{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,28]],"date-time":"2026-07-28T19:49:10Z","timestamp":1785268150181,"version":"3.55.0"},"reference-count":24,"publisher":"SAGE Publications","issue":"6","license":[{"start":{"date-parts":[[2020,3,2]],"date-time":"2020-03-02T00:00:00Z","timestamp":1583107200000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Journal of Patient Experience"],"published-print":{"date-parts":[[2020,12]]},"abstract":"<jats:p>Children with single-ventricle heart disease (SVHD) are at risk for morbidity across multiple organ systems. A single-ventricle multidisciplinary clinic (SVMDC) may address complex health-care needs by providing access to, and coordination among, pediatric subspecialties. However, the patient and family experience of multidisciplinary care for SVHD remains unexplored. We e-mailed a 26-question survey to families after an SVMDC visit, which included evaluation with subspecialists from cardiology, pulmonology, gastroenterology, neuropsychology, and pediatric psychology, as well as social activities during clinic. Responses were anonymized to protect privacy, and data were analyzed quantitatively and qualitatively. Over 3 years, 22% (27\/122) of families completed the survey. Overall, families\u2019 experiences were positive, with 100% reporting that they would recommend the SVMDC to others. Qualitative themes emerged regarding logistics, multidisciplinary care, key takeaways from clinic, and connection-making with other families. A multidisciplinary clinic demonstrated overall acceptability and perceived benefit to families of children with SVHD. Considerations for mixed experiences regarding financial commitment and connection-making among parents are discussed, as are the benefits of the synergy achieved through multidisciplinary care.<\/jats:p>","DOI":"10.1177\/2374373520904214","type":"journal-article","created":{"date-parts":[[2020,3,2]],"date-time":"2020-03-02T05:41:17Z","timestamp":1583127677000},"page":"1384-1390","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":9,"title":["Patient and Family Experience in a Multidisciplinary Clinic for Children With Single-Ventricle Heart Disease"],"prefix":"10.1177","volume":"7","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4754-4577","authenticated-orcid":false,"given":"Kelly R","family":"Wolfe","sequence":"first","affiliation":[{"name":"Neuroscience Institute, Section of Pediatric Neurology, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital Colorado, Aurora, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah L","family":"Kelly","sequence":"additional","affiliation":[{"name":"Heart Institute, Section of Pediatric Cardiology, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital Colorado, Aurora, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Deborah R","family":"Liptzin","sequence":"additional","affiliation":[{"name":"Breathing Institute, Section of Pulmonary Medicine, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital Colorado, Aurora, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dania","family":"Brigham","sequence":"additional","affiliation":[{"name":"Digestive Health Institute, Section of Pediatric Gastroenterology, Hepatology and Nutrition, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital Colorado Aurora, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Carey","family":"Rafferty","sequence":"additional","affiliation":[{"name":"Heart Institute, Section of Pediatric Cardiology, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital Colorado, Aurora, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Adel K","family":"Younoszai","sequence":"additional","affiliation":[{"name":"Heart Institute, Section of Pediatric Cardiology, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital Colorado, Aurora, CO, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0346-8517","authenticated-orcid":false,"given":"Michael V","family":"Di Maria","sequence":"additional","affiliation":[{"name":"Heart Institute, Section of Pediatric Cardiology, Department of Pediatrics, University of Colorado School of Medicine, Children\u2019s Hospital 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