title: Hypoplastic Left Heart Syndrome: Exploring a Paradigm Shift in Favor of Surgery.
abstract: We hypothesized that enthusiasm for surgery increased for infants with hypoplastic left heart syndrome (HLHS) at Columbia University Medical Center (CUMC) between 1995 and 2012. We sought to identify factors that engendered this paradigm shift. Confidential surveys were distributed to providers at CUMC in 1995 and 2012 to measure enthusiasm for surgical intervention for HLHS. Surgical preference scores are presented as median [interquartile range]. Surveys were completed by 99/176 providers (56 % response rate) in 1995 and 153/267 (57 %) in 2012. The median surgical preference score for infants with HLHS increased from 35 [25-45] in 1995 to 45 [35-50] in 2012, P < 0.001. 53 %, 95 % CI [42, 64] of respondents recommended surgical intervention for a ward of the court in 1995 compared to 81 % [73, 89] in 2012, P < 0.001. In 2012, 64 % [53, 75] of respondents were more likely to recommend surgery than 10 years prior. The percentage of respondents who saw good outcomes following three-stage repair increased from 49 % [38, 60] in 1995 to 84 % [78, 90] in 2012, P < 0.001. The majority believed that parents should have the option of comfort care, 91 % [85, 97] in 1995 and 85 % [79, 91] in 2012, P = 0.06. In both eras, prematurity and additional surgical problems dissuaded providers from recommending surgical intervention. Despite the fact that most providers have seen good outcomes and now recommend surgery for infants with HLHS, the majority of providers still believe that the option of comfort care should be available to families.
authors: Division of Pediatric Cardiology, Department of Pediatrics, New York-Presbyterian Morgan Stanley Children's Hospital, Columbia University Medical Center, 3959 Broadway, CHN-253, New York, NY, 10032, USA. eas2188@columbia.edu.
authors: Erin A
authors: http://orcid.org/0000-0002-6134-9367
authors: EA
authors: Paul
authors: Division of Neonatology and Bioethics, Department of Pediatrics, New York-Presbyterian Morgan Stanley Children's Hospital, Columbia University Medical Center, 3959 Broadway, CHN-253, New York, NY, 10032, USA.
authors: Kristina
authors: K
authors: Orfali
authors: Division of Pediatric Cardiology, Department of Pediatrics, New York-Presbyterian Morgan Stanley Children's Hospital, Columbia University Medical Center, 3959 Broadway, CHN-253, New York, NY, 10032, USA.
authors: Thomas J
authors: TJ
authors: Starc
mesh_terms: D006801:Humans; D018636:Hypoplastic Left Heart Syndrome; D010166:Palliative Care; D010290:Parents; D011795:Surveys and Questionnaires
keywords: Cardiac surgery; Comfort care; Congenital heart disease; Counseling; Hypoplastic left heart syndrome