Abstract
OR2. Exploring Experiences Associated with Hypertrophic Cardiomyopathy Diagnosis, Treatment and Life Impact Among Middle-aged and Older Adults: An Interview Study
Heart & lung, Vol.50(4), pp.559-560
07/2021
DOI: 10.1016/j.hrtlng.2021.03.054
Abstract
Hypertrophic cardiomyopathy (HCM) is a clinically and genetically heterogeneous disorder and an important cause of sudden death and heart failure. Limited studies exist that describe diagnosis, treatment, and management experiences of patients with hypertrophic cardiomyopathy. The purpose of this investigation was to use qualitative data collection methodologies to characterize HCM patient experiences related to HCM diagnosis, treatment, self-management, and the life impacts of HCM.
Adults aged ≥18 years diagnosed with HCM ≥1-year prior were recruited to participate. Semi-structured interviews were conducted via teleconference using open-ended questions and question probes. Interview recordings were transcribed verbatim and inductive and deductive thematic analyses were conducted.
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%). Time to diagnosis from symptom onset ranged from <1 week to 26 years. Participants with longer time to diagnosis described having atypical HCM symptoms, denial of their own symptoms, and experiences of misdiagnoses. Several sources of information about HCM and support for dealing with HCM were utilized, including patients' personal healthcare professionals, websites, conferences, and social media. Participants described experiencing anxiety, denial, and upset feelings about being diagnosed with HCM, but also reported feelings of gratitude, acceptance, and increased mindfulness toward healthy habits. Individuals reported making changes in daily activities because of reduced physical capacity and making changes in lifestyles (e.g. where to live or travel) because of desire to be close to HCM specialists. However, participants also described becoming less fearful over time through utilization of available resources and treatment options.
These results indicate that adults living with HCM can experience many involuntary physical and psychological limitations and restrictions on life. This study indicates a need for healthcare professionals to be aware of the potential impact of HCM on patients and to provide patient support focused on increasing resilience for patients in need. These findings provide information useful for developing strategies and resources for patients and their families. The negative consequences experienced by patients as a result of inaccurate and/or delayed diagnoses and suboptimal interdisciplinary communication between healthcare professionals indicate potential areas of need. Identifying interventions aimed at improving recognition of typical and atypical of HCM symptomology, adherence to clinical practice guidelines for HCM diagnosis and treatment, and collaborative and effective interdisciplinary communication, are critical for exceptional patient care for those with HCM.
Details
- Title: Subtitle
- OR2. Exploring Experiences Associated with Hypertrophic Cardiomyopathy Diagnosis, Treatment and Life Impact Among Middle-aged and Older Adults: An Interview Study
- Creators
- Deena Zytnick - American Heart AssociationFerhaan Ahmad - University of IowaSharon Cresci - Washington University in St. LouisDebbie Heard - American Heart AssociationChristina Shay - American Heart AssociationAnjali Tiku Owens - University of Pennsylvania
- Resource Type
- Abstract
- Publication Details
- Heart & lung, Vol.50(4), pp.559-560
- Publisher
- Elsevier Inc
- DOI
- 10.1016/j.hrtlng.2021.03.054
- ISSN
- 0147-9563
- eISSN
- 1527-3288
- Language
- English
- Date published
- 07/2021
- Academic Unit
- Molecular Physiology and Biophysics; Fraternal Order of Eagles Diabetes Research Center; Internal Medicine; Radiology; Cardiovascular Medicine
- Record Identifier
- 9984302194302771
Metrics
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