Health-related quality of life and supportive care in patients with rare long-term neurological conditions

PURPOSE: Rare long-term neurological conditions (rLTNCs) may have significant impact on patients' health-related quality of life (HRQL); however, evidence is sparse. We assessed HRQL and access to supportive care in patients with rLTNCs. METHODS: Survey of patients with rare rLTNCs (motor neurone disease, Huntington's disease, cerebellar ataxia, progressive supranuclear palsy, multiple system atrophy, Charcot-Marie-Tooth disease and postpolio syndrome) to assess current access to health and social care, and HRQL using the Euroqol EQ-5D. RESULTS: A total of 266 participants with rLTNCs completed the survey. The HRQL of patients is substantially reduced compared to the general population. Many patients reported pain, were anxious or depressed and experienced problems with mobility, self-care and usual activities (mean EQ-5D index scores ranged from 0.2 to 0.44). Although some patients have accessed rehabilitative services, results suggest care coordination could be improved. CONCLUSIONS: Rare long-term neurological conditions have a significant impact on HRQL. Many patients with rLTNCs do not seem to be accessing the level of health and social care services that could improve their HRQL.