{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T19:14:32Z","timestamp":1777490072528,"version":"3.51.4"},"reference-count":37,"publisher":"Springer Science and Business Media LLC","issue":"3","license":[{"start":{"date-parts":[[2026,2,6]],"date-time":"2026-02-06T00:00:00Z","timestamp":1770336000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"},{"start":{"date-parts":[[2026,2,6]],"date-time":"2026-02-06T00:00:00Z","timestamp":1770336000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0"}],"funder":[{"name":"National Health Council"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Patient"],"published-print":{"date-parts":[[2026,5]]},"DOI":"10.1007\/s40271-025-00799-7","type":"journal-article","created":{"date-parts":[[2026,2,6]],"date-time":"2026-02-06T18:38:21Z","timestamp":1770403101000},"page":"465-480","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["What Is Important to Patients? A Mixed Methods Study to Understand Patient Experience Commonalities Across Three Conditions"],"prefix":"10.1007","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0009-0000-4865-2049","authenticated-orcid":false,"given":"Kayleigh R.","family":"Majercak","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eleanor M.","family":"Perfetto","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4322-2490","authenticated-orcid":false,"given":"C. Daniel","family":"Mullins","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2026,2,6]]},"reference":[{"key":"799_CR1","unstructured":"US Food and Drug Administration Roadmap to patient-focused outcome measurement. https:\/\/www.fda.gov\/drugs\/clinical-outcome-assessment-coa-qualification-program\/clinical-outcome-assessment-coa-qualification-program-frequently-asked-questions. Accessed 2 Nov 2021."},{"key":"799_CR2","unstructured":"US Food and Drug Administration Collecting patient experience data: how you can best help FDA?"},{"key":"799_CR3","unstructured":"Eastern Research Group Inc. Assessment of the use of patient experience data in regulatory decision-making. 2021. https:\/\/www.fda.gov\/media\/150405\/download. Accessed 25 Jan 2022."},{"key":"799_CR4","unstructured":"US Food and Drug Administration. Patient-focused drug development: selecting, developing, or modifying fit-for-purpose clinical outcome assessments. 2025. https:\/\/www.fda.gov\/regulatory-information\/search-fda-guidance-documents\/patient-focused-drug-development-selecting-developing-or-modifying-fit-purpose-clinical-outcome. Accessed 1 Nov 2025."},{"key":"799_CR5","unstructured":"National Health Council PC-CIS impact taxonomy. https:\/\/nationalhealthcouncil.org\/pc-cis-impact-taxonomy\/. Accessed 28 Jan 2023."},{"key":"799_CR6","unstructured":"Innovation and Value Initiative. IVI methods summit: defining needs and progress toward improving methods in value assessment. 2020."},{"key":"799_CR7","doi-asserted-by":"publisher","first-page":"381","DOI":"10.1007\/s40271-020-00446-3","volume":"14","author":"MT Linthicum","year":"2021","unstructured":"Linthicum MT, dosReis S, Slejko JF, et al. The importance of collaboration in pursuit of patient-centered value assessment. Patient. 2021;14:381\u20134. https:\/\/doi.org\/10.1007\/s40271-020-00446-3.","journal-title":"Patient"},{"key":"799_CR8","unstructured":"International Society for Pharmacoeconomics and Outcomes Research. Science strategy. 2021. https:\/\/www.ispor.org\/strategic-initiatives\/science-strategy. Accessed 20 Jan 2022."},{"key":"799_CR9","unstructured":"Mattingly TJ, Slejko JF, Oehrlein EM, Perfetto EM. Nudging health economists: a process for systematic identification of patient-centered outcomes for inclusion in value assessment. Value Outcomes Spotlight. 2021;7."},{"key":"799_CR10","unstructured":"US Food and Drug Administration. FDA-led Patient-Focused Drug Development (PFDD) public meetings. 2020. https:\/\/www.fda.gov\/industry\/prescription-drug-user-fee-amendments\/fda-led-patient-focused-drug-development-pfdd-public-meetings. Accessed 7 Aug 2020."},{"key":"799_CR11","unstructured":"National Health Council A blueprint for developing Patient-Centered Core Impact Sets (PC-CIS). https:\/\/nationalhealthcouncil.org\/a-blueprint-for-developing-patient-centered-core-impact-sets-pc-cis\/. Accessed 26 Jan 2023."},{"key":"799_CR12","doi-asserted-by":"publisher","DOI":"10.24926\/iip.v14i1.5264","volume":"14","author":"EM Perfetto","year":"2023","unstructured":"Perfetto EM, Schrandt S, Escontr\u00edas OA, Burke LB. Patient-centered core impacts sets (PC-CIS): what they are and what they are not. Innov Pharm. 2023;14:3. https:\/\/doi.org\/10.24926\/iip.v14i1.5264.","journal-title":"Innov Pharm"},{"key":"799_CR13","doi-asserted-by":"publisher","first-page":"848","DOI":"10.1007\/s43441-022-00432-x","volume":"56","author":"K Schroeder","year":"2022","unstructured":"Schroeder K, Bertelsen N, Scott J, et al. Building from patient experiences to deliver patient-focused healthcare systems in collaboration with patients: a call to action. Ther Innov Regul Sci. 2022;56:848\u201358. https:\/\/doi.org\/10.1007\/s43441-022-00432-x.","journal-title":"Ther Innov Regul Sci"},{"key":"799_CR14","unstructured":"United States Food and Drug Administration CDER Patient-Focused Drug Development. https:\/\/www.fda.gov\/drugs\/development-approval-process-drugs\/cder-patient-focused-drug-development. Accessed 1 Nov 2025."},{"key":"799_CR15","first-page":"58848","volume":"77","author":"Food and Drug Administration","year":"2012","unstructured":"Food and Drug Administration. Prescription drug user fee act V patient-focused drug development; consultation meetings; request for notification of patient stakeholder intention to participate. Fed Regist. 2012;77:58848\u20139.","journal-title":"Fed Regist"},{"key":"799_CR16","unstructured":"Tuberous Sclerosis Alliance. The voice of the patient: a report from the Tuberous Sclerosis Alliance\u2019s externally-led Patient-Focused Drug Development meeting. 2017."},{"key":"799_CR17","unstructured":"US Department of Health and Human Services FDA Center for Drug Evaluation and Research, US Department of Health and Human Services FDA Center for Biologics Evaluation and Research, US Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims | FDA. 2009. https:\/\/www.fda.gov\/regulatory-information\/search-fda-guidance-documents\/patient-reported-outcome-measures-use-medical-product-development-support-labeling-claims. Accessed 16 Mar 2020."},{"key":"799_CR18","doi-asserted-by":"publisher","first-page":"589","DOI":"10.1007\/s40273-021-01009-6","volume":"39","author":"E Keeney","year":"2021","unstructured":"Keeney E, Thom H, Turner E, et al. Using a modified Delphi approach to gain consensus on relevant comparators in a cost-effectiveness model: application to prostate cancer screening. Pharmacoeconomics. 2021;39:589\u2013600. https:\/\/doi.org\/10.1007\/s40273-021-01009-6.","journal-title":"Pharmacoeconomics"},{"key":"799_CR19","doi-asserted-by":"publisher","first-page":"1895","DOI":"10.1002\/acr.22372","volume":"66","author":"N Leuchten","year":"2014","unstructured":"Leuchten N, Bauernfeind B, Kuttner J, et al. Relevant concepts of functioning for patients with systemic lupus erythematosus identified in a Delphi exercise of experts and a literature review. Arthritis Care Res (Hoboken). 2014;66:1895\u2013904. https:\/\/doi.org\/10.1002\/acr.22372.","journal-title":"Arthritis Care Res (Hoboken)"},{"key":"799_CR20","unstructured":"National Health Council Patient Experience Mapping Toolbox. https:\/\/nationalhealthcouncil.org\/additional-resources\/patient-experience-map\/. Accessed 29 Sep 2023."},{"key":"799_CR21","doi-asserted-by":"publisher","first-page":"10","DOI":"10.1016\/j.jval.2022.10.002","volume":"26","author":"EM Oehrlein","year":"2023","unstructured":"Oehrlein EM, Burcu M, Schoch S, Gressler LE. Enhancing patient centricity of real-world data research: an exploratory analysis using the patient experience mapping toolbox. Value Health. 2023;26:10\u20137. https:\/\/doi.org\/10.1016\/j.jval.2022.10.002.","journal-title":"Value Health"},{"key":"799_CR22","unstructured":"National Health Council Patient Experience Mapping Toolbox \u201cMap My Experience\u201d Visual. https:\/\/nationalhealthcouncil.org\/resources\/pemt-map-my-experience-visual-terms-of-service\/. Accessed 29 Sep 2023."},{"key":"799_CR23","doi-asserted-by":"publisher","first-page":"77","DOI":"10.1191\/1478088706qp063oa","volume":"3","author":"V Braun","year":"2006","unstructured":"Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77\u2013101. https:\/\/doi.org\/10.1191\/1478088706qp063oa.","journal-title":"Qual Res Psychol"},{"key":"799_CR24","doi-asserted-by":"publisher","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","volume":"11","author":"V Braun","year":"2019","unstructured":"Braun V, Clarke V. Reflecting on reflexive thematic analysis. Qual Res Sport Exerc Heal. 2019;11:589\u201397. https:\/\/doi.org\/10.1080\/2159676X.2019.1628806.","journal-title":"Qual Res Sport Exerc Heal"},{"key":"799_CR25","unstructured":"ATLAS.ti Scientific Software Development GmbH. ATLAS.ti 9 User Manual. 2021."},{"key":"799_CR26","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1007\/s40271-023-00648-5","volume":"17","author":"C Mease","year":"2024","unstructured":"Mease C, Fermaglich LJ, Jackler K, et al. Determining commonalities in the experiences of patients with rare diseases: a qualitative analysis of US Food and Drug Administration patient engagement sessions. Patient. 2024;17:25\u201337. https:\/\/doi.org\/10.1007\/s40271-023-00648-5.","journal-title":"Patient"},{"key":"799_CR27","doi-asserted-by":"publisher","DOI":"10.1186\/s41687-022-00506-2","volume":"6","author":"M Tabberer","year":"2022","unstructured":"Tabberer M, Wells JR, Chandler D, et al. Patient experience of moderate asthma attacks: qualitative research in the USA and Germany. J Patient Rep Outcomes. 2022;6:117. https:\/\/doi.org\/10.1186\/s41687-022-00506-2.","journal-title":"J Patient Rep Outcomes"},{"key":"799_CR28","doi-asserted-by":"publisher","first-page":"453","DOI":"10.1016\/j.jval.2018.11.007","volume":"22","author":"S Hudgens","year":"2019","unstructured":"Hudgens S, Sch\u00fcler R, Stokes J, et al. Development and validation of the FSIQ-RMS: a new patient-reported questionnaire to assess symptoms and impacts of fatigue in relapsing multiple sclerosis. Value Health. 2019;22:453\u201366. https:\/\/doi.org\/10.1016\/j.jval.2018.11.007.","journal-title":"Value Health"},{"key":"799_CR29","unstructured":"International Consortium for Health Outcomes Measurement Colorectal cancer standard set. https:\/\/www.ichom.org\/patient-centered-outcome-measure\/colorectal-cancer\/. Accessed 23 Feb 2024."},{"key":"799_CR30","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/dju244","author":"E Basch","year":"2014","unstructured":"Basch E, Reeve BB, Mitchell SA, et al. Development of the National Cancer Institute\u2019s patient-reported outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE). J Natl Cancer Inst. 2014. https:\/\/doi.org\/10.1093\/jnci\/dju244.","journal-title":"J Natl Cancer Inst"},{"key":"799_CR31","doi-asserted-by":"publisher","first-page":"226","DOI":"10.1016\/j.jamda.2010.09.010","volume":"12","author":"CJ Evans","year":"2011","unstructured":"Evans CJ, Chiou C-F, Fitzgerald KA, et al. Development of a new patient-reported outcome measure in sarcopenia. J Am Med Dir Assoc. 2011;12:226\u201333. https:\/\/doi.org\/10.1016\/j.jamda.2010.09.010.","journal-title":"J Am Med Dir Assoc"},{"key":"799_CR32","doi-asserted-by":"publisher","first-page":"25","DOI":"10.1007\/s11136-005-0376-7","volume":"15","author":"EE Michalak","year":"2006","unstructured":"Michalak EE, Yatham LN, Kolesar S, Lam RW. Bipolar disorder and quality of life: a patient-centered perspective. Qual Life Res. 2006;15:25\u201337. https:\/\/doi.org\/10.1007\/s11136-005-0376-7.","journal-title":"Qual Life Res"},{"key":"799_CR33","doi-asserted-by":"publisher","first-page":"575","DOI":"10.1016\/j.jad.2021.12.032","volume":"299","author":"E Morton","year":"2022","unstructured":"Morton E, Foxworth P, Dardess P, et al. Supporting wellness\u201d: a depression and bipolar support alliance mixed-methods investigation of lived experience perspectives and priorities for mood disorder treatment. J Affect Disord. 2022;299:575\u201384. https:\/\/doi.org\/10.1016\/j.jad.2021.12.032.","journal-title":"J Affect Disord"},{"key":"799_CR34","unstructured":"Morel T. How PROs can change classical clinical trials and end-points; how relevant regulations and patient involvement can influence PROs. In: 9th Symposium of the Swiss Clinical Trial Organisation. 2019."},{"key":"799_CR35","doi-asserted-by":"publisher","first-page":"1590","DOI":"10.3389\/fnins.2021.718416","volume":"15","author":"A Laplante-L\u00e9vesque","year":"2021","unstructured":"Laplante-L\u00e9vesque A, Dubno JR, Mosnier I, et al. Best practices in the development, translation, and cultural adaptation of patient-reported outcome measures for adults with hearing impairment: lessons from the Cochlear Implant Quality of Life Instruments. Front Neurosci. 2021;15:1590. https:\/\/doi.org\/10.3389\/fnins.2021.718416.","journal-title":"Front Neurosci"},{"key":"799_CR36","doi-asserted-by":"publisher","first-page":"3122","DOI":"10.1016\/j.arthro.2021.05.036","volume":"37","author":"R Martin","year":"2021","unstructured":"Martin R, Disantis A. Editorial commentary: patient-reported outcome measures with established clinically important outcome values should be used for hip arthroscopy patients: sifting through the white noise. Arthroscopy. 2021;37:3122\u20134. https:\/\/doi.org\/10.1016\/j.arthro.2021.05.036.","journal-title":"Arthroscopy"},{"key":"799_CR37","doi-asserted-by":"publisher","first-page":"652","DOI":"10.18553\/jmcp.2020.26.5.652","volume":"26","author":"T Karmarkar","year":"2020","unstructured":"Karmarkar T, Graff JS, Westrich K. Underestimating the value of an intervention: the case for including productivity in value assessments and formulary design. J Manag Care Spec Pharm. 2020;26:652\u201361. https:\/\/doi.org\/10.18553\/jmcp.2020.26.5.652.","journal-title":"J Manag Care Spec Pharm"}],"container-title":["The Patient - Patient-Centered Outcomes Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s40271-025-00799-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s40271-025-00799-7","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s40271-025-00799-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T14:46:07Z","timestamp":1777387567000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s40271-025-00799-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,2,6]]},"references-count":37,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2026,5]]}},"alternative-id":["799"],"URL":"https:\/\/doi.org\/10.1007\/s40271-025-00799-7","relation":{},"ISSN":["1178-1653","1178-1661"],"issn-type":[{"value":"1178-1653","type":"print"},{"value":"1178-1661","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,2,6]]},"assertion":[{"value":"20 April 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 December 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"6 February 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare that they have no conflicts of interest.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"This study (HP-00103041) was approved by the University of Maryland Baltimore Institutional Review Board.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"The data for the research presented in the publication may be available from the corresponding author, on reasonable request.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Data availability statement"}},{"value":"All authors contributed to the research design. Material preparation, data collection, data extraction, and analysis were performed by KM. The first draft of the manuscript was written by KM, and all authors commented on previous versions. All authors read and approved the final manuscript.","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Author contributions"}}]}}