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Published on: November 3, 2023
Mechanical ventilation in Duchenne muscular dystrophy: A pilot project in Ukraine
Anatolii Tsarenko1, Igor Trofimov2, Andriy Shatillo3
1Palliative and Hospice Medicine Department, Shupyk National Healthcare University of Ukraine, Kyiv, Ukraine.
Insights
Home mechanical ventilation (HMV) is feasible for children with Duchenne muscular dystrophy (DMD) in Ukraine. This pilot project demonstrated successful implementation and patient acceptance of HMV, highlighting the need for policy and equipment support.
Area of Science:
- Medical Science
- Pulmonology
- Neuromuscular Disorders
Background:
- Home mechanical ventilation (HMV) is crucial for extending survival in Duchenne muscular dystrophy (DMD) patients.
- Ukraine's healthcare system faced challenges in providing HMV for children with DMD.
Purpose of the Study:
- To evaluate the feasibility and implementation of a pilot home mechanical ventilation (HMV) project for children with Duchenne muscular dystrophy (DMD) in Ukraine.
- To assess patient adherence and short-term outcomes of HMV in this population.
Main Methods:
- A 5-day training program on non-invasive ventilation was provided to children with DMD at a regional hospital in Ukraine.
- Donated second-hand ventilators were utilized, with HMV indications based on specific clinical criteria due to monitoring limitations.
- Training included master classes for Ukrainian physicians on HMV implementation and management.
Main Results:
- Eight pediatric DMD patients participated, with most adopting nocturnal HMV with increasing use and minimal complaints after six weeks.
- Physician training involved both face-to-face and online master classes, engaging a significant number of Ukrainian doctors.
- The study demonstrated patient acceptance and increasing utilization of HMV among the participating children.
Conclusions:
- Home mechanical ventilation (HMV) implementation is achievable in pediatric Duchenne muscular dystrophy (DMD) inpatients within the Ukrainian context.
- Policy changes are recommended, including official recognition of HMV centers, funding for equipment, and ensuring availability of essential monitoring devices.
- Collaboration with local distributors is vital for the sustained provision and maintenance of HMV equipment and monitoring tools.
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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