Long‐term clinical follow‐up of patients undergoing percutaneous alcohol septal reduction for symptomatic obstructive hypertrophic cardiomyopathy

Md, Silvia Fortunato de Cano; Cano, Manuel; Costa, José de Ribamar; Pinheiro, Jairo Alves; Barretto, Rodrigo Bellio de Mattos; Bihan, David Costa de Souza Le; Abizaid, Alexandre; Sousa, A; Sousa, J. Eduardo

doi:10.1002/ccd.26430

“…The articles describing the experiences of patients with HCM identified in the literature review revealed shortness of breath or dyspnea, chest pain (angina) [31,32], and fainting (syncope) [31][32][33] to be the primary complaints/symptoms of patients with HCM.…”

Section: Literature Reviewmentioning

confidence: 99%

“…Similarly, all three HCM professional guideline documents describe patients with HCM as having common symptoms of dyspnea, palpitations, chest pain (angina), and fainting (syncope) [1,3,4]. Furthermore, the literature review identified fatigue [4], tachyarrhythmia [32,33], orthopnea [9], pulmonary congestion [1], excessive sweating [4], and heart failure [4,33] as additional symptoms experienced by some patients with HCM.…”

Section: Literature Reviewmentioning

confidence: 99%

“…These symptoms identified by the literature review were considered highly impactful on the mental health, physical functioning, and overall quality of life of patients [16,18,[32][33][34][35]. Depression was also commonly reported in several studies [32,33] and on the patient advocacy websites [29,30]. The most commonly reported impact measured in the literature review was anxiety, which was mentioned in four studies [33][34][35].…”

Section: Literature Reviewmentioning

confidence: 99%

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Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life

Zaiser

¹

,

Sehnert²,

Duenas

³

et al. 2020

J Patient Rep Outcomes

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Background 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 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. Methods Development 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. Results The 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. Conclusions A 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.

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“…The articles describing the experiences of patients with HCM identi ed in the literature review revealed shortness of breath or dyspnea, chest pain (angina) (30,31), and syncope (30)(31)(32) to be the primary complaints/symptoms of patients with HCM.…”

Section: Literature Reviewmentioning

confidence: 99%

“…Similarly, all three HCM professional guideline documents describe patients with HCM as having common symptoms of dyspnea, palpitations, chest pain (angina), and syncope (1, 3, 4). Furthermore, the literature review identi ed fatigue (4), tachyarrhythmia (31,32), orthopnea (9), pulmonary congestion (1), excessive sweating (4), and heart failure (4, 32) as additional symptoms experienced by some patients with HCM.…”

Section: Literature Reviewmentioning

confidence: 99%

Patient experiences with obstructive and nonobstructive hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life

Zaiser

¹

,

Sehnert

²

,

Duenas

³

et al. 2020

Preprint

0

View full text Add to dashboard Cite

Background 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 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. Methods Development 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. Results The 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. Conclusions A 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.

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A toast to no sternotomy

Yadav

¹

,

Eng

²

2016

Cathet Cardio Intervent

0

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Long‐term clinical follow‐up of patients undergoing percutaneous alcohol septal reduction for symptomatic obstructive hypertrophic cardiomyopathy

Abstract: In this long-term clinical follow-up without losses, ASA was effective in improving quality of life and NYHA functional class, with relatively low mortality and very low need for immediate permanent pacemaker implantation. © 2016 Wiley Periodicals, Inc.

Cited by 10 publications

References 24 publications

Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life

Patient experiences with hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life

Patient experiences with obstructive and nonobstructive hypertrophic cardiomyopathy: a conceptual model of symptoms and impacts on quality of life

A toast to no sternotomy

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