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Parental Preferences Regarding Outpatient Management of Children with Congenital Heart Disease

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Abstract

The objective of this study was to identify patterns of health care usage among children with congenital heart disease (CHD) and determine predictors for contacting cardiologists for routine care. Parents of children with CHD completed surveys, indicating which provider they would contact first for 12 concerns. Predictors for preference for cardiologist evaluation were identified by multivariable logistic regression. Surveys were completed by 307 of 925 (33.2 %) parents. Median patient age was 9.4 years [interquartile range (IQR) 5.1–14.4 years] with a median of 1 cardiac surgery (IQR 1–3). Most parents agreed primary care physicians (PCPs) could identify problems related to CHD (70.0 %) and when to refer to cardiologists (89.6 %). More felt PCPs best understood their values (63.2 vs. 29.6 %, P < 0.001) and were more accessible (63.5 vs. 33.6 %, P < 0.001) than cardiologists. Parents preferred first evaluation by PCPs for 9 of 12 concerns. Preference for cardiology evaluation was independently associated with the number of cardiac catheterizations [adjusted odds ratio (AOR) for ≥2 catheterizations 2.4, 95 % confidence interval (CI) 1.1–4.9], belief the cardiologist better knew the child’s medical history (AOR 2.4, 95 % CI 1.3–4.6), and provider accessibility (AOR 3.6, 95 % CI 1.8–7.4). Parents of CHD patients reported close alignment with PCPs and would contact PCPs first for most routine care. However, some populations continue to contact cardiologists for routine care. Further study is needed to clarify best practices for clinician and parent education.

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Abbreviations

AOR:

Adjusted odds ratio

CI:

Confidence interval

CHD:

Congenital heart disease

IOM:

Institute of Medicine

IQR:

Interquartile range

PCP:

Primary care physician

PedsQL:

Pediatric Quality of Life Inventory™

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Authors and Affiliations

  1. Section of Hospital Medicine, Children’s Hospital Colorado, 13123 E. 16th Avenue, B302, Aurora, CO, 80045, USA

    Sarah K. Luthy

  2. Division of Pediatric Cardiology, C. S. Mott Children’s Hospital, Ann Arbor, MI, USA

    Sunkyung Yu, Janet E. Donohue, Emefah Loccoh, Caren S. Goldberg & Jimmy C. Lu

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  1. Sarah K. Luthy
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  2. Sunkyung Yu
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  3. Janet E. Donohue
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Correspondence to Sarah K. Luthy.

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Luthy, S.K., Yu, S., Donohue, J.E. et al. Parental Preferences Regarding Outpatient Management of Children with Congenital Heart Disease. Pediatr Cardiol 37, 151–159 (2016). https://doi.org/10.1007/s00246-015-1257-7

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  • DOI: https://doi.org/10.1007/s00246-015-1257-7

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