{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,5]],"date-time":"2026-09-05T00:02:40Z","timestamp":1788566560829,"version":"build-2803163510"},"reference-count":16,"publisher":"MDPI AG","issue":"22","license":[{"start":{"date-parts":[[2025,11,8]],"date-time":"2025-11-08T00:00:00Z","timestamp":1762560000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Cancers"],"abstract":"<jats:p>Waldenstr\u00f6m Macroglobulinaemia is an indolent disease which is recognised as contributing to a diverse range of disabling symptoms which can impact quality of life. Little data are available in evaluating patient and healthcare professional views on quality-of-life questionnaires (QLQ) used to evaluate quality of life in Waldenstr\u00f6m Macroglobulinaemia. We aimed to assess patient perception of their disease and the relevance of the currently employed QLQs in practice by patients and healthcare professionals. One-hundred-and-twenty patients (22% treatment-na\u00efve) and thirty-four healthcare professionals completed an international survey to understand their perception of the relevance of the currently employed QLQ. Out of 415 questions, 257 questions were classified by patients as relevant. Five themes were discerned as relevant: fatigue, mobility, dyspnoea, paraesthesia, pain in the hands and feet, sleep (physical health limitations); contentment (psychological impact); social and family support. The following were considered irrelevant: lumps or swelling, dry mouth, trouble hearing, sexual dysfunction (physical symptoms); post-traumatic stress (psychological impact); education and training and financial support. Healthcare professionals identified EORTC QLQ-C30 as the most commonly used instruments for Waldenstr\u00f6m Macroglobulinaemia trials.<\/jats:p>","DOI":"10.3390\/cancers17223609","type":"journal-article","created":{"date-parts":[[2025,11,10]],"date-time":"2025-11-10T11:47:27Z","timestamp":1762775247000},"page":"3609","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Patient Perception of the Relevance of Quality-of-Life Questionnaires in Waldenstr\u00f6m Macroglobulinaemia: An International Survey"],"prefix":"10.3390","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4993-7828","authenticated-orcid":false,"given":"Jahanzaib","family":"Khwaja","sequence":"first","affiliation":[{"name":"Department of Haematology, University College London Hospital, London NW1 2BU, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9732-9851","authenticated-orcid":false,"given":"Sotirios","family":"Bristogiannis","sequence":"additional","affiliation":[{"name":"Department of Haematology, Evangelismos Hospital, 10676 Athens, Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ibrahim","family":"Tohidi-Esfahani","sequence":"additional","affiliation":[{"name":"Department of Haematology, Concord Repatriation General Hospital, University of Sydney, Concord 2139, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yadanar","family":"Lwin","sequence":"additional","affiliation":[{"name":"Department of Haematology, Nottingham University Hospital NHS Trust, Nottingham NG7 2GT, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nicole","family":"Japzon","sequence":"additional","affiliation":[{"name":"Department of Haematology, Evangelismos Hospital, 10676 Athens, Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"David","family":"Young","sequence":"additional","affiliation":[{"name":"WMozzies, Australian Affiliate International Waldenstroms Macroglobulinaemia Foundation, Sydney, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7523-7510","authenticated-orcid":false,"given":"Sossana","family":"Delibasi","sequence":"additional","affiliation":[{"name":"Department of Haematology, Evangelismos Hospital, 10676 Athens, Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Shirley","family":"D\u2019Sa","sequence":"additional","affiliation":[{"name":"Department of Haematology, University College London Hospital, London NW1 2BU, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith","family":"Trotman","sequence":"additional","affiliation":[{"name":"Department of Haematology, Concord Repatriation General Hospital, University of Sydney, Concord 2139, Australia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charalampia","family":"Kyriakou","sequence":"additional","affiliation":[{"name":"Department of Haematology, University College London Hospital, London NW1 2BU, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2025,11,8]]},"reference":[{"key":"ref_1","doi-asserted-by":"crossref","first-page":"1944","DOI":"10.1038\/s41375-023-01962-5","article-title":"Correction: \u201cThe 5th edition of The World Health Organization Classification of Haematolymphoid Tumours: Lymphoid Neoplasms\u201d Leukemia. 2022 Jul;36(7):1720-1748","volume":"37","author":"Alaggio","year":"2023","journal-title":"Leukemia"},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"660","DOI":"10.1111\/bjh.17856","article-title":"Primary therapy and relative survival in patients with lymphoplasmacytic lymphoma\/Waldenstr\u00f6m macroglobulinaemia: A population-based study in the Netherlands, 1989\u20132018","volume":"196","author":"Amaador","year":"2021","journal-title":"Br. J. Haematol."},{"key":"ref_3","doi-asserted-by":"crossref","unstructured":"U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research, U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research, and U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health (2006). Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: Draft guidance. Health Qual. Life Outcomes, 4, 79. Available online: https:\/\/hqlo.biomedcentral.com\/articles\/10.1186\/1477-7525-4-79.","DOI":"10.1186\/1477-7525-4-79"},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"441","DOI":"10.1016\/S0895-4356(96)00428-3","article-title":"Validation of the EORTC QLQ-C30 quality of life questionnaire through combined qualitative and quantitative assessment of patient-observer agreement","volume":"50","author":"Groenvold","year":"1997","journal-title":"J. Clin. Epidemiol."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"555","DOI":"10.1002\/jha2.668","article-title":"Systematic literature review of quality-of-life questionnaires in Waldenstr\u00f6m macroglobulinaemia-need for a disease-specific tool","volume":"4","author":"Bristogiannis","year":"2023","journal-title":"EJHaem"},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"e653","DOI":"10.1093\/oncolo\/oyad098","article-title":"Prevalence and Predictors of Physician-Patient Discordance in Prognostic Percep-tions in Advanced Cancer","volume":"28","author":"Han","year":"2023","journal-title":"Oncologist"},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"4249","DOI":"10.1200\/JCO.2012.42.5967","article-title":"Recommendations for Incorporating Patient-Reported Outcomes Into Clinical Comparative Effectiveness Research in Adult Oncology","volume":"30","author":"Basch","year":"2012","journal-title":"J. Clin. Oncol."},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"825","DOI":"10.1007\/s11136-013-0523-5","article-title":"International development of an EORTC questionnaire for assessing health-related quality of life in chronic myeloid leukemia patients: The EORTC QLQ-CML24","volume":"23","author":"Efficace","year":"2013","journal-title":"Qual. Life Res."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"1789","DOI":"10.1080\/14796694.2024.2355079","article-title":"Health-related quality of life in patients with Waldenstr\u00f6m macroglobulinemia: Results from the ASPEN trial","volume":"20","author":"Tedeschi","year":"2024","journal-title":"Futur. Oncol."},{"key":"ref_10","doi-asserted-by":"crossref","first-page":"3376","DOI":"10.1002\/cam4.5080","article-title":"Patient preferences regarding treatment options for Wal-denstr\u00f6m\u2019s macroglobulinemia: A discrete choice experiment","volume":"12","author":"Amaador","year":"2023","journal-title":"Cancer Med."},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"410","DOI":"10.1016\/S1470-2045(11)70098-5","article-title":"Subcutaneous bortezomib: A step towards optimised drug use","volume":"12","author":"Mateos","year":"2011","journal-title":"Lancet Oncol."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"118","DOI":"10.1053\/j.seminhematol.2023.03.006","article-title":"Report of consensus panel 7 from the 11th international workshop on Waldenstr\u00f6m macroglobulinemia on priorities for novel clinical trials","volume":"60","author":"Tam","year":"2023","journal-title":"Semin. Hematol."},{"key":"ref_13","doi-asserted-by":"crossref","first-page":"2654","DOI":"10.1038\/s41375-019-0431-y","article-title":"A revised international prognostic score system for Waldenstr\u00f6m\u2019s macroglobulinemia","volume":"33","author":"Kastritis","year":"2019","journal-title":"Leukemia"},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"1473","DOI":"10.1002\/ajh.25961","article-title":"Younger patients with Waldenstr\u00f6m Macroglobulinemia exhibit low risk profile and excellent outcomes in the era of immunotherapy and targeted therapies","volume":"95","author":"Varettoni","year":"2020","journal-title":"Am. J. Hematol."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"221","DOI":"10.1002\/jha2.640","article-title":"Patient reported outcome measures in Waldenstr\u00f6m macroglobulinaemia: A real-world data analysis from the WMUK Rory Morrison Registry","volume":"4","author":"Khwaja","year":"2022","journal-title":"EJHaem"},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"e299","DOI":"10.1016\/S2352-3026(18)30087-5","article-title":"Treatment and outcome patterns in European patients with Waldenstr\u00f6m\u2019s macroglobulinaemia: A large, observational, retrospective chart review","volume":"5","author":"Buske","year":"2018","journal-title":"Lancet Haematol."}],"container-title":["Cancers"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2072-6694\/17\/22\/3609\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,11,10]],"date-time":"2025-11-10T11:55:50Z","timestamp":1762775750000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2072-6694\/17\/22\/3609"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,11,8]]},"references-count":16,"journal-issue":{"issue":"22","published-online":{"date-parts":[[2025,11]]}},"alternative-id":["cancers17223609"],"URL":"https:\/\/doi.org\/10.3390\/cancers17223609","relation":{},"ISSN":["2072-6694"],"issn-type":[{"value":"2072-6694","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,11,8]]}}}