{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,13]],"date-time":"2026-04-13T21:17:51Z","timestamp":1776115071541,"version":"3.50.1"},"reference-count":36,"publisher":"Oxford University Press (OUP)","issue":"12","license":[{"start":{"date-parts":[[2020,10,12]],"date-time":"2020-10-12T00:00:00Z","timestamp":1602460800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/journals\/pages\/open_access\/funder_policies\/chorus\/standard_publication_model"}],"funder":[{"name":"Patient-Centered Outcomes Research (PCOR) Mentored Clinical"},{"name":"Agency of Healthcare Research and Quality","award":["K08HS024299"],"award-info":[{"award-number":["K08HS024299"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2020,12,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>To determine the content priorities and design preferences for a longitudinal care plan (LCP) among caregivers and healthcare providers who care for children with medical complexity (CMC) in acute care settings.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Materials and Methods<\/jats:title>\n                  <jats:p>We conducted iterative one-on-one design sessions with CMC caregivers (ie, parents\/legal guardians) and providers from 5 groups: complex care, primary care, subspecialists, emergency care, and care coordinators. Audio-recorded sessions included content categorization activities, drawing exercises, and scenario-based testing of an electronic LCP prototype. We applied inductive content analysis of session materials to elicit content priorities and design preferences between sessions. Analysis informed iterative prototype revisions.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>We conducted 30 design sessions (10 with caregivers, 20 with providers). Caregivers expressed high within-group variability in their content priorities compared to provider groups. Emergency providers had the most unique content priorities among clinicians. We identified 6 key design preferences: a familiar yet customizable layout, a problem-based organization schema, linked content between sections, a table layout for most sections, a balance between unstructured and structured data fields, and use of family-centered terminology.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Discussion<\/jats:title>\n                  <jats:p>Findings from this study will inform enhancements of electronic health record-embedded LCPs and the development of new LCP tools and applications. The design preferences we identified provide a framework for optimizing integration of family and provider content priorities while maintaining a user-tailored experience.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Health information platforms that incorporate these design preferences into electronic LCPs will help meet the information needs of caregivers and providers caring for CMC in acute care settings.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/jamia\/ocaa193","type":"journal-article","created":{"date-parts":[[2020,8,20]],"date-time":"2020-08-20T03:39:13Z","timestamp":1597894753000},"page":"1860-1870","source":"Crossref","is-referenced-by-count":24,"title":["User-centered design of a longitudinal care plan for children with medical complexity"],"prefix":"10.1093","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7596-8479","authenticated-orcid":false,"given":"Arti D","family":"Desai","sequence":"first","affiliation":[{"name":"Department of Pediatrics, University of Washington, Seattle, Washington, USA"},{"name":"Seattle Children\u2019s Research Institute, Seattle, Washington, USA"}]},{"given":"Grace","family":"Wang","sequence":"additional","affiliation":[{"name":"Seattle Children\u2019s Research Institute, Seattle, Washington, USA"}]},{"given":"Julia","family":"Wignall","sequence":"additional","affiliation":[{"name":"Seattle Children\u2019s Research Institute, Seattle, Washington, USA"}]},{"given":"Dylan","family":"Kinard","sequence":"additional","affiliation":[{"name":"Seattle Children\u2019s Research Institute, Seattle, Washington, USA"}]},{"given":"Vidhi","family":"Singh","sequence":"additional","affiliation":[{"name":"Seattle Children\u2019s Research Institute, Seattle, Washington, USA"}]},{"given":"Sherri","family":"Adams","sequence":"additional","affiliation":[{"name":"Division of Paediatric Medicine, SickKids, Toronto, Canada"},{"name":"SickKids Research Institute, Toronto, Canada"},{"name":"Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada"}]},{"given":"Wanda","family":"Pratt","sequence":"additional","affiliation":[{"name":"The Information School, University of Washington, Seattle, Washington, USA"},{"name":"Biomedical and Health Informatics, University of Washington, Seattle, Washington, USA"}]}],"member":"286","published-online":{"date-parts":[[2020,10,12]]},"reference":[{"issue":"10","key":"2020121009243985400_ocaa193-B1","doi-asserted-by":"crossref","first-page":"1064","DOI":"10.1056\/NEJMhpr0706165","article-title":"Coordinating care-a perilous journey through the health care system","volume":"358","author":"Bodenheimer","year":"2008","journal-title":"N Engl J Med"},{"issue":"6","key":"2020121009243985400_ocaa193-B2","doi-asserted-by":"crossref","first-page":"e1463","DOI":"10.1542\/peds.2012-0175","article-title":"Patterns and costs of health care use of children with medical 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