ArticleJournal of cancer survivorship : research and practice2026
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.
Article in Journal of cancer survivorship : research and practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
17 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeStudies looking into the concordance between late effects reported by physicians vs. those reported by Hodgkin lymphoma (HL) survivors are missing.
methodsA 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.
resultsAgreement 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.
conclusionsSubstantial 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.