Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial

HEART-ACHD)

Anne Marie Valente, Michael J. Landzberg, Ann Gianola, Amy J. Harmon, Stephen Cook, Jennifer G. Ting, Karen Stout, Karen Kuehl, Paul Khairy, Joseph D. Kay, Michael Earing, Linda Houser, Craig Broberg, Carly Milliren, Alexander R. Opotowsky, Gary Webb, Amy Verstappen, Michelle Gurvitz

    Research output: Contribution to journalArticle

    13 Citations (Scopus)

    Abstract

    Objective The objective of this prospective multi-center study was to evaluate heart disease knowledge within the adult congenital heart disease (ACHD) population, pilot an educational intervention and assess interest in research participation among new patients at ACHD clinics. Background Many adults with congenital heart disease lack knowledge about their heart condition that may contribute to undesirable outcomes. Methods Patients ≥ 18 years of age were recruited upon their first presentation to an ACHD clinic and underwent an educational intervention consisting of creation of a personal health information 'passport' and an introduction to web-based resources. Subjects were asked to complete initial and follow-up surveys documenting their perceived knowledge. Results Nine hundred twenty-two subjects were recruited from 12 ACHD centers, and 520 (57%) completed follow-up surveys. Patients who completed the follow-up survey were more likely to be women, have more education, and have mild heart disease. At follow-up, the ability of the subjects to name their heart condition improved (78% to 83%, p = 0.002). Improvements were seen in mean Likert items regarding perceived knowledge of appropriate exercise (p <0.0001), symptoms of heart rhythm problems or endocarditis (p <0.0001), reasons for cardiac tests (p <0.007), and birth control options and pregnancy safety (p <0.0001). On follow-up, subjects reported a better understanding of medical research (p <0.01), and higher interest in research participation (p <0.003). Conclusion This joint clinician-patient pilot program will help inform future efforts toward patient education and participation in research with a focus on standardization of protocols for life-long longitudinal follow-up and continued multi-center collaboration in the ACHD population.

    Original languageEnglish (US)
    Pages (from-to)3236-3240
    Number of pages5
    JournalInternational Journal of Cardiology
    Volume168
    Issue number4
    DOIs
    StatePublished - Oct 9 2013

    Fingerprint

    Health Education
    Heart Diseases
    Research
    Personal Health Records
    Patient Participation
    Patient Education
    Endocarditis
    Contraception
    Population
    Names
    Biomedical Research
    Exercise
    Safety
    Education
    Pregnancy
    Surveys and Questionnaires

    Keywords

    • Adult congenital heart disease
    • Congenital heart disease
    • Patient education
    • Patient knowledge

    ASJC Scopus subject areas

    • Cardiology and Cardiovascular Medicine

    Cite this

    Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial : HEART-ACHD). / Valente, Anne Marie; Landzberg, Michael J.; Gianola, Ann; Harmon, Amy J.; Cook, Stephen; Ting, Jennifer G.; Stout, Karen; Kuehl, Karen; Khairy, Paul; Kay, Joseph D.; Earing, Michael; Houser, Linda; Broberg, Craig; Milliren, Carly; Opotowsky, Alexander R.; Webb, Gary; Verstappen, Amy; Gurvitz, Michelle.

    In: International Journal of Cardiology, Vol. 168, No. 4, 09.10.2013, p. 3236-3240.

    Research output: Contribution to journalArticle

    Valente, AM, Landzberg, MJ, Gianola, A, Harmon, AJ, Cook, S, Ting, JG, Stout, K, Kuehl, K, Khairy, P, Kay, JD, Earing, M, Houser, L, Broberg, C, Milliren, C, Opotowsky, AR, Webb, G, Verstappen, A & Gurvitz, M 2013, 'Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial: HEART-ACHD)', International Journal of Cardiology, vol. 168, no. 4, pp. 3236-3240. https://doi.org/10.1016/j.ijcard.2013.04.004
    Valente, Anne Marie ; Landzberg, Michael J. ; Gianola, Ann ; Harmon, Amy J. ; Cook, Stephen ; Ting, Jennifer G. ; Stout, Karen ; Kuehl, Karen ; Khairy, Paul ; Kay, Joseph D. ; Earing, Michael ; Houser, Linda ; Broberg, Craig ; Milliren, Carly ; Opotowsky, Alexander R. ; Webb, Gary ; Verstappen, Amy ; Gurvitz, Michelle. / Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial : HEART-ACHD). In: International Journal of Cardiology. 2013 ; Vol. 168, No. 4. pp. 3236-3240.
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    abstract = "Objective The objective of this prospective multi-center study was to evaluate heart disease knowledge within the adult congenital heart disease (ACHD) population, pilot an educational intervention and assess interest in research participation among new patients at ACHD clinics. Background Many adults with congenital heart disease lack knowledge about their heart condition that may contribute to undesirable outcomes. Methods Patients ≥ 18 years of age were recruited upon their first presentation to an ACHD clinic and underwent an educational intervention consisting of creation of a personal health information 'passport' and an introduction to web-based resources. Subjects were asked to complete initial and follow-up surveys documenting their perceived knowledge. Results Nine hundred twenty-two subjects were recruited from 12 ACHD centers, and 520 (57{\%}) completed follow-up surveys. Patients who completed the follow-up survey were more likely to be women, have more education, and have mild heart disease. At follow-up, the ability of the subjects to name their heart condition improved (78{\%} to 83{\%}, p = 0.002). Improvements were seen in mean Likert items regarding perceived knowledge of appropriate exercise (p <0.0001), symptoms of heart rhythm problems or endocarditis (p <0.0001), reasons for cardiac tests (p <0.007), and birth control options and pregnancy safety (p <0.0001). On follow-up, subjects reported a better understanding of medical research (p <0.01), and higher interest in research participation (p <0.003). Conclusion This joint clinician-patient pilot program will help inform future efforts toward patient education and participation in research with a focus on standardization of protocols for life-long longitudinal follow-up and continued multi-center collaboration in the ACHD population.",
    keywords = "Adult congenital heart disease, Congenital heart disease, Patient education, Patient knowledge",
    author = "Valente, {Anne Marie} and Landzberg, {Michael J.} and Ann Gianola and Harmon, {Amy J.} and Stephen Cook and Ting, {Jennifer G.} and Karen Stout and Karen Kuehl and Paul Khairy and Kay, {Joseph D.} and Michael Earing and Linda Houser and Craig Broberg and Carly Milliren and Opotowsky, {Alexander R.} and Gary Webb and Amy Verstappen and Michelle Gurvitz",
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    T1 - Improving heart disease knowledge and research participation in adults with congenital heart disease (The Health, Education and Access Research Trial

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    AU - Valente, Anne Marie

    AU - Landzberg, Michael J.

    AU - Gianola, Ann

    AU - Harmon, Amy J.

    AU - Cook, Stephen

    AU - Ting, Jennifer G.

    AU - Stout, Karen

    AU - Kuehl, Karen

    AU - Khairy, Paul

    AU - Kay, Joseph D.

    AU - Earing, Michael

    AU - Houser, Linda

    AU - Broberg, Craig

    AU - Milliren, Carly

    AU - Opotowsky, Alexander R.

    AU - Webb, Gary

    AU - Verstappen, Amy

    AU - Gurvitz, Michelle

    PY - 2013/10/9

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    N2 - Objective The objective of this prospective multi-center study was to evaluate heart disease knowledge within the adult congenital heart disease (ACHD) population, pilot an educational intervention and assess interest in research participation among new patients at ACHD clinics. Background Many adults with congenital heart disease lack knowledge about their heart condition that may contribute to undesirable outcomes. Methods Patients ≥ 18 years of age were recruited upon their first presentation to an ACHD clinic and underwent an educational intervention consisting of creation of a personal health information 'passport' and an introduction to web-based resources. Subjects were asked to complete initial and follow-up surveys documenting their perceived knowledge. Results Nine hundred twenty-two subjects were recruited from 12 ACHD centers, and 520 (57%) completed follow-up surveys. Patients who completed the follow-up survey were more likely to be women, have more education, and have mild heart disease. At follow-up, the ability of the subjects to name their heart condition improved (78% to 83%, p = 0.002). Improvements were seen in mean Likert items regarding perceived knowledge of appropriate exercise (p <0.0001), symptoms of heart rhythm problems or endocarditis (p <0.0001), reasons for cardiac tests (p <0.007), and birth control options and pregnancy safety (p <0.0001). On follow-up, subjects reported a better understanding of medical research (p <0.01), and higher interest in research participation (p <0.003). Conclusion This joint clinician-patient pilot program will help inform future efforts toward patient education and participation in research with a focus on standardization of protocols for life-long longitudinal follow-up and continued multi-center collaboration in the ACHD population.

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    KW - Adult congenital heart disease

    KW - Congenital heart disease

    KW - Patient education

    KW - Patient knowledge

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