{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,31]],"date-time":"2025-12-31T03:31:30Z","timestamp":1767151890845,"version":"build-2238731810"},"reference-count":31,"publisher":"Cambridge University Press (CUP)","issue":"9","license":[{"start":{"date-parts":[[2025,7,31]],"date-time":"2025-07-31T00:00:00Z","timestamp":1753920000000},"content-version":"unspecified","delay-in-days":0,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":["cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2025,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec id=\"S1047951125101157_as1\">\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>Single ventricle CHD requires lifelong care, yet its broader impact on patients and families remains unclear. Engaging patients in care improvement can strengthen relationships and outcomes.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951125101157_as2\">\n                    <jats:title>Objectives:<\/jats:title>\n                    <jats:p>This study evaluates how individuals with single ventricle CHD prioritise gaps in care based on personal and family impact.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951125101157_as3\">\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>Using Mery et al.\u2019s identified care gaps, a survey was distributed to parents of children with single ventricle CHD and adults with single ventricle CHD in English or Spanish. Participants rated each gap from 1(not important) to 10(extremely important), with a \u201cNot Applicable\u201d option. Responses were analysed using median, weighted, and total rating scores. Sociodemographic data were examined, and univariate analysis and a race\/ethnicity and insurance matrix were conducted on parent responses.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951125101157_as4\">\n                    <jats:title>Results:<\/jats:title>\n                    <jats:p>\n                      Among 36 complete responses, 30(83.3%) were parents and 6(16.7%) patients. Most parents were female(29,96.7%), White non-Hispanic(24,80.0%), with 17(6.7%) having privately insured children. Median child age was 6.5[interquartile range: 3.0\u201312.8] years, and 55.3% had Hypoplastic Left Heart Syndrome. The highest-rated gap was \u201cUncertainty of prognosis in adulthood\u201d (9.5[interquartile range: 8.0\u201310.0]). The lowest was \u201cPregnancy termination presented repeatedly\u201d (1.0[interquartile range: 1.0\u20137.0]). Non-White parents rated \u201cTransition to adult healthcare\u201d (\n                      <jats:italic>p<\/jats:italic>\n                      = 0.017) and \u201cNavigating resources\u201d (\n                      <jats:italic>p<\/jats:italic>\n                      = 0.037) higher. Patients (median age 33.0 years) prioritised \u201cRescheduling surgical procedures\u201d and \u201cTransition to adult healthcare\u201d (both 10.0). \u201cSupport in family planning\u201d had the highest total rating score(12). The lowest-rated was \u201cLimited guidance on transition to adolescence\u201d (0.0[interquartile range:0.0\u20130.0]).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec id=\"S1047951125101157_as5\">\n                    <jats:title>Conclusions:<\/jats:title>\n                    <jats:p>Patients and families prioritise care gaps differently. Aligning their perspectives with clinical expertise can guide tailored solutions to improve outcomes for single ventricle CHD patients.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1017\/s1047951125101157","type":"journal-article","created":{"date-parts":[[2025,7,31]],"date-time":"2025-07-31T07:02:19Z","timestamp":1753945339000},"page":"1871-1880","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":0,"title":["Prioritising gaps in care in the real-life journey of single ventricle CHD"],"prefix":"10.1017","volume":"35","author":[{"ORCID":"https:\/\/orcid.org\/0009-0003-8129-6092","authenticated-orcid":false,"given":"Maria E.","family":"Hoyos","sequence":"first","affiliation":[{"name":"The University of Texas at Austin"},{"name":"Texas Center for Pediatric and Congenital Heart Disease"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mario","family":"O\u2019Connor","sequence":"additional","affiliation":[{"name":"The University of Texas at Austin"},{"name":"Texas Center for Pediatric and Congenital Heart Disease"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos M.","family":"Mery","sequence":"additional","affiliation":[{"name":"Vanderbilt University Medical Center"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kathleen","family":"Carberry","sequence":"additional","affiliation":[{"name":"The University of Texas at Austin"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7313-9658","authenticated-orcid":false,"given":"Alexandra","family":"Lamari-Fisher","sequence":"additional","affiliation":[{"name":"The University of Texas at Austin"},{"name":"Texas Center for Pediatric and Congenital Heart Disease"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Eileen","family":"Steward","sequence":"additional","affiliation":[{"name":"The University of Texas at Austin"},{"name":"Texas Center for Pediatric and Congenital Heart Disease"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Dillingham","sequence":"additional","affiliation":[{"name":"The University of Texas at Austin"},{"name":"Texas Center for Pediatric and Congenital Heart Disease"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charles D.","family":"Fraser","sequence":"additional","affiliation":[{"name":"The University of Texas at Austin"},{"name":"Texas Center for Pediatric and Congenital Heart Disease"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrew","family":"Well","sequence":"additional","affiliation":[{"name":"Vanderbilt University Medical Center"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"56","published-online":{"date-parts":[[2025,7,31]]},"reference":[{"key":"S1047951125101157_ref20","doi-asserted-by":"publisher","DOI":"10.1161\/JAHA.124.034757"},{"key":"S1047951125101157_ref11","unstructured":"11. 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