Mechanical ventilation in Duchenne muscular dystrophy: A pilot project in Ukraine

Mechanical ventilation in Duchenne muscular dystrophy: A pilot project in Ukraine

Background Home mechanical ventilation (HMV) prolongs survival in patients with Duchenne muscular dystrophy (DMD) until ±35 years of age. This study evaluates the implementation of a HMV pilot project in children with DMD in Ukraine. Methods Children with DMD were invited to Kirovograd Regional Chil...

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Published in:Pediatrics international Vol. 64; no. 1; pp. e15225 - n/a
Main Authors: Tsarenko, Anatolii, Trofimov, Igor, Shatillo, Andriy, Kostiukova, Dariia, Kobylinskyi, Sergii, Melnyk, Svitlana, Riiatchenko, Svitlana, Berdykova, Yuliia, Morozova, Mariana, Marichuk, Mykola, Bondarenko, Stanislav, Gutarev, Andriy, Toussaint, Michel
Format: Journal Article
Language:English
Published: Tokyo Blackwell Publishing Ltd 01-01-2022
Subjects:
Age
Body mass index
Carbon dioxide
Children
developing country
Duchenne muscular dystrophy
Duchenne's muscular dystrophy
home mechanical ventilation
Mechanical ventilation
Muscular dystrophy
Patients
Pediatrics
Pilot projects
Pulse oximetry
Respiratory function
Sleep
Ukraine
Ukraine
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Summary:Background Home mechanical ventilation (HMV) prolongs survival in patients with Duchenne muscular dystrophy (DMD) until ±35 years of age. This study evaluates the implementation of a HMV pilot project in children with DMD in Ukraine. Methods Children with DMD were invited to Kirovograd Regional Children’s Clinical Hospital, Kropyvnytskyi, Ukraine, for 5 days’ training with non‐invasive ventilation. Donated equipment comprised second‐hand Covidien PB560 ventilators from Belgium. Due to the absence of carbon dioxide pressure and pulse oximetry monitoring, indications for HMV included sleep‐related symptoms, restrictive lung function test, loss of ambulation for more than 1 year, or age greater than 17 years. Master class lectures on HMV were conducted for Ukrainian doctors in conjunction with patient training. Results Twelve Ukrainian physicians took part in face‐to‐face master classes and 50 Ukrainian physicians participated in online master classes. Simultaneously, eight Duchenne inpatients, mean age 15.4 (SD: 1.8) years and body mass index 25.8 (SD: 4.0), were included in the study. All patients chose nasal masks and volume‐pressure‐assisted control mode. After 6 weeks, one patient stopped HMV, two others used HMV partially during sleep, and 5/8 used nocturnal HMV increasingly with few complaints. Follow up via phone call was organized after hospitalization. Conclusions Implementation of HMV is feasible in DMD inpatients in Ukraine. In the short term, the Ukrainian parliament should recognize official centers for HMV, and define the funding policy of equipment for HMV, and its maintenance. Local distributors should deliver equipment for HMV and devices for monitoring carbon dioxide pressure and pulse oximetry in specialized centers for HMV.
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ISSN:1328-8067
1442-200X
DOI:10.1111/ped.15225