Abstract T063

Concordance between late effects reported by physicians and patients in a cohort of long-term Hodgkin lymphoma survivors: an analysis of data from nine consecutive EORTC-LYSA trials

Background: Studies looking into the concordance between late effects reported by physicians vs. those reported by Hodgkin lymphoma (HL) survivors are missing.

Methods: The EORTC lymphoma group database provides extensive records of the long-term consequences of HL treatment, reported by both patients and physicians. This resource enables the correlation of information from both perspectives. In this retrospective study, survey responses from a total of 1230 long-term HL survivors with a median follow-up time of 14.3 years were included. Twenty-six disease- and treatment-related late effects from various organ systems were assessed. The concordance between physicians and survivors was systematically evaluated using percentage agreement and kappa statistics. Potential non-responder biases and associations with patient and disease characteristics were also investigated.

Results: Agreement levels (as indicated by Kappa statistics) varied from none to moderate agreement, with the highest Kappa values observed for myocardial infarction (kappa = 0.55, 95% CI: 0.43-0.66) and pulmonary embolism (kappa = 0.55, 95% CI: 0.35-0.75). The overall percentage agreement varied from 77.0% for persistent fatigue to 99.5% for bowel perforation. HL survivors consistently reported a higher prevalence of late effects compared to physicians. Notably, the prevalence of subjective symptoms such as persistent fatigue and xerostomia was repeatedly underreported by physicians. A trend towards higher concordance was observed in survivors with higher clinical stage, higher educational level, and treatment initiated at younger ages. Additionally, findings indicated that individuals who did not respond to the questionnaire regarding late effects experienced fewer late effects compared to those who did respond.

Conclusion: Substantial discrepancies were noted in the reported prevalence of late effects between survivors and physicians, especially for outcomes which are not easily quantified. However, potential biases must be considered in these findings, as individuals experiencing more late effects were more likely to respond to the survey. This may reduce some of the observed discrepancies, but our data still emphasize a group of survivors whose needs might be overlooked. It is therefore essential to integrate outcomes reported by both physicians and survivors to achieve a comprehensive assessment of the long-term consequences of HL treatment.