Productivity Impacts and the Need for Carer Support in Obstructive HCM: A Patient and Carer Survey
Author(s)
Neil Reynolds, PhD1, Wendy Zhong, PhD2, Michael Hurst, BSc, MSc3, Vijaya Mudaliar, MPH1, Laura Mirams, Phd1.
1Adelphi Real World, BOLLINGTON, United Kingdom, 2Bristol Myers Squibb, Basking Ridge, NJ, USA, 3Bristol Myers Squibb, Uxbridge, United Kingdom.
1Adelphi Real World, BOLLINGTON, United Kingdom, 2Bristol Myers Squibb, Basking Ridge, NJ, USA, 3Bristol Myers Squibb, Uxbridge, United Kingdom.
OBJECTIVES: Obstructive hypertrophic cardiomyopathy (HCM) is associated with a substantial symptomatic burden which impacts on quality of life. This study aimed to explore the broader societal impacts of the disease on employment/career, as well as the need for support from informal carers (such as family/friends), and the impacts on those carers themselves.
METHODS: A cross-sectional online survey of patients (≥18 years) diagnosed with symptomatic (New York Heart Association [NYHA] class II-IV) obstructive HCM and their informal carers was conducted in Canada, with participants recruited via physicians. All analyses were descriptive.
RESULTS: Among 29 patients surveyed (48% male, mean age = 63.8 years), most were diagnosed NYHA class II obstructive HCM (n=24), n=5 were NYHA class III. 34% (n=10) were currently employed; 28% stopped working/took an early retirement since developing symptoms and 10% changed job/reduced responsibilities. Of 10 patients in employment, 3 anticipated a future impact on their employment/career. Thirteen patients (45%) reported having made a symptom-related lifestyle modification. Eight patients who stopped working/retired early after experiencing obstructive HCM symptoms reported reasons as fatigue (50%), shortness of breath (38%) and other obstructive HCM symptoms (38%). 45% of patients required carer support owing to obstructive HCM. Amongst the 11 patients (38%) currently receiving support from family or friends, the median number of support hours per week was 8; 4 patients reported an increase in support required since their diagnosis. Among informal carers surveyed (n=10, 30% male, mean age = 61.3 years), 8 carers lived with the person with obstructive HCM; 3 were currently employed. 4 carers reported that caring had impacted their own employment/career, and 5 reported a negative impact of caring on their life.
CONCLUSIONS: Obstructive HCM is associated with a substantial need for carer support and has notable impacts on employment/career and everyday life for both patients and their informal carers.
METHODS: A cross-sectional online survey of patients (≥18 years) diagnosed with symptomatic (New York Heart Association [NYHA] class II-IV) obstructive HCM and their informal carers was conducted in Canada, with participants recruited via physicians. All analyses were descriptive.
RESULTS: Among 29 patients surveyed (48% male, mean age = 63.8 years), most were diagnosed NYHA class II obstructive HCM (n=24), n=5 were NYHA class III. 34% (n=10) were currently employed; 28% stopped working/took an early retirement since developing symptoms and 10% changed job/reduced responsibilities. Of 10 patients in employment, 3 anticipated a future impact on their employment/career. Thirteen patients (45%) reported having made a symptom-related lifestyle modification. Eight patients who stopped working/retired early after experiencing obstructive HCM symptoms reported reasons as fatigue (50%), shortness of breath (38%) and other obstructive HCM symptoms (38%). 45% of patients required carer support owing to obstructive HCM. Amongst the 11 patients (38%) currently receiving support from family or friends, the median number of support hours per week was 8; 4 patients reported an increase in support required since their diagnosis. Among informal carers surveyed (n=10, 30% male, mean age = 61.3 years), 8 carers lived with the person with obstructive HCM; 3 were currently employed. 4 carers reported that caring had impacted their own employment/career, and 5 reported a negative impact of caring on their life.
CONCLUSIONS: Obstructive HCM is associated with a substantial need for carer support and has notable impacts on employment/career and everyday life for both patients and their informal carers.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR192
Topic
Patient-Centered Research
Topic Subcategory
Patient-reported Outcomes & Quality of Life Outcomes
Disease
Cardiovascular Disorders (including MI, Stroke, Circulatory), No Additional Disease & Conditions/Specialized Treatment Areas