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 Swipe
Sidsel J. Juul
,
Sára Rossetti
,
B.M.P. Aleman
,
Flora E. van Leeuwen
,
Marleen A. E. van der Kaaij
,
Francesco Giusti
,
P. Meijnders
,
John Raemaekers
,
Hanneke C. Kluin‐Nelemans
,
Michele Spina
,
Daphné Krzisch
,
Camille Bigenwald
,
Aspasia Stamatoullas
,
Marc André
,
Wouter J. Plattel
,
Martin Hutchings
,
Maja V. Maraldo
·
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1007/s11764-024-01694-0
YOU?
·
· 2024
· Open Access
·
· DOI: https://doi.org/10.1007/s11764-024-01694-0
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.
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- Type
- article
- Language
- en
- Landing Page
- https://doi.org/10.1007/s11764-024-01694-0
- OA Status
- hybrid
- References
- 43
- Related Works
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- OpenAlex ID
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All OpenAlex metadata
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https://openalex.org/W4403537915Canonical identifier for this work in OpenAlex
- DOI
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https://doi.org/10.1007/s11764-024-01694-0Digital Object Identifier
- Title
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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 trialsWork title
- Type
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articleOpenAlex work type
- Language
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enPrimary language
- Publication year
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2024Year of publication
- Publication date
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2024-10-18Full publication date if available
- Authors
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Sidsel J. Juul, Sára Rossetti, B.M.P. Aleman, Flora E. van Leeuwen, Marleen A. E. van der Kaaij, Francesco Giusti, P. Meijnders, John Raemaekers, Hanneke C. Kluin‐Nelemans, Michele Spina, Daphné Krzisch, Camille Bigenwald, Aspasia Stamatoullas, Marc André, Wouter J. Plattel, Martin Hutchings, Maja V. MaraldoList of authors in order
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https://doi.org/10.1007/s11764-024-01694-0Publisher landing page
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YesWhether a free full text is available
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hybridOpen access status per OpenAlex
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https://doi.org/10.1007/s11764-024-01694-0Direct OA link when available
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Medicine, Concordance, Cohen's kappa, Internal medicine, Hodgkin lymphoma, Kappa, Disease, Lymphoma, Philosophy, Computer science, Linguistics, Machine learningTop concepts (fields/topics) attached by OpenAlex
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0Total citation count in OpenAlex
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| referenced_works | https://openalex.org/W3181046270, https://openalex.org/W2156635540, https://openalex.org/W2108285925, https://openalex.org/W2150906637, https://openalex.org/W2093134136, https://openalex.org/W2129451284, https://openalex.org/W2094908065, https://openalex.org/W18593269, https://openalex.org/W2051536310, https://openalex.org/W2021699851, https://openalex.org/W2248977291, https://openalex.org/W1883598689, https://openalex.org/W1895502358, https://openalex.org/W2092192760, https://openalex.org/W2114574605, https://openalex.org/W2125790189, https://openalex.org/W2622274629, https://openalex.org/W2766904028, https://openalex.org/W2053500827, https://openalex.org/W1983897914, https://openalex.org/W2076061140, https://openalex.org/W4294214797, https://openalex.org/W1444168786, https://openalex.org/W2137554140, https://openalex.org/W2069878936, https://openalex.org/W2034234504, https://openalex.org/W1959947112, https://openalex.org/W1997886038, https://openalex.org/W2156760977, https://openalex.org/W2901900435, https://openalex.org/W2118638289, https://openalex.org/W1778235618, https://openalex.org/W2036601036, https://openalex.org/W2026433105, https://openalex.org/W2413118791, https://openalex.org/W2058217833, https://openalex.org/W2328189103, https://openalex.org/W2112477107, https://openalex.org/W3213550748, https://openalex.org/W2331439827, https://openalex.org/W2018385240, https://openalex.org/W4244560311, https://openalex.org/W281780641 |
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