copyright information in PMC

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