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Respiratory health service utilization of children with neuromuscular disease
Author(s) -
Rose Louise,
McKim Douglas,
Leasa David,
oyama Mika,
Tandon Anu,
Bai Yu Qing,
Goldstein Roger,
Amin Reshma,
Katz Sherri,
Gershon Andrea
Publication year - 2018
Publication title -
pediatric pulmonology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.866
H-Index - 106
eISSN - 1099-0496
pISSN - 8755-6863
DOI - 10.1002/ppul.24145
Subject(s) - medicine , pediatrics , population , cerebral palsy , cohort , neuromuscular disease , respiratory disease , guideline , respiratory therapist , respiratory system , emergency medicine , physical therapy , disease , intensive care medicine , environmental health , pathology , lung
Objectives To quantify health service utilization including assessment, monitoring, and treatment of respiratory complications of children with neuromuscular disease (NMD), identifying practice variation and adherence to guideline recommendations at a population level. Methods North American population‐based cohort study (2003‐2015) of children with NMD using hospital diagnostic and physician billing codes within health administrative databases. Results We identified 18 163 children with NMD. Mean (SD) age was 7.8 (5.6) years with 40% ≤5; 45% were female. Most common diagnoses were cerebral palsy (50%) and spina bifida (16%); 8% had muscular dystrophy. From fiscal years 2003‐2014, 15 600 (86%) children went to an emergency department on average 3.5 times every 3 years; 6575 (36%) for respiratory reasons. 8788 (48%) were admitted to hospital with 2190 (12%) for respiratory reasons and 2451 (13%) required intensive care. Respiratory specialist outpatient visits occurred for 2226 (12%) children on average 6.5 visits every 3 years; 723 (4%) had in‐hospital respiratory specialist consultation. Pulmonary function testing was conducted in 3194 (18%) children on average 2.4 times every 3 years; sleep studies in 1389 (8%). Conclusion In this population‐based study of children with NMD, healthcare utilization for respiratory complications was considerable. Frequency of respiratory specialist consultation, monitoring of respiratory function and sleep disordered breathing was variable but on average reflected professional society recommendations. Children with NMD are frequent ED users suggesting a need to improve community and social supports. We did not detect reduced access to respiratory monitoring or specialist consultation in adolescents transitioning to adult services.