{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,6]],"date-time":"2026-11-06T06:41:20Z","timestamp":1793947280062,"version":"4.8.0"},"reference-count":94,"publisher":"SAGE Publications","issue":"13","license":[{"start":{"date-parts":[[2025,6,29]],"date-time":"2025-06-29T00:00:00Z","timestamp":1751155200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2025,6,29]],"date-time":"2025-06-29T00:00:00Z","timestamp":1751155200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100020956","name":"Merck Healthcare KGaA","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100020956","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Mult Scler"],"published-print":{"date-parts":[[2025,11]]},"abstract":"<jats:p>Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system. Common symptoms include physical disability, cognitive impairment, spasticity, fatigue, bowel\/bladder dysfunction and depression. The use of patient-reported outcomes (PROs) can be used to systematically assess the burden of the disease and its impact on treatment and health-related quality of life. Assessment of PROs in routine care of people with MS provides a unique and personal insight into the multifaceted impact of the disease, while avoiding perpetuating the paternalistic medical approach that privileges objective medical measurement.<\/jats:p>\n                  <jats:p>This review highlights the potential benefits of integrating PROs in MS routine care from the patient and clinician perspective, describes challenges associated with PRO data collection and their use in routine settings. Challenges in the integration of PROs into routine care include (1) selection of PRO measures, (2) provider and technical workflow and (3) equity, diversity and inclusivity challenges. In addition, the review provides solutions and recommendations to facilitate the integration of PROs in MS care. The adoption of PROs in MS routine care is essential to improve MS individuals\u2019 quality of care and deliver patient-centred care, which can lead to increased treatment adherence and patient outcomes.<\/jats:p>","DOI":"10.1177\/13524585251349354","type":"journal-article","created":{"date-parts":[[2025,6,30]],"date-time":"2025-06-30T02:19:32Z","timestamp":1751249972000},"page":"1518-1530","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":11,"title":["The importance of patient-reported outcomes: A call for their integration in the routine care of patients with multiple sclerosis"],"prefix":"10.1177","volume":"31","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1566-6804","authenticated-orcid":false,"given":"Samantha","family":"Cruz Rivera","sequence":"first","affiliation":[{"name":"Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"},{"name":"Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stephanie","family":"Buxhoeveden","sequence":"additional","affiliation":[{"name":"Virginia Commonwealth University, Richmond, VA, USA"},{"name":"Member Board of Trustees, National Multiple Sclerosis Society, NY, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olalekan Lee","family":"Aiyegbusi","sequence":"additional","affiliation":[{"name":"Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"},{"name":"Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK"},{"name":"National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK"},{"name":"NIHR Applied Research Collaboration (ARC) West Midlands, University of Birmingham, Birmingham, UK"},{"name":"NIHR Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics, University of Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7886-9756","authenticated-orcid":false,"given":"Nina","family":"Bozinov","sequence":"additional","affiliation":[{"name":"Kootenai Clinic Neurology, Kootenai Health, University of Washington\/WWAMI Idaho, Coeur d\u2019Alene, ID, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paul","family":"Kamudoni","sequence":"additional","affiliation":[{"name":"Merck Healthcare KGaA, Darmstadt, Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"McBurney","sequence":"additional","affiliation":[{"name":"Optimal Healthcare Outcomes, Mashpee, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melanie","family":"Calvert","sequence":"additional","affiliation":[{"name":"Centre for Patient Reported Outcomes Research, Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK"},{"name":"Birmingham Health Partners Centre for Regulatory Science and Innovation, University of Birmingham, Birmingham, UK"},{"name":"National Institute for Health and Care Research (NIHR) Birmingham Biomedical Research Centre, University of Birmingham, Birmingham, UK"},{"name":"NIHR Applied Research Collaboration (ARC) West Midlands, University of Birmingham, Birmingham, UK"},{"name":"NIHR Blood and Transplant Research Unit (BTRU) in Precision Transplant and Cellular Therapeutics, University of Birmingham, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,6,29]]},"reference":[{"key":"e_1_3_3_2_2","doi-asserted-by":"publisher","DOI":"10.1177\/1352458520970841"},{"issue":"1","key":"e_1_3_3_3_2","first-page":"1","article-title":"Multiple sclerosis: Pathogenesis, symptoms, diagnoses and cell-based therapy","volume":"19","author":"Ghasemi N","year":"2017","unstructured":"Ghasemi N, Razavi S, Nikzad E. Multiple sclerosis: Pathogenesis, symptoms, diagnoses and cell-based therapy. Cell J 2017; 19(1): 1\u201310.","journal-title":"Cell J"},{"key":"e_1_3_3_4_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(08)61620-7"},{"key":"e_1_3_3_5_2","unstructured":"FDA. Patient-reported outcome measures: Use in medical product development to support labeling claims 2009 https:\/\/www.fda.gov\/regulatory-information\/search-fda-guidance-documents\/patient-reported-outcome-measures-use-medical-product-development-support-labeling-claims"},{"key":"e_1_3_3_6_2","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-8-104"},{"key":"e_1_3_3_7_2","doi-asserted-by":"publisher","DOI":"10.1200\/EDBK_200383"},{"key":"e_1_3_3_8_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2022.01.008"},{"key":"e_1_3_3_9_2","doi-asserted-by":"publisher","DOI":"10.3390\/jpm11080791"},{"key":"e_1_3_3_10_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.msard.2021.103475"},{"key":"e_1_3_3_11_2","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2017.171"},{"key":"e_1_3_3_12_2","article-title":"Maximising the impact of patient reported outcome assessment for patients and society","volume":"364","author":"Calvert M","year":"2019","unstructured":"Calvert M, Kyte D, Price G, et al. Maximising the impact of patient reported outcome assessment for patients and society. BMJ 2019; 364: k5267.","journal-title":"BMJ"},{"key":"e_1_3_3_13_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41467-022-33826-4"},{"key":"e_1_3_3_14_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.msard.2019.05.019"},{"key":"e_1_3_3_15_2","unstructured":"NHS. Finalised patient reported outcome measures (PROMs) in England for hip and knee replacement procedures 2023 (April 2021 to March 2022) <https:\/\/digital.nhs.uk\/data-and-information\/publications\/statistical\/patient-reported-outcome-measures-proms\/finalised-hip-and-knee-replacement-procedures-april-2021-to-march-2022>"},{"key":"e_1_3_3_16_2","unstructured":"FDA. Framework for FDA\u2019s real-world evidence program 2018 <https:\/\/www.fda.gov\/science-research\/science-and-research-special-topics\/real-world-evidence>"},{"key":"e_1_3_3_17_2","doi-asserted-by":"crossref","unstructured":"Maruszczyk K Aiyegbusi OL Cardoso VR et al. Implementation of patient-reported outcome measures in real-world evidence studies: Analysis of ClinicalTrials.gov records (1999\u20132021). Contemp Clin Trials 2022; 120: 106882.","DOI":"10.1016\/j.cct.2022.106882"},{"key":"e_1_3_3_18_2","doi-asserted-by":"publisher","DOI":"10.1177\/1352458519892555"},{"key":"e_1_3_3_19_2","unstructured":"MS and data alliance <https:\/\/msdataalliance.com\/>"},{"key":"e_1_3_3_20_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj-2022-070230"},{"key":"e_1_3_3_21_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-015-0992-9"},{"key":"e_1_3_3_22_2","doi-asserted-by":"publisher","DOI":"10.1158\/1078-0432.CCR-15-2035"},{"key":"e_1_3_3_23_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.f167"},{"key":"e_1_3_3_24_2","doi-asserted-by":"publisher","DOI":"10.1097\/00005650-198903001-00018"},{"key":"e_1_3_3_25_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.msard.2023.105065"},{"key":"e_1_3_3_26_2","doi-asserted-by":"publisher","DOI":"10.1111\/ene.13339"},{"key":"e_1_3_3_27_2","unstructured":"National Multiple Sclerosis. Medications 2024 <https:\/\/www.nationalmssociety.org\/Treating-MS\/Medications#section-4>"},{"key":"e_1_3_3_28_2","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2023.1286122"},{"key":"e_1_3_3_29_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.urology.2007.11.100"},{"key":"e_1_3_3_30_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-9958-8"},{"key":"e_1_3_3_31_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.47.1.129"},{"key":"e_1_3_3_32_2","doi-asserted-by":"publisher","DOI":"10.1177\/135245850100700208"},{"key":"e_1_3_3_33_2","doi-asserted-by":"publisher","DOI":"10.1177\/13524585241290102"},{"key":"e_1_3_3_34_2","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.73.6.701"},{"key":"e_1_3_3_35_2","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.55.9.1341"},{"key":"e_1_3_3_36_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11940-016-0411-8"},{"key":"e_1_3_3_37_2","volume-title":"Beck depression inventory","author":"Beck AT","year":"1987","unstructured":"Beck AT, Steer RA, Brown GK. Beck depression inventory. San Antonio, TX: Psychological Corporation, 1987."},{"key":"e_1_3_3_38_2","doi-asserted-by":"publisher","DOI":"10.1111\/j.1600-0447.1983.tb09716.x"},{"key":"e_1_3_3_39_2","doi-asserted-by":"publisher","DOI":"10.1177\/014662167700100306"},{"key":"e_1_3_3_40_2","doi-asserted-by":"publisher","DOI":"10.1111\/ane.12648"},{"key":"e_1_3_3_41_2","doi-asserted-by":"publisher","DOI":"10.1177\/135245859900500410"},{"key":"e_1_3_3_42_2","doi-asserted-by":"publisher","DOI":"10.1093\/clinids\/18.Supplement_1.S79"},{"key":"e_1_3_3_43_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-0009-2"},{"key":"e_1_3_3_44_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2018.11.007"},{"key":"e_1_3_3_45_2","doi-asserted-by":"publisher","DOI":"10.1177\/1352458509348519"},{"key":"e_1_3_3_46_2","doi-asserted-by":"publisher","DOI":"10.1038\/ncpuro1298"},{"key":"e_1_3_3_47_2","doi-asserted-by":"publisher","DOI":"10.1023\/A:1005421627154"},{"key":"e_1_3_3_48_2","doi-asserted-by":"publisher","DOI":"10.1080\/00926230590475206"},{"key":"e_1_3_3_49_2","doi-asserted-by":"publisher","DOI":"10.1080\/00926230290001448"},{"key":"e_1_3_3_50_2","doi-asserted-by":"publisher","DOI":"10.1007\/s40120-021-00239-2"},{"key":"e_1_3_3_51_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2018.01.015"},{"key":"e_1_3_3_52_2","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2020.1741698"},{"key":"e_1_3_3_53_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-020-01344-w"},{"key":"e_1_3_3_54_2","doi-asserted-by":"publisher","DOI":"10.1081\/COPD-200053374"},{"key":"e_1_3_3_55_2","doi-asserted-by":"publisher","DOI":"10.4103\/aian.aian_207_23"},{"key":"e_1_3_3_56_2","doi-asserted-by":"publisher","DOI":"10.1002\/cncr.22799"},{"key":"e_1_3_3_57_2","doi-asserted-by":"publisher","DOI":"10.1186\/s41687-024-00711-1"},{"key":"e_1_3_3_58_2","doi-asserted-by":"publisher","DOI":"10.1186\/s13063-021-05255-z"},{"key":"e_1_3_3_59_2","volume-title":"The importance of cultural competence in pain and palliative care","author":"Givler A","year":"2018","unstructured":"Givler A, Bhatt H, Maani -Fogelman PA. The importance of cultural competence in pain and palliative care. Treasure Island, FL: StatPearls Publishing, 2018."},{"key":"e_1_3_3_60_2","unstructured":"COSMIN Initiative <https:\/\/www.cosmin.nl\/>"},{"key":"e_1_3_3_61_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.013"},{"key":"e_1_3_3_62_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-011-0004-7"},{"key":"e_1_3_3_63_2","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(99)00045-3"},{"key":"e_1_3_3_64_2","doi-asserted-by":"publisher","DOI":"10.1586\/14737167.8.5.479"},{"key":"e_1_3_3_65_2","doi-asserted-by":"publisher","DOI":"10.1007\/s00167-013-2654-1"},{"key":"e_1_3_3_66_2","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.26135"},{"key":"e_1_3_3_67_2","doi-asserted-by":"publisher","DOI":"10.1377\/hlthaff.2015.1362"},{"key":"e_1_3_3_68_2","doi-asserted-by":"publisher","DOI":"10.1002\/pon.3087"},{"key":"e_1_3_3_69_2","doi-asserted-by":"publisher","DOI":"10.1002\/jmrs.421"},{"key":"e_1_3_3_70_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jclinepi.2013.04.005"},{"key":"e_1_3_3_71_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamasurg.2013.5285"},{"key":"e_1_3_3_72_2","doi-asserted-by":"publisher","DOI":"10.2196\/15588"},{"key":"e_1_3_3_73_2","doi-asserted-by":"publisher","DOI":"10.1038\/s41591-022-01781-8"},{"key":"e_1_3_3_74_2","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-12-431"},{"key":"e_1_3_3_75_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.apmr.2017.03.011"},{"key":"e_1_3_3_76_2","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.13617"},{"key":"e_1_3_3_77_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.socscimed.2004.06.022"},{"key":"e_1_3_3_78_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2011.06.003"},{"key":"e_1_3_3_79_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.lanepe.2022.100542"},{"key":"e_1_3_3_80_2","doi-asserted-by":"publisher","DOI":"10.3389\/fneur.2017.00229"},{"key":"e_1_3_3_81_2","doi-asserted-by":"publisher","DOI":"10.1001\/jamaneurol.2023.1135"},{"key":"e_1_3_3_82_2","doi-asserted-by":"publisher","DOI":"10.1002\/ana.25688"},{"key":"e_1_3_3_83_2","unstructured":"The PROTEUS guide to implementing patient-reported outcomes in clinical practice a and synthesis of resources <https:\/\/theproteusconsortium.org\/proteus-practice\/>"},{"key":"e_1_3_3_84_2","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2015-010938"},{"key":"e_1_3_3_85_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.conctc.2017.11.009"},{"key":"e_1_3_3_86_2","doi-asserted-by":"publisher","DOI":"10.1177\/20406223211015958"},{"key":"e_1_3_3_87_2","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/djz038"},{"key":"e_1_3_3_88_2","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0110229"},{"key":"e_1_3_3_89_2","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-016-1339-x"},{"key":"e_1_3_3_90_2","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2022.6421"},{"key":"e_1_3_3_91_2","unstructured":"FDA. Patient-focused drug development guidance series for enhancing the incorporation of the patient\u2019s voice in medical product development and regulatory decision making 2018 <https:\/\/www.fda.gov\/Drugs\/DevelopmentApprovalProcess\/ucm610279.htm>"},{"key":"e_1_3_3_92_2","doi-asserted-by":"publisher","DOI":"10.1037\/bul0000473"},{"key":"e_1_3_3_93_2","doi-asserted-by":"publisher","DOI":"10.1097\/MNH.0000000000000357"},{"key":"e_1_3_3_94_2","doi-asserted-by":"publisher","DOI":"10.1093\/eurheartj\/ehu205"},{"key":"e_1_3_3_95_2","doi-asserted-by":"publisher","DOI":"10.1186\/s12955-023-02152-8"}],"container-title":["Multiple Sclerosis Journal"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/13524585251349354","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/13524585251349354","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/13524585251349354","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,5,2]],"date-time":"2026-05-02T04:18:49Z","timestamp":1777695529000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/13524585251349354"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,6,29]]},"references-count":94,"journal-issue":{"issue":"13","published-print":{"date-parts":[[2025,11]]}},"alternative-id":["10.1177\/13524585251349354"],"URL":"https:\/\/doi.org\/10.1177\/13524585251349354","relation":{},"ISSN":["1352-4585","1477-0970"],"issn-type":[{"value":"1352-4585","type":"print"},{"value":"1477-0970","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,6,29]]}}}