Abstract
BackgroundHypertrophic cardiomyopathy (HCM) is a primary myocardial disorder defined by left ventricular hypertrophy that cannot be explained by another cardiac or systemic disease. There is a general lack of knowledge about patients’ perspectives on the symptoms and day-to-day limitations they experience as a result of HCM. We therefore sought an in-depth understanding of patients’ experiences of obstructive (oHCM) and nonobstructive (nHCM) forms of the disease, including symptoms and their quality of life impacts, and to develop a conceptual model to capture them.MethodsDevelopment of the HCM conceptual model involved a web-based survey to capture patients’ insights, a targeted literature review (which included relevant guidelines and patient advocacy websites), one-to-one interviews with clinical experts, and one-to-one qualitative concept elicitation interviews with patients. Key symptoms and their impacts most important to patients’ experiences were identified and used to develop a conceptual model of the patient experience with HCM.ResultsThe HCM symptoms reported by patient interviewees (n = 27) were largely consistent with findings from the patient web survey (n = 444), literature review, and interviews with three expert clinicians. The symptoms most commonly reported in patient interviews included tiredness (89%), shortness of breath (89%), shortness of breath with physical activity (89%), and dizziness/light-headedness (89%). Other symptoms commonly reported included chest pain (angina) (70%), chest pain (angina) with physical exertion (70%), and palpitations (fluttering or rapid heartbeat) (81%). The most commonly reported impacts of HCM symptoms on patients’ lives included limitations to physical activities (78%), emotional impacts, including feeling anxious or depressed (78%), and impacts on work (63%). Symptoms and impacts were similar for both oHCM and nHCM.ConclusionsA conceptual model was developed, which identifies the core symptoms that patients with oHCM and nHCM reported as most frequent and most important: shortness of breath, palpitations, fatigue/tiredness, dizziness/light-headedness, and chest pain, as well as the impacts those symptoms have on patients’ lives. This HCM conceptual model reflecting patients’ experiences and perspectives was used in the development of a patient-reported outcomes instrument for use in clinical trials and it may also help inform the clinical management of HCM.
Highlights
Hypertrophic cardiomyopathy (HCM) is a primary myocardial disorder defined by left ventricular hypertrophy that cannot be explained by another cardiac or systemic disease [1,2,3,4]
Development of a conceptual model to better understand the symptoms and impacts experienced by patients with Obstructive HCM (oHCM) and Nonobstructive HCM (nHCM) involved a sequence of steps: a patient web survey to capture their insights; a targeted literature review; one-to-one interviews with clinical experts; and one-to-one qualitative concept elicitation interviews with patients
58.0% reported a diagnosis of oHCM (i.e. “have you been diagnosed with left ventricular outflow tract obstruction?”), 33.1% reported a diagnosis of nHCM, and 8.8% did not know their specific HCM condition
Summary
Hypertrophic cardiomyopathy (HCM) is a primary myocardial disorder defined by left ventricular hypertrophy that cannot be explained by another cardiac or systemic disease. There is a general lack of knowledge about patients’ perspectives on the symptoms and day-to-day limitations they experience as a result of HCM. We sought an in-depth understanding of patients’ experiences of obstructive (oHCM) and nonobstructive (nHCM) forms of the disease, including symptoms and their quality of life impacts, and to develop a conceptual model to capture them. Approximately 1/500 people in the general population is thought to be affected by HCM, but the number of diagnosed cases is less than 1/ 3000 [1, 3, 5]. HCM is a clinically heterogeneous disease, with a diverse clinical presentation and course. It can be a debilitating and life-changing disease resulting in impaired functionality and reduced quality of life [8, 9]. The most commonly reported symptoms are shortness of breath, especially with physical exertion, fatigue, chest pain, palpitations from arrhythmias including atrial flutter or atrial fibrillation, dizziness, and fainting (or syncope) [1, 2, 5, 8, 10, 11]
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