{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T18:00:16Z","timestamp":1781200816588,"version":"3.54.1"},"reference-count":81,"publisher":"Public Library of Science (PLoS)","issue":"6","license":[{"start":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T00:00:00Z","timestamp":1781136000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100007366","name":"Fondazione Italiana Sclerosi Multipla","doi-asserted-by":"publisher","award":["FISM 2022\/PR-Multi\/001"],"award-info":[{"award-number":["FISM 2022\/PR-Multi\/001"]}],"id":[{"id":"10.13039\/100007366","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100003196","name":"Ministero della Salute","doi-asserted-by":"publisher","award":["RRC"],"award-info":[{"award-number":["RRC"]}],"id":[{"id":"10.13039\/501100003196","id-type":"DOI","asserted-by":"publisher"}]},{"name":"the Italian Ministry of University and Research","award":["PRIN 2022 (Project No. 2022CA2FK8)"],"award-info":[{"award-number":["PRIN 2022 (Project No. 2022CA2FK8)"]}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS One"],"abstract":"<jats:sec id=\"sec001\">\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Multiple sclerosis (MS) significantly affects individuals\u2019 health-related quality of life (HRQoL). Ideally, HRQoL assessment tools for MS should be patient-centered, ensuring that each item meaningfully contributes to measurement precision. The present study has three main objectives: (1) a review of the literature to identify key HRQoL domains by examining existing instruments; (2) confirmation and integration of HRQoL domains based on stakeholders\u2019 input; (3) systematic comparison of the categories and subcategories identified by the stakeholders with the domains identified in the literature review.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec002\">\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Findings from the literature review were discussed in four focus group meetings (FGMs) with key stakeholders, including people with MS (PwMS) and healthcare professionals (HPs). Participants were purposively sampled to ensure diversity in geographic location, gender, education, and (for PwMS) disease severity. FGMs were audio-recorded, transcribed verbatim, and analyzed using qualitative content analysis by two independent researchers. The categories and subcategories generated from the qualitative analysis were then systematically compared with the items of the MS-specific HRQoL instruments identified in the literature review, by two independent researchers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec003\">\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Out of 5190 references, 308 records related to 9 instruments were included in the literature review. The main HRQoL domains were then extracted and discussed with the steering committee, and informed the FGM grids. The results validated the HRQoL domains identified in literature and provided deeper insights into their complexity.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"sec004\">\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>This study confirmed and added granularity to the existing HRQoL domains relevant to PwMS, identifying key areas for inclusion in future research. The findings contribute to the development of a more comprehensive, patient-centered HRQoL assessment tool, which could inform targeted interventions to enhance quality of life in PwMS.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1371\/journal.pone.0349034","type":"journal-article","created":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T17:27:21Z","timestamp":1781198841000},"page":"e0349034","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":0,"title":["Quality of life domains revised by people with multiple sclerosis and healthcare professionals for adaptive measure development"],"prefix":"10.1371","volume":"21","author":[{"given":"Ambra Mara","family":"Giovannetti","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4466-9788","authenticated-orcid":true,"given":"Andrea","family":"Giordano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9769-4576","authenticated-orcid":true,"given":"Edoardo","family":"Donarelli","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giulia","family":"Di Domenico","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Giampaolo","family":"Brichetto","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eleonora","family":"Cocco","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Francesco","family":"Patti","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachele","family":"Paolucci","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9930-7579","authenticated-orcid":true,"given":"Alessandra","family":"Solari","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silvia","family":"Testa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosalba","family":"Rosato","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"on behalf of the INITIALISE project","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"340","published-online":{"date-parts":[[2026,6,11]]},"reference":[{"key":"pone.0349034.ref001","volume-title":"McAlpine\u2019s multiple sclerosis","author":"A Compston","year":"2006","edition":"4"},{"issue":"11","key":"pone.0349034.ref002","doi-asserted-by":"crossref","first-page":"1022","DOI":"10.1212\/WNL.0000000000000768","article-title":"Atlas of multiple sclerosis 2013: A growing global problem with widespread inequity","volume":"83","author":"P Browne","year":"2014","journal-title":"Neurology"},{"issue":"1","key":"pone.0349034.ref003","doi-asserted-by":"crossref","first-page":"43","DOI":"10.1038\/s41572-018-0041-4","article-title":"Multiple sclerosis","volume":"4","author":"M Filippi","year":"2018","journal-title":"Nat Rev Dis Primers"},{"issue":"13","key":"pone.0349034.ref004","doi-asserted-by":"crossref","first-page":"938","DOI":"10.1056\/NEJM200009283431307","article-title":"Multiple sclerosis","volume":"343","author":"JH Noseworthy","year":"2000","journal-title":"N Engl J Med"},{"issue":"9313","key":"pone.0349034.ref005","doi-asserted-by":"crossref","first-page":"1221","DOI":"10.1016\/S0140-6736(02)08220-X","article-title":"Multiple sclerosis","volume":"359","author":"A Compston","year":"2002","journal-title":"Lancet"},{"issue":"1","key":"pone.0349034.ref006","doi-asserted-by":"crossref","first-page":"67","DOI":"10.1177\/1352458506071161","article-title":"Anxiety disorders and their clinical correlates in multiple sclerosis patients","volume":"13","author":"M Korostil","year":"2007","journal-title":"Mult Scler"},{"issue":"4","key":"pone.0349034.ref007","doi-asserted-by":"crossref","first-page":"469","DOI":"10.1136\/jnnp.2004.054635","article-title":"Depression in multiple sclerosis: A review","volume":"76","author":"RJ Siegert","year":"2005","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"5","key":"pone.0349034.ref008","doi-asserted-by":"crossref","first-page":"397","DOI":"10.1007\/s11910-010-0132-4","article-title":"Quality of life in multiple sclerosis: Determinants, measurement, and use in clinical practice","volume":"10","author":"DM Miller","year":"2010","journal-title":"Curr Neurol Neurosci Rep"},{"issue":"2","key":"pone.0349034.ref009","doi-asserted-by":"crossref","first-page":"210","DOI":"10.1017\/S0317167100013755","article-title":"Perceptions of health status in multiple sclerosis patients and their doctors","volume":"40","author":"M Kremenchutzky","year":"2013","journal-title":"Can J Neurol Sci"},{"issue":"2","key":"pone.0349034.ref010","doi-asserted-by":"crossref","first-page":"113","DOI":"10.1046\/j.1524-4733.1999.02210.x","article-title":"Recommendations for evaluating the validity of quality of life claims for labeling and promotion","volume":"2","author":"NK Leidy","year":"1999","journal-title":"Value Health"},{"key":"pone.0349034.ref011","article-title":"Conceptualization and measurement of health-related quality of life: comments on an evolving field","volume":"84","author":"JE Ware","year":"2003","journal-title":"Arch Phys Med Rehabil"},{"key":"pone.0349034.ref012","doi-asserted-by":"crossref","first-page":"114","DOI":"10.1093\/oso\/9780192622976.003.0010","article-title":"Health care technology assessment and health-related quality of life","volume-title":"Health care technology and its assessment: an international perspective","author":"DA. Revicki","year":"1993"},{"key":"pone.0349034.ref013","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1186\/1477-7525-3-16","article-title":"Role of health-related quality of life measures in the routine care of people with multiple sclerosis","volume":"3","author":"A Solari","year":"2005","journal-title":"Health Qual Life Outcomes"},{"issue":"2","key":"pone.0349034.ref014","doi-asserted-by":"crossref","first-page":"101","DOI":"10.1192\/bjp.180.2.101","article-title":"Psychiatrists in the UK do not use outcomes measures","volume":"180","author":"SM Gilbody","year":"2002","journal-title":"Br J Psychiatry"},{"issue":"33","key":"pone.0349034.ref015","doi-asserted-by":"crossref","first-page":"155","DOI":"10.1093\/jncimonographs\/lgh017","article-title":"Taking stock of health-related quality-of-life measurement in oncology practice in the United States","author":"MS Donaldson","year":"2004","journal-title":"J Natl Cancer Inst Monogr"},{"key":"pone.0349034.ref016","doi-asserted-by":"crossref","first-page":"42","DOI":"10.1186\/s41687-018-0061-6","article-title":"How do patient reported outcome measures (PROMs) support clinician-patient communication and patient care? A realist synthesis","volume":"2","author":"J Greenhalgh","year":"2018","journal-title":"J Patient Rep Outcomes"},{"key":"pone.0349034.ref017","doi-asserted-by":"crossref","DOI":"10.1007\/978-0-387-85461-8","volume-title":"Elements of adaptive testing","author":"WJ van der Linden","year":"2010"},{"key":"pone.0349034.ref018","doi-asserted-by":"crossref","DOI":"10.4324\/9781410605931","volume-title":"Computerized adaptive testing: a primer","author":"H Wainer","year":"2000","edition":"2"},{"issue":"1","key":"pone.0349034.ref019","doi-asserted-by":"crossref","first-page":"1","DOI":"10.1191\/1352458503ms888oa","article-title":"Factors that predict health-related quality of life in patients with relapsing-remitting multiple sclerosis","volume":"9","author":"DM Miller","year":"2003","journal-title":"Mult Scler"},{"issue":"4","key":"pone.0349034.ref020","doi-asserted-by":"crossref","first-page":"404","DOI":"10.1191\/1352458503ms927oa","article-title":"Cognitive impairment in multiple sclerosis does not affect reliability and validity of self-report health measures","volume":"9","author":"SM Gold","year":"2003","journal-title":"Mult Scler"},{"key":"pone.0349034.ref021","doi-asserted-by":"crossref","DOI":"10.1097\/01.mlr.0000250483.85507.04","article-title":"Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the Patient-Reported Outcomes Measurement Information System (PROMIS)","volume":"45","author":"BB Reeve","year":"2007","journal-title":"Med Care"},{"issue":"3","key":"pone.0349034.ref022","doi-asserted-by":"crossref","first-page":"315","DOI":"10.1007\/s11136-005-3214-z","article-title":"Multidimensional computerized adaptive testing of the EORTC QLQ-C30: Basic developments and evaluations","volume":"15","author":"MA Petersen","year":"2006","journal-title":"Qual Life Res"},{"issue":"3","key":"pone.0349034.ref023","doi-asserted-by":"crossref","first-page":"491","DOI":"10.1007\/s11136-012-0179-6","article-title":"Content-balancing strategy in bifactor computerized adaptive patient-reported outcome measurement","volume":"22","author":"Y Zheng","year":"2013","journal-title":"Qual Life Res"},{"issue":"4","key":"pone.0349034.ref024","doi-asserted-by":"crossref","first-page":"1041","DOI":"10.1007\/s11136-017-1553-1","article-title":"Modernizing quality of life assessment: Development of a multidimensional computerized adaptive questionnaire for patients with schizophrenia","volume":"27","author":"P Michel","year":"2018","journal-title":"Qual Life Res"},{"issue":"14","key":"pone.0349034.ref025","doi-asserted-by":"crossref","DOI":"10.1097\/MD.0000000000003068","article-title":"A Multidimensional computerized adaptive short-form quality of life questionnaire developed and validated for multiple sclerosis: The MusiQoL-MCAT","volume":"95","author":"P Michel","year":"2016","journal-title":"Medicine (Baltimore)"},{"issue":"8801","key":"pone.0349034.ref026","doi-asserted-by":"crossref","first-page":"1088","DOI":"10.1016\/0140-6736(92)90673-Q","article-title":"Individual quality of life in patients undergoing hip replacement","volume":"339","author":"CA O\u2019Boyle","year":"1992","journal-title":"Lancet"},{"key":"pone.0349034.ref027","doi-asserted-by":"crossref","first-page":"133","DOI":"10.1007\/s11136-007-9204-6","article-title":"The future of outcomes measurement: Item banking, tailored short-forms, and computerized adaptive assessment","author":"D Cella","year":"2007","journal-title":"Qual Life Res"},{"key":"pone.0349034.ref028","doi-asserted-by":"crossref","first-page":"106","DOI":"10.1186\/s12955-014-0106-3","article-title":"Identifying key domains of health-related quality of life for patients with chronic obstructive pulmonary disease: The patient perspective","volume":"12","author":"MCS Paap","year":"2014","journal-title":"Health Qual Life Outcomes"},{"issue":"1","key":"pone.0349034.ref029","doi-asserted-by":"crossref","first-page":"299","DOI":"10.1007\/s11136-013-0455-0","article-title":"The use of focus groups to develop a culturally relevant quality of life tool for lymphatic filariasis in Bangladesh","volume":"23","author":"L Zeldenryk","year":"2014","journal-title":"Qual Life Res"},{"issue":"1","key":"pone.0349034.ref030","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1002\/(SICI)1099-1611(199703)6:1<13::AID-PON231>3.0.CO;2-S","article-title":"Quality of life in breast cancer survivors as identified by focus groups","volume":"6","author":"BR Ferrell","year":"1997","journal-title":"Psychooncology"},{"issue":"1","key":"pone.0349034.ref031","doi-asserted-by":"crossref","first-page":"25","DOI":"10.1093\/geront\/39.1.25","article-title":"Conceptualization and measurement of quality of life in dementia: The dementia quality of life instrument (DQoL)","volume":"39","author":"M Brod","year":"1999","journal-title":"Gerontologist"},{"issue":"1","key":"pone.0349034.ref032","doi-asserted-by":"crossref","first-page":"71","DOI":"10.1023\/A:1016659917227","article-title":"Health-related quality of life in childhood disorders: A modified focus group technique to involve children","volume":"10","author":"GM Ronen","year":"2001","journal-title":"Qual Life Res"},{"issue":"1","key":"pone.0349034.ref033","doi-asserted-by":"crossref","first-page":"55","DOI":"10.1016\/j.ejca.2005.06.022","article-title":"The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care","volume":"42","author":"M Groenvold","year":"2006","journal-title":"Eur J Cancer"},{"issue":"7","key":"pone.0349034.ref034","doi-asserted-by":"crossref","first-page":"690","DOI":"10.1002\/pon.1295","article-title":"The clinical value of quality of life assessment in oncology practice-a qualitative study of patient and physician views","volume":"17","author":"G Velikova","year":"2008","journal-title":"Psychooncology"},{"issue":"1","key":"pone.0349034.ref035","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1002\/msc.222","article-title":"Which dimensions of fatigue should be measured in patients with rheumatoid arthritis? A Delphi study","volume":"10","author":"S Nikolaus","year":"2012","journal-title":"Musculoskeletal Care"},{"issue":"8","key":"pone.0349034.ref036","doi-asserted-by":"crossref","first-page":"1087","DOI":"10.1007\/s11136-010-9677-6","article-title":"PRO development: Rigorous qualitative research as the crucial foundation","volume":"19","author":"KE Lasch","year":"2010","journal-title":"Qual Life Res"},{"key":"pone.0349034.ref037","doi-asserted-by":"crossref","first-page":"15","DOI":"10.1186\/1477-7525-12-15","article-title":"Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: Eliciting patients\u2019 experience","volume":"12","author":"A Br\u00e9dart","year":"2014","journal-title":"Health Qual Life Outcomes"},{"issue":"8","key":"pone.0349034.ref038","doi-asserted-by":"crossref","first-page":"967","DOI":"10.1016\/j.jval.2011.06.014","article-title":"Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: part 1--eliciting concepts for a new PRO instrument","volume":"14","author":"DL Patrick","year":"2011","journal-title":"Value Health"},{"issue":"8","key":"pone.0349034.ref039","doi-asserted-by":"crossref","first-page":"978","DOI":"10.1016\/j.jval.2011.06.013","article-title":"Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO Good Research Practices Task Force report: part 2--assessing respondent understanding","volume":"14","author":"DL Patrick","year":"2011","journal-title":"Value Health"},{"issue":"9","key":"pone.0349034.ref040","doi-asserted-by":"crossref","first-page":"1263","DOI":"10.1007\/s11136-009-9540-9","article-title":"Qualitative research and content validity: Developing best practices based on science and experience","volume":"18","author":"M Brod","year":"2009","journal-title":"Qual Life Res"},{"key":"pone.0349034.ref041","doi-asserted-by":"crossref","first-page":"79","DOI":"10.1186\/1477-7525-4-79","article-title":"Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: draft guidance","volume":"4","author":"US Food and Drug Administration, Center for Drug Evaluation and Research, Center for Biologics Evaluation and Research, Center for Devices and Radiological Health","year":"2006","journal-title":"Health Qual Life Outcomes"},{"issue":"6","key":"pone.0349034.ref042","doi-asserted-by":"crossref","first-page":"342","DOI":"10.1097\/01376517-200712000-00005","article-title":"Using focus groups to inform the Neuro-QOL measurement tool: Exploring patient-centered, health-related quality of life concepts across neurological conditions","volume":"39","author":"L Perez","year":"2007","journal-title":"J Neurosci Nurs"},{"issue":"3","key":"pone.0349034.ref043","doi-asserted-by":"crossref","first-page":"187","DOI":"10.1007\/BF02260859","article-title":"A health-related quality of life measure for multiple sclerosis","volume":"4","author":"BG Vickrey","year":"1995","journal-title":"Qual Life Res"},{"issue":"10","key":"pone.0349034.ref044","doi-asserted-by":"crossref","first-page":"1239","DOI":"10.1177\/1352458509107019","article-title":"The functional index for living with multiple sclerosis: Development and validation of a new quality of life questionnaire","volume":"15","author":"JM Wesson","year":"2009","journal-title":"Mult Scler"},{"issue":"6","key":"pone.0349034.ref045","doi-asserted-by":"crossref","first-page":"511","DOI":"10.1093\/intqhc\/12.6.511","article-title":"Quality of life in multiple sclerosis: Development and validation of the \u201cRAYS\u201d scale and comparison with the SF-36","volume":"12","author":"Z Rotstein","year":"2000","journal-title":"Int J Qual Health Care"},{"issue":"9","key":"pone.0349034.ref046","doi-asserted-by":"crossref","first-page":"1099","DOI":"10.1111\/ene.13339","article-title":"Patient-reported outcomes in multiple sclerosis: A systematic comparison of available measures","volume":"24","author":"V Khurana","year":"2017","journal-title":"Eur J Neurol"},{"issue":"3","key":"pone.0349034.ref047","doi-asserted-by":"crossref","first-page":"295","DOI":"10.1097\/WCO.0000000000000821","article-title":"Measuring outcomes that matter most to people with multiple sclerosis: The role of patient-reported outcomes","volume":"33","author":"G Brichetto","year":"2020","journal-title":"Curr Opin Neurol"},{"issue":"11","key":"pone.0349034.ref048","doi-asserted-by":"crossref","first-page":"1195","DOI":"10.1016\/j.jclinepi.2010.04.012","article-title":"Relative to the general US population, chronic diseases are associated with poorer health-related quality of life as measured by the Patient-Reported Outcomes Measurement Information System (PROMIS)","volume":"63","author":"NE Rothrock","year":"2010","journal-title":"J Clin Epidemiol"},{"key":"pone.0349034.ref049","doi-asserted-by":"crossref","DOI":"10.1097\/01.mlr.0000258615.42478.55","article-title":"The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years","volume":"45","author":"D Cella","year":"2007","journal-title":"Med Care"},{"key":"pone.0349034.ref050","doi-asserted-by":"crossref","first-page":"962","DOI":"10.1093\/brain\/124.5.962","article-title":"The Multiple Sclerosis Impact Scale (MSIS-29): A new patient-based outcome measure","volume":"124","author":"J Hobart","year":"2001","journal-title":"Brain"},{"issue":"2","key":"pone.0349034.ref051","doi-asserted-by":"crossref","first-page":"219","DOI":"10.1177\/1352458507080733","article-title":"Validation of the multiple sclerosis international quality of life questionnaire","volume":"14","author":"M Simeoni","year":"2008","journal-title":"Mult Scler"},{"issue":"1","key":"pone.0349034.ref052","doi-asserted-by":"crossref","first-page":"129","DOI":"10.1212\/WNL.47.1.129","article-title":"Validation of the functional assessment of multiple sclerosis quality of life instrument","volume":"47","author":"DF Cella","year":"1996","journal-title":"Neurology"},{"key":"pone.0349034.ref053","unstructured":"MULTI-ACT Consortium. Guidelines for patient engagement in health research & innovation. https:\/\/www.multiact.eu\/wp-content\/uploads\/2020\/05\/MULTI-ACT-Patient-Engagement-Guidelines-Short.pdf. 2020. Accessed 2025 June 27."},{"key":"pone.0349034.ref054","article-title":"The PRISMA 2020 statement: An updated guideline for reporting systematic reviews","volume":"372","author":"MJ Page","year":"2021","journal-title":"BMJ"},{"issue":"5","key":"pone.0349034.ref055","doi-asserted-by":"crossref","first-page":"1147","DOI":"10.1007\/s11136-018-1798-3","article-title":"COSMIN guideline for systematic reviews of patient-reported outcome measures","volume":"27","author":"CAC Prinsen","year":"2018","journal-title":"Qual Life Res"},{"issue":"11","key":"pone.0349034.ref056","doi-asserted-by":"crossref","first-page":"1444","DOI":"10.1212\/WNL.33.11.1444","article-title":"Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS)","volume":"33","author":"JF Kurtzke","year":"1983","journal-title":"Neurology"},{"issue":"2","key":"pone.0349034.ref057","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1191\/1478088706qp063oa","article-title":"Using thematic analysis in psychology","volume":"3","author":"V Braun","year":"2006","journal-title":"Qual Res Psychol"},{"issue":"6","key":"pone.0349034.ref058","doi-asserted-by":"crossref","first-page":"349","DOI":"10.1093\/intqhc\/mzm042","article-title":"Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups","volume":"19","author":"A Tong","year":"2007","journal-title":"Int J Qual Health Care"},{"issue":"2","key":"pone.0349034.ref059","doi-asserted-by":"crossref","first-page":"119","DOI":"10.1177\/135245850100700208","article-title":"Disease specific quality of life instruments in multiple sclerosis: Validation of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS)","volume":"7","author":"SM Gold","year":"2001","journal-title":"Mult Scler"},{"issue":"9","key":"pone.0349034.ref060","doi-asserted-by":"crossref","first-page":"1092","DOI":"10.1177\/1352458509106513","article-title":"The development of patient-reported outcome indices for multiple sclerosis (PRIMUS)","volume":"15","author":"LC Doward","year":"2009","journal-title":"Mult Scler"},{"issue":"6","key":"pone.0349034.ref061","doi-asserted-by":"crossref","first-page":"935","DOI":"10.1111\/ene.12107","article-title":"A short and validated multiple sclerosis-specific health-related quality of life measurement for routine medical practice","volume":"20","author":"R Devy","year":"2013","journal-title":"Eur J Neurol"},{"issue":"6","key":"pone.0349034.ref062","first-page":"833","article-title":"The clinical implications of neuroimaging in multiple sclerosis: Revisiting the pathophysiology","volume":"31","author":"M Filippi","year":"2018","journal-title":"Curr Opin Neurol"},{"issue":"2","key":"pone.0349034.ref063","first-page":"178","article-title":"Quality of life and depression in multiple sclerosis: The importance of cognitive function","volume":"78","author":"M Korostil","year":"2007","journal-title":"J Neurol Neurosurg Psychiatry"},{"issue":"2","key":"pone.0349034.ref064","first-page":"269","article-title":"Psychosocial aspects of multiple sclerosis: Psychological distress and the role of caregivers","volume":"23","author":"L Stern","year":"2017","journal-title":"Mult Scler"},{"issue":"3","key":"pone.0349034.ref065","first-page":"401","article-title":"Sexual dysfunction in multiple sclerosis: A neglected dimension of patient-reported outcomes","volume":"28","author":"J Lovera","year":"2022","journal-title":"Mult Scler J"},{"issue":"3","key":"pone.0349034.ref066","first-page":"115","article-title":"The multidimensional impact of multiple sclerosis on quality of life: A review of patient and clinician perspectives","volume":"10","author":"A Siegenthaler","year":"2005","journal-title":"J Neurol Disord"},{"issue":"1","key":"pone.0349034.ref067","doi-asserted-by":"crossref","first-page":"14","DOI":"10.1177\/1073191116643164","article-title":"Reliability and validity of ambulatory cognitive assessments","volume":"25","author":"MJ Sliwinski","year":"2018","journal-title":"Assessment"},{"issue":"8","key":"pone.0349034.ref068","first-page":"1070","article-title":"Psychological adjustment to multiple sclerosis: A biopsychosocial perspective","volume":"16","author":"D Miller","year":"2010","journal-title":"Mult Scler"},{"issue":"3","key":"pone.0349034.ref069","first-page":"370","article-title":"Psychological factors associated with functioning in multiple sclerosis: A systematic review","volume":"14","author":"S Barker-Collo","year":"2020","journal-title":"Health Psychol Rev"},{"key":"pone.0349034.ref070","first-page":"110503","article-title":"Illness uncertainty and psychological distress in multiple sclerosis: A longitudinal study","volume":"146","author":"RE Boeschoten","year":"2021","journal-title":"J Psychosom Res"},{"issue":"8","key":"pone.0349034.ref071","first-page":"937","article-title":"Social isolation and quality of life in multiple sclerosis: A qualitative approach","volume":"26","author":"MA de Sousa","year":"2020","journal-title":"Mult Scler"},{"issue":"8","key":"pone.0349034.ref072","doi-asserted-by":"crossref","first-page":"1123","DOI":"10.1177\/1352458517694432","article-title":"New insights into the burden and costs of multiple sclerosis in Europe","volume":"23","author":"MSCOI Study Group","year":"2017","journal-title":"Mult Scler"},{"issue":"9","key":"pone.0349034.ref073","first-page":"1431","article-title":"Employment, job loss and economic burden in people with multiple sclerosis: A prospective cohort study","volume":"29","author":"S Schiavolin","year":"2023","journal-title":"Multiple Sclerosis Journal"},{"issue":"5","key":"pone.0349034.ref074","first-page":"477","article-title":"Economic burden of multiple sclerosis in Europe: The cost of healthcare, lost productivity, and financial strain","volume":"13","author":"P Tugwell","year":"2014","journal-title":"Lancet Neurol"},{"issue":"9","key":"pone.0349034.ref075","first-page":"3423","article-title":"Determinants of quality of life and social participation in multiple sclerosis: A systematic review","volume":"268","author":"A Raggi","year":"2021","journal-title":"J Neurol"},{"issue":"24","key":"pone.0349034.ref076","first-page":"7149","article-title":"Invisible symptoms and social participation in multiple sclerosis: A mixed-methods review","volume":"44","author":"V van Damme","year":"2022","journal-title":"Disabil Rehabil"},{"issue":"6","key":"pone.0349034.ref077","first-page":"1214","article-title":"Implementing multidimensional computerized adaptive testing in chronic neurological disease: Benefits, limitations, and future directions","volume":"103","author":"KD Fischer","year":"2022","journal-title":"Arch Phys Med Rehabil"},{"issue":"1","key":"pone.0349034.ref078","first-page":"41","article-title":"Advances in patient-reported outcomes and computerized adaptive testing in neurological conditions","volume":"29","author":"D Amtmann","year":"2020","journal-title":"Qual Life Res"},{"issue":"1","key":"pone.0349034.ref079","first-page":"1","article-title":"Computerized adaptive testing for patient-reported outcomes","volume":"24","author":"DA Revicki","year":"2015","journal-title":"Quality of Life Research"},{"issue":"4","key":"pone.0349034.ref080","doi-asserted-by":"crossref","DOI":"10.1200\/JOP.2013.001067","article-title":"Review of electronic patient-reported outcomes systems used in cancer clinical care","volume":"10","author":"RE Jensen","year":"2014","journal-title":"J Oncol Pract"},{"issue":"2","key":"pone.0349034.ref081","article-title":"Implementation of patient-reported outcomes in routine oncology care: A National Cancer Institute framework","volume":"23","author":"E Basch","year":"2022","journal-title":"The Lancet Oncology"}],"container-title":["PLOS One"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0349034","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T17:27:34Z","timestamp":1781198854000},"score":1,"resource":{"primary":{"URL":"https:\/\/dx.plos.org\/10.1371\/journal.pone.0349034"}},"subtitle":[],"editor":[{"given":"Amit","family":"Kumar","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"editor"}]}],"short-title":[],"issued":{"date-parts":[[2026,6,11]]},"references-count":81,"journal-issue":{"issue":"6","published-online":{"date-parts":[[2026,6,11]]}},"URL":"https:\/\/doi.org\/10.1371\/journal.pone.0349034","relation":{},"ISSN":["1932-6203"],"issn-type":[{"value":"1932-6203","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,6,11]]}}}