{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,9]],"date-time":"2026-10-09T19:38:14Z","timestamp":1791574694699,"version":"4.3.4"},"reference-count":39,"publisher":"American Academy of Pediatrics (AAP)","issue":"6","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2024,6,1]]},"abstract":"<jats:sec>\n                  <jats:title>OBJECTIVES<\/jats:title>\n                  <jats:p>To identify the most important attributes related to the process of achieving, and outcomes associated with, successful care for differences of sex development (DSD).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>METHODS<\/jats:title>\n                  <jats:p>We developed a best\u2013worst scaling survey administered to 520 DSD stakeholders, including individuals or family members of those with DSD, health care specialists, and patient support and advocacy representatives. Fourteen process-related attributes and 16 outcome-related attributes were identified through qualitative research. We estimated relative importance scores and coefficients from regression analysis to understand the relative importance of attributes and conducted latent class analysis to explore heterogeneity in preferences.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>RESULTS<\/jats:title>\n                  <jats:p>The 3 most important process attributes were (1) good communication between care team and patient\/family, (2) care team educated patient\/family about condition, and (3) care team incorporates the values of patient\/family. The 3 most important outcome attributes were (1) patient satisfaction, (2) patient mental health, and (3) treatment maintains physical health. Latent class analyses showed that respondents had heterogeneous preferences. For process-related attributes, we identified 3 respondent groups: \u201cPatient autonomy and support\u201d (46% of respondents), \u201cEducation and care transitions\u201d (18%), and \u201cShared decision-making\u201d (36%). For outcome-related attributes, we identified 2 respondent groups: \u201cPreserving function and appearance\u201d (59% of respondents) and \u201cPatient health and satisfaction\u201d (41%).<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>CONCLUSIONS<\/jats:title>\n                  <jats:p>Outcomes such as patient satisfaction and health were the most important outcome attributes, and good communication and education from the care team were the most important process attributes. Respondents expressed heterogeneous preferences for selected DSD care attributes that providers should consider to improve satisfaction with and quality of DSD care.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1542\/peds.2023-064207","type":"journal-article","created":{"date-parts":[[2024,5,3]],"date-time":"2024-05-03T08:06:39Z","timestamp":1714723599000},"source":"Crossref","is-referenced-by-count":7,"title":["Preferences in Clinical Care of Individuals With Differences of Sex Development"],"prefix":"10.1542","volume":"153","author":[{"given":"Anton L.V.","family":"Avance\u00f1a","sequence":"first","affiliation":[{"name":"aHealth Outcomes Division, College of Pharmacy"},{"name":"bDepartment of Internal Medicine, Dell Medical School, University of Texas at Austin, Texas"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela M.","family":"Rose","sequence":"additional","affiliation":[{"name":"cSusan B. Meister Child Health Evaluation and Research Center (CHEAR), Michigan Medicine"},{"name":"dDepartment of Pediatrics, Michigan Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Melissa D.","family":"Gardner","sequence":"additional","affiliation":[{"name":"cSusan B. Meister Child Health Evaluation and Research Center (CHEAR), Michigan Medicine"},{"name":"dDepartment of Pediatrics, Michigan Medicine"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Meilan M.","family":"Rutter","sequence":"additional","affiliation":[{"name":"eDivision of Endocrinology, Cincinnati Children\u2019s Hospital Medical Center, Cincinnati, Ohio"},{"name":"fDepartment of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tara","family":"Schafer-Kalkhoff","sequence":"additional","affiliation":[{"name":"eDivision of Endocrinology, Cincinnati Children\u2019s Hospital Medical Center, Cincinnati, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kristina I.","family":"Suorsa-Johnson","sequence":"additional","affiliation":[{"name":"gDivision of Pediatric Psychiatry and Behavioral Health, Department of Pediatrics, University of Utah Spencer Fox Eccles School of Medicine, Salt Lake City, Utah"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen D.","family":"van Leeuwen","sequence":"additional","affiliation":[{"name":"hDivision of Pediatric Surgery, Phoenix Children\u2019s Hospital, Phoenix, Arizona"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erica M.","family":"Weidler","sequence":"additional","affiliation":[{"name":"hDivision of Pediatric Surgery, Phoenix Children\u2019s Hospital, Phoenix, Arizona"},{"name":"iAccord Alliance, Higley, Arizona"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Acham","family":"Gebremariam","sequence":"additional","affiliation":[{"name":"cSusan B. 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Meister Child Health Evaluation and Research Center (CHEAR), Michigan Medicine"},{"name":"dDepartment of Pediatrics, Michigan Medicine"},{"name":"jDepartment of Health Management and Policy, School of Public Health, University of Michigan, Ann Arbor, Michigan"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"417","published-online":{"date-parts":[[2024,5,3]]},"reference":[{"issue":"1","key":"2024060102532111600_B1","doi-asserted-by":"crossref","first-page":"201","DOI":"10.1146\/annurev-clinpsy-081219-101412","article-title":"Differences\/disorders of sex development: medical conditions at the intersection of sex and gender","volume":"18","author":"Sandberg","year":"2022","journal-title":"Annu Rev Clin Psychol"},{"issue":"2","key":"2024060102532111600_B2","doi-asserted-by":"crossref","first-page":"279","DOI":"10.1002\/ajmg.c.31561","article-title":"the DSD-TRN Advocacy Advisory Network, and Accord Alliance. 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