Self-perceived Health Exceeds Societal Valuation Across Cardiac Neuromuscular Disease: Implications for Device Therapy Decision-making.

Background: Cardiac complications are a leading cause of mortality in neuromuscular disease (NMD). Clinical assessment typically infers quality of life from functional impairment, which may overlook the disability paradox. We examined how patient-reported domain impairment, societal health valuation, and self-perceived health relate to one another in cardiac NMD. Methods: We surveyed 156 patients (61% response rate) at a specialized cardiac NMD clinic using the EuroQol 5-Dimension 5-Level questionnaire. Three constructs were compared: domain impairment (5 domain levels); societal valuation (Index Score); and self-perceived health (Visual Analogue Scale [VAS]). Spearman correlations quantified associations; VAS was compared across mobility strata by Kruskal-Wallis testing. Results: The cohort included 47% with cardiomyopathy and 28% with conduction disease. Ninety-one percent reported impairment in at least 1 domain, most often mobility (74%) and pain/discomfort (71%). VAS and Index Score were moderately correlated (ρ = 0.544, Conclusions: In cardiac NMD, self-perceived health declines less steeply than societal valuation as functional impairment worsens, consistent with psychological adaptation. Direct measurement of patient-reported well-being should inform shared decision-making around device therapies.