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

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

Methods: A Life Situation Questionnaire focusing on late effects collected data from 1230 HL survivors (median follow-up 14.3 years). Twenty-six disease- and treatment-related late effects from various organ systems were matched with physician-recorded data. 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 (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). HL survivors consistently reported a higher prevalence of late effects compared with 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 education level, and treatment initiated at younger ages. Additionally, findings indicated that survivors who did not respond to the questionnaire experienced fewer late effects compared to those who did respond.

Conclusions: Substantial discrepancies were noted in the reported prevalence of late effects between survivors and physicians, especially for outcomes which are not easily quantified.

Implications for cancer survivors: 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.