Journal article
Exploring experiences of hypertrophic cardiomyopathy diagnosis, treatment, and impacts on quality of life among middle-aged and older adults: An interview study
Heart & lung, Vol.50(6), pp.788-793
11/01/2021
DOI: 10.1016/j.hrtlng.2021.06.004
PMID: 34225089
Abstract
Background: Limited studies exist that describe diagnosis, treatment, and management experiences of patients with hypertrophic cardiomyopathy (HCM). This study's purpose is to characterize patient experiences related to symptom onset, diagnosis, symptom management, support from healthcare professionals, and impacts on daily living.
Methods: Semi-structured interviews were conducted using open-ended questions and question probes were conducted with adults aged >= 18 years diagnosed with HCM >= 1 year prior. Interview recordings were transcribed verbatim and inductive and deductive thematic analyses were performed.
Results: A total of 32 interviews were conducted. The majority of participants were female (53.1%), aged >= 45 years (90.6%), white (96.9%), and non-Hispanic (96.9%). Participants with longer time to HCM diagnosis described having atypical HCM symptoms, denial of their own symptoms, and experiences of misdiagnoses. For HCM information and support, participants utilized personal healthcare professionals as well as nonmedical resources. Participants described experiences of anxiety, denial, and upset feelings about their diagnosis, but also gratitude, acceptance, and increased mindfulness toward healthy habits. Individuals reported making changes in daily activities because of reduced physical capacity and making changes in lifestyle choices because of desire to be close to HCM specialists. Over time, participants also described becoming less fearful through utilization of available resources and treatment options.
Conclusions: The diverse but often challenging experiences of individuals with HCM suggest that increasing availability and utilization of HCM patient resources may be effective at reducing the unfavorable physical and psychological impacts of HCM. Common reports of misdiagnoses resulting in delayed HCM diagnosis also indicate a need for HCM-related educational opportunities for healthcare professionals. (C) 2021 Elsevier Inc. All rights reserved.
Details
- Title: Subtitle
- Exploring experiences of hypertrophic cardiomyopathy diagnosis, treatment, and impacts on quality of life among middle-aged and older adults: An interview study
- Creators
- Deena Zytnick - American Heart AssociationDebbie Heard - American Heart AssociationFerhaan Ahmad - University of IowaSharon Cresci - Washington University in St. LouisAnjali Tiku Owens - University of PennsylvaniaChristina M. Shay - American Heart Association
- Resource Type
- Journal article
- Publication Details
- Heart & lung, Vol.50(6), pp.788-793
- Publisher
- Elsevier
- DOI
- 10.1016/j.hrtlng.2021.06.004
- PMID
- 34225089
- ISSN
- 0147-9563
- eISSN
- 1527-3288
- Number of pages
- 6
- Language
- English
- Date published
- 11/01/2021
- Academic Unit
- Radiology; Molecular Physiology and Biophysics; Cardiovascular Medicine; Fraternal Order of Eagles Diabetes Research Center; Internal Medicine
- Record Identifier
- 9984297495702771
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