Understanding quality of life issues in patients with advanced melanoma: Phase 1 and 2 in the development of the EORTC advanced melanoma module

M.D. Egeler, M. van Leeuwen, J. Lai-Kwon, H. Eriksson, I. Bartula, S. Elashwah, L. Fox, M. Van Hemelrijck, M. Jefford, J. Lijnsvelt, A-S Lindqvist Bagge, O. Morag, L. Ny, R. Olofsson Bagge, A. Rogiers, R.P.M. Saw, S. Serpentini, L. Iannopollo, J. Thompson, H. Tufvesson StillerN. Vanlaer, A.C.J. van Akkooi, L.V. van de Poll-Franse

Research output: Contribution to journalArticlepeer-review

1 Citation (Scopus)

Abstract

Aims: We aimed to develop a European Organization for Research and Treatment of Cancer (EORTC) Quality of Life (QoL) module tailored for patients with advanced (resectable or unresectable stage III/IV) melanoma receiving immune checkpoint inhibitors or targeted therapy. Methods: Following the EORTC QoL Group module development guidelines, we conducted phases 1 and 2 of the development process. In phase 1, we generated a list of health-related (HR)QoL issues through a systematic literature review and semi-structured interviews with healthcare professionals (HCPs) and patients with advanced melanoma. In phase 2, these issues were converted into questionnaire items to create the preliminary module. Results: Phase 1: we retrieved 8006 articles for the literature review, of which 35 were deemed relevant, resulting in 84 HRQoL issues being extracted to create the initial issue list. Semi-structured interviews with 18 HCPs and 28 patients with advanced melanoma resulted in 28 issues being added to the initial issue list. Following EORTC module development criteria, 26 issues were removed, and two issues were added after review by patient advocates. Phase 2: To ensure uniformity and avoid duplication, 16 issues were consolidated into eight items. Additionally, an independent expert contributed one new item, resulting in a preliminary module comprising 80 HRQoL items. Conclusion: We identified a range of HRQoL issues (dry skin, xerostomia, and arthralgia) relevant to patients with stage III/IV melanoma. Future module development phases will refine the questionnaire. Once completed, this module will enable standardized assessment of HRQoL in patients with (locally) advanced melanoma.

Original languageEnglish
Article number114176
Number of pages8
JournalEuropean Journal of Cancer
Volume207
Early online date11 Jun 2024
DOIs
Publication statusPublished - Aug 2024

Bibliographical note

Funding Information:
This research was funded by the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Group, grant number 1842. The EORTC QLG business model involves license fees for commercial use of their instruments. Academic use of EORTC instruments is free of charge.

Publisher Copyright:
© 2024 Elsevier Ltd

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