User‐perceived impact of long‐term mechanical assisted cough in paediatric neurodisability

Abstract

AbstractAimTo (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).MethodThis 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).ResultsSeventy‐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).InterpretationMI‐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.