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. 2024 Oct 18.
doi: 10.1007/s11764-024-01694-0. Online ahead of print.

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

Sidsel J Juul  1 , Sára Rossetti  2 , Berthe M P Aleman  3 , Flora E van Leeuwen  4 , Marleen A E van der Kaaij  5 , Francesco Giusti  6   7 , Paul Meijnders  8 , John M M Raemaekers  9 , Hanneke C Kluin-Nelemans  10 , Michele Spina  11 , Daphne Krzisch  12 , Camille Bigenwald  13 , Aspasia Stamatoullas  14 , Marc André  15 , Wouter J Plattel  10 , Martin Hutchings  2   16 , Maja V Maraldo  17   16
Affiliations

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

Sidsel J Juul et al. J Cancer Surviv. .

Abstract

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.

Keywords: Concordance; Hodgkin lymphoma; Late effects; Patient-reported outcomes; Survivorship.

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References

    1. Mohty R, Dulery R, Bazarbachi AH, Savani M, Hamed RA, Bazarbachi A, et al. Latest advances in the management of classical Hodgkin lymphoma: the era of novel therapies. Blood Cancer J. 2021;11(7):1–10. https://doi.org/10.1038/s41408-021-00518-z . - DOI
    1. Di Maio M, Gallo C, Leighl NB, Piccirillo MC, Daniele G, Nuzzo F, et al. Symptomatic toxicities experienced during anticancer treatment: agreement between patient and physician reporting in three randomized trials. J Clin Oncol. 2015;33(8):910–5. https://doi.org/10.1200/JCO.2014.57.9334 . - DOI - PubMed
    1. Basch E, Bennett A, Pietanza MC. Use of patient-reported outcomes to improve the predictive accuracy of clinician-reported adverse events. JNCI J Natl Cancer Inst. 2011;103(24):1808–10. https://doi.org/10.1093/jnci/djr493 . - DOI - PubMed
    1. Fromme EK, Eilers KM, Mori M, Hsieh YC, Beer TM. How accurate is clinician reporting of chemotherapy adverse effects? A comparison with patient-reported symptoms from the Quality-of-Life Questionnaire C30. J Clin Oncol. 2004;22(17):3485–90. https://doi.org/10.1200/JCO.2004.03.025 . - DOI - PubMed
    1. Grossman SA, Sheidler VR, Swedeen K, Mucenski J, Piantadosi S. Correlation of patient and caregiver ratings of cancer pain. J Pain Symptom Manage. 1991;6(2):53–7. https://doi.org/10.1016/0885-3924(91)90518-9 . - DOI - PubMed

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