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“They diagnosed bad heart”: A qualitative exploration of patients' knowledge about and experiences with heart failure

  • Keri L. Rodriguez
    Correspondence
    Corresponding author: Keri L. Rodriguez, PhD, Research Health Scientist, CHERP, VA Pittsburgh Healthcare System, 7180 Highland Drive (151C-H), Rm. 4083E, Pittsburgh, PA 15206.
    Affiliations
    Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania

    Division of General Internal Medicine, Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
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  • Cathleen J. Appelt
    Affiliations
    Mental Illness Research, Education and Clinical Center, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania
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  • Galen E. Switzer
    Affiliations
    Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania

    Division of General Internal Medicine, Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania

    Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania
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  • Ali F. Sonel
    Affiliations
    Center for Health Equity Research and Promotion, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania

    Cardiology Division, Veterans Affairs Pittsburgh Healthcare System, Pittsburgh, Pennsylvania

    Cardiovascular Institute, University of Pittsburgh, Pittsburgh, Pennsylvania
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  • Robert M. Arnold
    Affiliations
    Division of General Internal Medicine, Department of Medicine, University of Pittsburgh School of Medicine, Pittsburgh, Pennsylvania

    Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, Pennsylvania

    Institute to Enhance Palliative Care, University of Pittsburgh, Pittsburgh, Pennsylvania.
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      Background

      Patient education is central to the management of individuals with heart failure; therefore, it is important to know what these patients understand and experience both clinically and personally.

      Objectives

      This study qualitatively explored patients' knowledge regarding a heart failure diagnosis, their understanding of their cardiac care providers' treatment recommendations, and their views concerning the impact of heart failure on their daily lives and prognosis.

      Methods

      A qualitative study was conducted whereby data were collected through 25 telephone interviews with adults being followed for heart failure at a Veterans Affairs medical center. Subjects were interviewed using semistructured open-ended questions. Audiotaped responses were analyzed using grounded theory methods.

      Results

      The majority of participants were elderly, male, and white, and had New York Heart Association class II disease. Participants without angina typically experienced a lengthy and difficult diagnostic delay, with symptoms misattributed to comorbid diseases. Most understood the importance of self-monitoring and adhering to physician recommendations, and their discussions of life-changing effects typically focused on loss of physical functioning and decreased quality of life. Although participants wanted to know their prognosis, most had not received information about it or about advance care planning.

      Conclusion

      Patients require opportunities for enhanced communication with physicians and health care team members during the challenging diagnostic period and subsequently need more information about their medical condition and prognosis.
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