Abstract
Background: Duchenne Muscular Dystrophy (DMD) poses significant challenges, especially in Low- and Middle-Income Countries (LMIC) with limited access to Non-Invasive Mechanical Ventilation (NIV), which prolongs life expectancy. Two years after Stage 1 of the successfull “1500 years of survival” NIV programme commenced with 8 DMD boys in Ukraine in 2021, this study further explores the Stage 2 of the programme in 2023. Method: DMD patients underwent a 5-day training program at the National Children’s Clinical Hospital “Okhmatdyt” in Kyiv, Ukraine, utilizing donated second-hand bilevel intermittent positive presure ventilators. Indications for NIV included: sleep-related symptoms, high Apnea-Hypopnea Index (AHI>10 events/hour), decreased Forced Vital Capacity (FVC=50%), low minimum saturation during sleep (SpO2<88%), or age above 17 years. Parallel Masterclass on NIV was conducted for Ukrainian healthcare professionals and patients’ parents. Findings: Thirteen DMD inpatients, aged (mean ± standard deviation) 14.8±2.6 years and FVC of 1.8±0.4L (65.5±22.8% predicted value) were enrolled. Criteria for NIV initiation were: age>17 years (n: 4), FVC% =50% (n :6), AHI>10 (n :2) and SpO2<88% (n :5). Follow-up phone calls were conducted to monitor progress. Three months post-hospitalization, all 13 patients consistently adhered to nocturnal ventilator treatment with a mean use of 7.5 hours per night. Conclusions: Despite the lack of equipment and system of reimbursement, the implementation of the comprehensive Stage 2 training programme supplying NIV for DMD patients in an LMIC such as in Ukraine, was a successful experience. The next steps in the home NIV programme will take place in the coming years.
Published Version
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