Adult Congenital Heart Disease Patients Experience Similar Symptoms of Disease Activity

Ari M. Cedars, Ada Stefanescu Schmidt, Craig Broberg, Ali Zaidi, Alexander Opotowsky, Jasmine Grewal, Joseph Kay, Ami B. Bhatt, Eric Novak, John Spertus

    Research output: Contribution to journalArticle

    1 Citation (Scopus)

    Abstract

    Background-There is a lack of objective data on the symptoms characterizing disease activity among adults with congenital heart disease (ACHD). The purpose of this study was to elicit the most important symptoms from patients across the spectrum of ACHD and to examine whether reported symptoms were similar across the spectrum of ACHD as a foundation for creating a patient-reported outcome measure(s). Methods and Results-We constructed a 39-item survey using input from physicians specializing in ACHD to assess the symptoms patients associate with disease activity. Patients (n=124) prospectively completed this survey, and the results were analyzed based on underlying anatomy and disease complexity. A confirmatory cohort of patients (n=40) was then recruited prospectively to confirm the validity of the initial data. When grouped based on underlying anatomy, significant differences in disease-related symptom rankings were found for only 6 of 39 symptoms. Six symptoms were identified which were of particular significance to patients, regardless of underlying anatomy. Patients with anatomy of great complexity experienced greater overall symptom severity than those with anatomy of low or moderate complexity, attributable exclusively to higher ranking of 5 symptoms. The second patient cohort had symptom experiences similar to those of the initial cohort, differing in only 5 of 39 symptoms. Conclusions-This study identified 6 symptoms relevant to patients across the spectrum of ACHD and remarkable homogeneity of patient experience, suggesting that a single disease-specific patient-reported outcome can be created for quality and outcome assessments.

    Original languageEnglish (US)
    Pages (from-to)161-170
    Number of pages10
    JournalCirculation: Cardiovascular Quality and Outcomes
    Volume9
    Issue number2
    DOIs
    StatePublished - Mar 1 2016

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    Heart Diseases
    Anatomy
    Outcome Assessment (Health Care)
    Physicians

    Keywords

    • adult congenital heart disease
    • disease-specific symptoms
    • outcome assessment
    • patient-reported outcome
    • quality of life

    ASJC Scopus subject areas

    • Cardiology and Cardiovascular Medicine

    Cite this

    Adult Congenital Heart Disease Patients Experience Similar Symptoms of Disease Activity. / Cedars, Ari M.; Stefanescu Schmidt, Ada; Broberg, Craig; Zaidi, Ali; Opotowsky, Alexander; Grewal, Jasmine; Kay, Joseph; Bhatt, Ami B.; Novak, Eric; Spertus, John.

    In: Circulation: Cardiovascular Quality and Outcomes, Vol. 9, No. 2, 01.03.2016, p. 161-170.

    Research output: Contribution to journalArticle

    Cedars, AM, Stefanescu Schmidt, A, Broberg, C, Zaidi, A, Opotowsky, A, Grewal, J, Kay, J, Bhatt, AB, Novak, E & Spertus, J 2016, 'Adult Congenital Heart Disease Patients Experience Similar Symptoms of Disease Activity', Circulation: Cardiovascular Quality and Outcomes, vol. 9, no. 2, pp. 161-170. https://doi.org/10.1161/CIRCOUTCOMES.115.002154
    Cedars, Ari M. ; Stefanescu Schmidt, Ada ; Broberg, Craig ; Zaidi, Ali ; Opotowsky, Alexander ; Grewal, Jasmine ; Kay, Joseph ; Bhatt, Ami B. ; Novak, Eric ; Spertus, John. / Adult Congenital Heart Disease Patients Experience Similar Symptoms of Disease Activity. In: Circulation: Cardiovascular Quality and Outcomes. 2016 ; Vol. 9, No. 2. pp. 161-170.
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