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User-perceived impact of long-term mechanical assisted cough in paediatric neurodisability
Brit Hov1,2, Tiina Andersen3,4, Michel Toussaint5
1Division of Paediatric and Adolescent Medicine, Oslo University Hospital, Oslo, Norway.
Insights
Mechanical insufflation-exsufflation (MI-E) is beneficial for children with NMDs and CNS disorders. Most children are reluctant to stop MI-E, and it positively impacts their quality of life.
Area of Science:
- Pediatric Pulmonology
- Neurology
- Rehabilitation Medicine
Background:
- Mechanical insufflation-exsufflation (MI-E) is a vital respiratory support technique for children with neuromuscular and central nervous system disorders.
- Understanding the perceived benefits and impact on quality of life is crucial for optimizing treatment adherence and patient outcomes.
Purpose of the Study:
- To compare the perceived benefits of long-term MI-E in children with neuromuscular disorders (NMDs) versus central nervous system (CNS) disorders.
- To assess changes in healthcare needs and treatment routines post-MI-E initiation.
- To describe the health-related quality of life (HRQoL) in this pediatric population.
Main Methods:
- A cross-sectional study involving 73 children using MI-E.
- Data collection via questionnaires (Visual Analogue Scale for benefit, DISABKIDS for HRQoL) and memory card data.
- Comparison of perceived benefit, willingness to pause treatment, healthcare needs, and treatment routines between NMD and CNS groups.
Main Results:
- MI-E was highly beneficial, with high Visual Analogue Scale scores (median 9-10).
- 62% were reluctant to pause MI-E, with no significant difference between NMD and CNS groups.
- Children with NMDs reported fewer physician consultations and hospitalizations after MI-E initiation.
- The mean HRQoL score was 71 (SD 16.7).
Conclusions:
- MI-E is perceived as beneficial and is performed similarly in children with NMDs and CNS disorders.
- HRQoL in this population is comparable to other moderate-to-severe chronic conditions.
- MI-E is a valuable treatment for improving respiratory function and quality of life in pediatric patients.
Aim:
To (1) compare the perceived benefit of long-term mechanical insufflation-exsufflation (MI-E) of children with neuromuscular disorders (NMDs) and central nervous system (CNS) disorders, including health care needs and treatment routines and (2) describe the children's health-related quality of life (HRQoL).
Method:
This cross-sectional study used a questionnaire and memory card data to assess the perceived benefit of MI-E via the Visual Analogue Scale (VAS; 10 maximum), willingness to pause treatment, level of health care needs before and after MI-E initiation, and the children's treatment routines. A DISABKIDS questionnaire assessed HRQoL (100 maximum).
Results:
Seventy-three children using MI-E participated (42 males, median [interquartile range {IQR}] age 10 years 2 months [6 years 3 months-14 years 1 month]), 47 with NMDs (such as spinal muscular atrophy and Duchenne muscular dystrophy) and 26 with CNS disorders (such as cerebral palsy, encephalitis, neurometabolic and other diseases). The median (IQR) VAS score for the perceived benefit of MI-E therapy at stable state and respiratory tract infection were 9 (6-10) and 10 (8.5-10) respectively. Sixty-two per cent were reluctant or unwilling to pause MI-E therapy, with no NMD versus CNS disorder group difference. After MI-E initiation, fewer physician consultations and hospitalizations were reported by the group with NMDs. The MI-E routine was similar in both groups. The mean (SD) HRQoL score for 26 of 51 eligible children was 71 (16.7).
Interpretation:
MI-E treatment was generally perceived as beneficial and performed equally in both diagnostic groups. HRQoL was in line with children with a moderate-to-severe chronic condition.
What This Paper Adds:
Mechanical insufflation-exsufflation (MI-E) was generally perceived as beneficial by the children and parents. The reported benefit of MI-E was higher among daily than sporadic MI-E users. The MI-E treatment routine did not differ between diagnostic groups. The health-related quality of life in this neuropaediatric population was in line with that of children with other moderate-to-severe chronic conditions.
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