The interaction between health-related quality of life and caregiver burden in patients with neuromuscular disease

Chronic respiratory failure is common in patients with neuromuscular diseases (NMD). Although home mechanical ventilation (HMV) increases survival, the impact on patients’ health-related quality of life (HRQoL) can be variable and impact on family caregivers is not well known. Patient HRQoL was assessed using S3-NIV and individualised neuromuscular quality of life (INQoL) tools. Caregiver burden was measured using the Zarit burden interview (ZBI). Caregiver perceptions of their relative’s health (RHR) and mood (RMR) were scored on a 4-point Likert scale. Data are reported as median (IQR). 22 patient-caregiver dyads were included (age 33[24-49]yrs). Causes of chronic respiratory failure were Duchenne muscular dystrophy(59%), amyotrophic lateral sclerosis(27%), other NMD(14%). HMV prescription was 67% overnight, 5% 16-24 hrs and 28% 24 hrs. Spearman correlations are displayed in Table 1. These data demonstrate that caregiver burden is negatively impacted upon by HRQoL and perceived health status of their relative. Caregivers’ assessment of the mood of their relative aligns with objective HRQoL measures, strongly supporting the utility of these measures in determining the impact of HMV on patient wellbeing. The significant burden on caregivers requires recognition and support and interventions for HMV patient caregivers to reduce burden are urgently required. erjor;12/suppl_17/192/TB1 T1 TB1 Table 1:Cross-sectional assessments and key correlations Median (IQR) Key Correlations r p Patient HRQoL S3-NIV (0–10; higher better) 7.12 (5.0-8.2) Vs ZBI -0.53 0.02 INQoL (0-100; lower better) 61.7 (41.1-69.0) Vs RMR -0.71