Introduction Narcolepsy is a chronic neurological condition in which the brain’s ability to regulate the sleep-wake cycle is disturbed and can result in reduced quality of life (QOL). A positive association between exercise and QOL has been found in children. The aim of this study was to assess the feasibility of implementation of an exercise intervention with a mobile app to monitor outcomes in children with narcolepsy.

Methods This feasibility study received service evaluation (SE1308), and University of Sheffield ethical approval (project number: 022995). A patient and parent engagement exercise to inform study design was carried out during the ‘Sheffield Children’s Hospital Annual Narcolepsy Family Day’. An exercise intervention was designed based upon NHS recommendations and tailored to the child’s activity levels.¹ Weekly goals were set and progress was reviewed weekly, using an app specifically developed by Aparito Ltd (Wrexham, UK). QOL was monitored using the Pediatric Quality of Life Inventory (PedsQL). Patients were asked for feedback at the end of the intervention, to assess its feasibility and acceptability.

Results 117 children and parents took part in the engagement exercise. 12 patients took part in the feasibility study (mean age 12.9 years). The focus group highlighted the importance of motivation, timing and tailoring exercise interventions to the individual. Children said exercise should be fun to help motivation.

Average physical activity increased from 229 minutes to 254 minutes. Of those who had successfully increased their exercise, baseline average PedsQL score increased from 70.6 to 77.6 (figure 1). Feedback on the app and exercise intervention were both positive.

• Download figure
• Open in new tab
• Download powerpoint

Abstract P012 Figure 1

Average Baseline and Post-intervention PedsQL Scores (Successful Interventions)

Conclusion This feasibility study has shown that a targeted exercise intervention can improve QOL in children with narcolepsy. The Aparito app, it is being developed further for children with narcolepsy.

Reference

1. Health Survey for England 2015: Physical Activity for Children