Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial)

Michelle Gurvitz, Anne Marie Valente, Craig Broberg, Stephen Cook, Karen Stout, Joseph Kay, Jennifer Ting, Karen Kuehl, Michael Earing, Gary Webb, Linda Houser, Alexander Opotowsky, Amy Harmon, Dionne Graham, Paul Khairy, Ann Gianola, Amy Verstappen, Michael Landzberg

    Research output: Contribution to journalArticle

    109 Citations (Scopus)

    Abstract

    Objectives: The goal of this project was to quantify the prevalence of gaps in cardiology care, identify predictors of gaps, and assess barriers to care among adult congenital heart disease (adult CHD) patients. Background: Adult CHD patients risk interruptions in care that are associated with undesired outcomes. Methods: Patients (18 years of age and older) with their first presentation to an adult CHD clinic completed a survey regarding gaps in, and barriers to, care. Results: Among 12 adult CHD centers, 922 subjects (54% female) were recruited. A >3-year gap in cardiology care was identified in 42%, with 8% having gaps longer than a decade. Mean age at the first gap was 19.9 years. The majority of respondents had more than high school education and knew their heart condition. The most common reasons for gaps included feeling well, being unaware that follow-up was required, and complete absence from medical care. Disease complexity was predictive of a gap in care with 59% of mild, 42% of moderate, and 26% of severe disease subjects reporting gaps (p <0.0001). Clinic location significantly predicted gaps (p <0.0001), whereas sex, race, and education level did not. Common reasons for returning to care were new symptoms, referral from provider, and desire to prevent problems. Conclusions: Adult CHD patients have gaps in cardiology care; the first lapse commonly occurred at age ∼19 years, a time when transition to adult services is contemplated. Gaps were more common among subjects with mild and moderate diagnoses and at particular locations. These results provide a framework for developing strategies to decrease gaps and address barriers to care in the adult CHD population.

    Original languageEnglish (US)
    Pages (from-to)2180-2184
    Number of pages5
    JournalJournal of the American College of Cardiology
    Volume61
    Issue number21
    DOIs
    StatePublished - May 28 2013

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    Health Education
    Heart Diseases
    Cardiology
    Research
    Sex Education
    Emotions
    Referral and Consultation
    Education
    Population
    Surveys and Questionnaires

    Keywords

    • access to care
    • barriers
    • congenital

    ASJC Scopus subject areas

    • Cardiology and Cardiovascular Medicine

    Cite this

    Prevalence and predictors of gaps in care among adult congenital heart disease patients : HEART-ACHD (The Health, Education, and Access Research Trial). / Gurvitz, Michelle; Valente, Anne Marie; Broberg, Craig; Cook, Stephen; Stout, Karen; Kay, Joseph; Ting, Jennifer; Kuehl, Karen; Earing, Michael; Webb, Gary; Houser, Linda; Opotowsky, Alexander; Harmon, Amy; Graham, Dionne; Khairy, Paul; Gianola, Ann; Verstappen, Amy; Landzberg, Michael.

    In: Journal of the American College of Cardiology, Vol. 61, No. 21, 28.05.2013, p. 2180-2184.

    Research output: Contribution to journalArticle

    Gurvitz, M, Valente, AM, Broberg, C, Cook, S, Stout, K, Kay, J, Ting, J, Kuehl, K, Earing, M, Webb, G, Houser, L, Opotowsky, A, Harmon, A, Graham, D, Khairy, P, Gianola, A, Verstappen, A & Landzberg, M 2013, 'Prevalence and predictors of gaps in care among adult congenital heart disease patients: HEART-ACHD (The Health, Education, and Access Research Trial)', Journal of the American College of Cardiology, vol. 61, no. 21, pp. 2180-2184. https://doi.org/10.1016/j.jacc.2013.02.048
    Gurvitz, Michelle ; Valente, Anne Marie ; Broberg, Craig ; Cook, Stephen ; Stout, Karen ; Kay, Joseph ; Ting, Jennifer ; Kuehl, Karen ; Earing, Michael ; Webb, Gary ; Houser, Linda ; Opotowsky, Alexander ; Harmon, Amy ; Graham, Dionne ; Khairy, Paul ; Gianola, Ann ; Verstappen, Amy ; Landzberg, Michael. / Prevalence and predictors of gaps in care among adult congenital heart disease patients : HEART-ACHD (The Health, Education, and Access Research Trial). In: Journal of the American College of Cardiology. 2013 ; Vol. 61, No. 21. pp. 2180-2184.
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    abstract = "Objectives: The goal of this project was to quantify the prevalence of gaps in cardiology care, identify predictors of gaps, and assess barriers to care among adult congenital heart disease (adult CHD) patients. Background: Adult CHD patients risk interruptions in care that are associated with undesired outcomes. Methods: Patients (18 years of age and older) with their first presentation to an adult CHD clinic completed a survey regarding gaps in, and barriers to, care. Results: Among 12 adult CHD centers, 922 subjects (54{\%} female) were recruited. A >3-year gap in cardiology care was identified in 42{\%}, with 8{\%} having gaps longer than a decade. Mean age at the first gap was 19.9 years. The majority of respondents had more than high school education and knew their heart condition. The most common reasons for gaps included feeling well, being unaware that follow-up was required, and complete absence from medical care. Disease complexity was predictive of a gap in care with 59{\%} of mild, 42{\%} of moderate, and 26{\%} of severe disease subjects reporting gaps (p <0.0001). Clinic location significantly predicted gaps (p <0.0001), whereas sex, race, and education level did not. Common reasons for returning to care were new symptoms, referral from provider, and desire to prevent problems. Conclusions: Adult CHD patients have gaps in cardiology care; the first lapse commonly occurred at age ∼19 years, a time when transition to adult services is contemplated. Gaps were more common among subjects with mild and moderate diagnoses and at particular locations. These results provide a framework for developing strategies to decrease gaps and address barriers to care in the adult CHD population.",
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    AU - Cook, Stephen

    AU - Stout, Karen

    AU - Kay, Joseph

    AU - Ting, Jennifer

    AU - Kuehl, Karen

    AU - Earing, Michael

    AU - Webb, Gary

    AU - Houser, Linda

    AU - Opotowsky, Alexander

    AU - Harmon, Amy

    AU - Graham, Dionne

    AU - Khairy, Paul

    AU - Gianola, Ann

    AU - Verstappen, Amy

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