PT - JOURNAL ARTICLE AU - Louise Rose AU - Douglas McKim AU - David Leasa AU - Mika Nonoyama AU - Anu Tandon AU - Yu Qing Bai AU - Reshma Amin AU - Sherri Katz AU - Roger Goldstein AU - Andrea Gershon TI - Patterns of healthcare utilisation for respiratory complications of adults with neuromuscular disease: a population study AID - 10.1183/13993003.00754-2018 DP - 2018 Sep 01 TA - European Respiratory Journal PG - 1800754 VI - 52 IP - 3 4099 - http://erj.ersjournals.com/content/52/3/1800754.short 4100 - http://erj.ersjournals.com/content/52/3/1800754.full SO - Eur Respir J2018 Sep 01; 52 AB - Our objective was to quantify health service utilisation including monitoring and treatment of respiratory complications for adults with neuromuscular disease (NMD), identifying practice variation and adherence to guideline recommendations at a population level.We conducted a population-based longitudinal cohort study (2003–2015) of adults with NMD using hospital diagnostic and health insurance billing codes within administrative health databases.We identified 185 586 adults with NMD. Mean age 52 years, 59% female. 41 173 (22%) went to an emergency department for respiratory complications on average 1.6 times every 3 years; 14 947 (8%) individuals were admitted to hospital 1.4 times every 3 years. Outpatient respiratory specialist visits occurred for 64 084 (35%) with four visits every 3 years, although substantial variation in visit frequency was found. 157 285 (85%) went to the emergency department (all-cause) almost 4 times every 3 years, 100 052 (54%) were admitted to hospital. Individuals with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) had more emergency department visits compared with other types of NMD (p<0.0001).One-third of adults with NMD received respiratory specialist care at a frequency recommended by professional guidelines, although substantial variation exists. Emergent healthcare utilisation was substantial, emphasising the burden of NMD on the healthcare system and urgent need to improve community and social supports, particularly for ALS/MND patients.One-third of adults with neuromuscular disease received specialist respiratory care. Emergent healthcare use was substantial, emphasising an urgent need to improve community and social supports. http://ow.ly/FluZ30leuLk