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Journal of General Internal Medicine

, Volume 33, Issue 10, pp 1700–1707 | Cite as

Heart Failure Home Management Challenges and Reasons for Readmission: a Qualitative Study to Understand the Patient’s Perspective

  • Jonathan Sevilla-Cazes
  • Faraz S. Ahmad
  • Kathryn H. Bowles
  • Anne Jaskowiak
  • Tom Gallagher
  • Lee R. Goldberg
  • Shreya Kangovi
  • Madeline Alexander
  • Barbara Riegel
  • Frances K. Barg
  • Stephen E. Kimmel
Original Research

Abstract

Background

Heart failure patients have high 30-day hospital readmission rates. Interventions designed to prevent readmissions have had mixed success. Understanding heart failure home management through the patient’s experience may reframe the readmission “problem” and, ultimately, inform alternative strategies.

Objective

To understand patient and caregiver challenges to heart failure home management and perceived reasons for readmission.

Design

Observational qualitative study.

Participants

Heart failure patients were recruited from two hospitals and included those who were hospitalized for heart failure at least twice within 30 days and those who had been recently discharged after their first heart failure admission.

Approach

Open-ended, semi-structured interviews. Conclusions vetted using focus groups.

Key Results

Semi-structured interviews with 31 patients revealed a combination of physical and socio-emotional influences on patients’ home heart failure management. Major themes identified were home management as a struggle between adherence and adaptation, and hospital readmission as a rational choice in response to distressing symptoms. Patients identified uncertainty regarding recommendations, caused by unclear instructions and temporal incongruence between behavior and symptom onset. This uncertainty impaired their competence in making routine management decisions, resulting in a cycle of limit testing and decreasing adherence. Patients reported experiencing hopelessness and frustration in response to perceiving a deteriorating functional status. This led some to a cycle of despair characterized by worsening adherence and negative emotions. As these cycles progressed and distressing symptoms worsened, patients viewed the hospital as the safest place for recovery and not a “negative” outcome.

Conclusion

Cycles of limit testing and despair represent important patient-centered struggles in managing heart failure. The resulting distress and fear make readmission a rational choice for patients rather than a negative outcome. Interventions (e.g., palliative care) that focus on methods to address these patient-centered factors should be further studied rather than methods to reduce hospital readmissions.

KEY WORDS

heart failure qualitative research care management care transitions patient-centered outcomes research 

Notes

Acknowledgements

The authors would like to acknowledge the contribution of Elizabeth Stelson, MSW; Breah Paciotti, MPH; and their colleagues in the Mixed Methods Research Lab (MMRL). Ms. Stelson and Ms. Paciotti conducted and coded the qualitative interviews with assistance from the MMRL staff.

The team would like to dedicate this article to Thomas Gallagher, our patient partner, who changed the way we understand the experience of people with heart failure. Tom passed away as this article was being prepared, but his voice will live on through these words.

Contributors

All those who contributed to the manuscript meet criteria for authorship.

Prior Presentations

This work was presented as a poster on April 3rd, 2017, at the 2017 American Heart Association Quality of Care and Outcomes Research Scientific Sessions in Arlington, VA.

Funders

This work has received funding from the following sources:

•PCORI grant 1IP2PI000186-02 to SEK and FKB

•American Heart Association 2016 Student Scholarship in Cardiovascular Disease to JSC.

Compliance with Ethical Standards

Conflict of Interest

The authors would like to disclose the following potential conflicts of interests:

Jonathan Sevilla-Cazes, MD, MPH: None

Kathryn H Bowles, PhD, RN, FAAN, FACMI: None

Faraz S. Ahmad, MD: None

Tom Gallagher: None

Shreya Kangovi, MD, MSHP: None

Lee R Goldberg, MD, MPH: Medtronic

Lynn Alexander: None

Anne Jaskowiak, MS, BSW: None

Barbara Riegel, PhD, RN, FAAN, FAHA: None

Frances K Barg, PhD, MEd: None

Stephen E Kimmel, MD, MSCE: Bayer, Pfizer.

Supplementary material

11606_2018_4542_MOESM1_ESM.pdf (51 kb)
ESM 1 (PDF 50 kb)

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Copyright information

© Society of General Internal Medicine 2018

Authors and Affiliations

  • Jonathan Sevilla-Cazes
    • 1
  • Faraz S. Ahmad
    • 2
  • Kathryn H. Bowles
    • 3
  • Anne Jaskowiak
    • 1
  • Tom Gallagher
    • 1
  • Lee R. Goldberg
    • 1
  • Shreya Kangovi
    • 1
  • Madeline Alexander
    • 1
  • Barbara Riegel
    • 3
  • Frances K. Barg
    • 1
  • Stephen E. Kimmel
    • 1
  1. 1.Perelman School of Medicine University of PennsylvaniaPhiladelphiaUSA
  2. 2.Northwestern University Feinberg School of MedicineChicagoUSA
  3. 3.University of Pennsylvania School of NursingPhiladelphiaUSA

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