Impact of Cardiac Sarcoidosis on Health-Related Quality of Life

Abstract Background Cardiac sarcoidosis (CS) carries a poorer prognosis than other sarcoidosis subtypes, but its impact on health-related quality of life (HRQoL) remains insufficiently characterised. Aims To assess HRQoL in CS compared with pulmonary sarcoidosis (PS) and Finnish population norms, and to examine the prognostic value of patient-reported outcomes. Methods and Results In this multicentre cohort, 240 CS patients from the MIDFIN registry and 65 PS patients completed the RAND-36 and Fatigue Severity Scale. CS patients (median age 56 years; 75% women) had significantly lower physical functioning (PF) and role-physical (RP) scores than PS patients and age- and sex-standardised Finnish population norms (p<0.001). Mental health domains did not differ significantly between CS and PS. Fatigue was comparable (FSS 4.2 vs 3.8; p=0.149). Impairment was most pronounced in CS patients with reduced LVEF and prior VT/VF or heart failure; those with preserved LVEF and no adverse events had scores similar to PS. Over 36 months, 38 CS patients experienced composite adverse events (27 VT/VF, 7 deaths, 2 heart transplants, 1 LVAD, 1 pericardiocentesis for sarcoid pericarditis). In multivariable Cox regression, each 10-point decrement in PF (HR 1.16, 95% CI 1.02–1.32, p=0.028) and RP (HR 1.14, 95% CI 1.04–1.25, p=0.006) independently predicted adverse events, outperforming NYHA class, which lost independent prognostic significance when PF or RP was included in the model. Conclusion CS substantially impairs physical HRQoL, and lower PF and RP scores predict adverse outcomes beyond conventional risk markers, supporting integration of HRQoL assessment into routine CS risk stratification.

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Journal
European Heart Journal - Valvular and Structural Heart Disease
Published
2026-04-27
DOI
https://doi.org/10.1093/ehjvshd/xwag035
Primary Topic
Sarcoidosis and Beryllium Toxicity Research
Type
article
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article

Impact of Cardiac Sarcoidosis on Health-Related Quality of Life

Tuomas T. Rissanen, Kari Kaikkonen, Tapani Vihinen, Heikki Miettinen et al.
European Heart Journal - Valvular and Structural Heart Disease
Sarcoidosis and Beryllium Toxicity Research
article

Impact of Cardiac Sarcoidosis on Health-Related Quality of Life

Tuomas T. Rissanen, Kari Kaikkonen, Tapani Vihinen, Heikki Miettinen, Tuomas Kerola, Petri Haataja, Julia Raak-Tarkiainen, Jukka Lehtonen, Päivi Pietilä-Effati
article en

Abstract

Abstract Background Cardiac sarcoidosis (CS) carries a poorer prognosis than other sarcoidosis subtypes, but its impact on health-related quality of life (HRQoL) remains insufficiently characterised. Aims To assess HRQoL in CS compared with pulmonary sarcoidosis (PS) and Finnish population norms, and to examine the prognostic value of patient-reported outcomes. Methods and Results In this multicentre cohort, 240 CS patients from the MIDFIN registry and 65 PS patients completed the RAND-36 and Fatigue Severity Scale. CS patients (median age 56 years; 75% women) had significantly lower physical functioning (PF) and role-physical (RP) scores than PS patients and age- and sex-standardised Finnish population norms (p<0.001). Mental health domains did not differ significantly between CS and PS. Fatigue was comparable (FSS 4.2 vs 3.8; p=0.149). Impairment was most pronounced in CS patients with reduced LVEF and prior VT/VF or heart failure; those with preserved LVEF and no adverse events had scores similar to PS. Over 36 months, 38 CS patients experienced composite adverse events (27 VT/VF, 7 deaths, 2 heart transplants, 1 LVAD, 1 pericardiocentesis for sarcoid pericarditis). In multivariable Cox regression, each 10-point decrement in PF (HR 1.16, 95% CI 1.02–1.32, p=0.028) and RP (HR 1.14, 95% CI 1.04–1.25, p=0.006) independently predicted adverse events, outperforming NYHA class, which lost independent prognostic significance when PF or RP was included in the model. Conclusion CS substantially impairs physical HRQoL, and lower PF and RP scores predict adverse outcomes beyond conventional risk markers, supporting integration of HRQoL assessment into routine CS risk stratification.

European Heart Journal - Valvular and Structural Heart Disease
University of Helsinki (FI), Oulu University Hospital (FI), Helsinki University Hospital (FI), Turku University Hospital (FI), North Karelia Central Hospital (FI), Kuopio University Hospital (FI), Vaasa Central Hospital (FI), Tampere University Hospital (FI), Päijät-Hämeen Keskussairaala (FI), Tampere University (FI)
No poverty
Openalex Percentile: Top 11%
Sarcoidosis and Beryllium Toxicity Research
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