Lammers Eline M J, Nijdam Annelies, Schaapveld Michael, van de Poll-Franse Lonneke V, Janus Cécile P M, Aarsman Karin M, Te Boome Liane C J, Tomasoa Nathalie B, Boersma Rinske S, Rademakers Saskia E, Stedema Floriske G, Böhmer Lara H, van den Berg Marieke, Kroeze Adriaantje C, Strobbe Leonie S, Deenik Wendy, de Lil Heleen S, van Leeuwen Flora E, Aleman Berthe M P, Zijlstra Josée M
Department of Psychosocial Research & Epidemiology, The Netherlands Cancer Institute, Amsterdam, the Netherlands.
Department of Medical and Clinical Psychology, Tilburg University, Tilburg, the Netherlands.
Cancer Med. 2025 Aug;14(15):e71113. doi: 10.1002/cam4.71113.
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.
霍奇金淋巴瘤（HL）是一种治愈率很高的恶性肿瘤，主要影响年轻人，但幸存者有发生严重晚期不良反应的风险，如心血管疾病和后续恶性肿瘤，这可能会影响健康相关生活质量（HRQoL）。荷兰BETER联盟推出了一项全国性的幸存者护理计划，从诊断后5年起为HL幸存者提供针对晚期效应的定制筛查。本研究评估了BETER幸存者护理与HRQoL、晚期效应知识以及痛苦程度之间的关联。
INSIGHT研究是一项全国性的回顾性队列研究，将自2013 - 2016年以来接受BETER护理的HL幸存者与直到2019 - 2024年才接受幸存者护理的匹配幸存者进行比较。在2021 - 2024年（自HL诊断后的中位时间约25年）使用SF - 36和EQ - 5D - 5L问卷对HRQoL进行横断面评估。使用改良的癌症担忧量表和一份15项知识问卷评估晚期效应知识和痛苦程度。进行多变量负二项回归分析以比较组间结果。
2013 - 2016年以来接受筛查的幸存者（n = 251）与对照组（n = 119）之间的HRQoL结果无显著差异。总体而言，HL幸存者的HRQoL与荷兰普通人群相当。两组对晚期效应的了解都不理想，痛苦程度同样较低。80%的幸存者认为BETER护理有益，大多数人表示知识的增加超过了潜在的担忧。
BETER幸存者护理与长期HL幸存者更好的HRQoL无关，但幸存者认为这种护理是有益的。未来（定性）研究可关注幸存者对晚期效应风险教育的偏好。
