Feasibility of a Computerized Method to Measure Quality of “Everyday” Life in Children with Neuromuscular Disorders

ABSTRACT

Measurement of quality of life is becoming increasingly important in health care. Self-reported quality of life is the preferred method of gathering this information, but children are often excluded from this process, their input being replaced by parent-proxy report. This feasibility study tested assessment of “daily” quality-of-life by a self-reported computerized method in boys with neuromuscular disorders. To establish feasibility, the method was required to be engaging, consistent, and convenient. Ten boys, aged 9–16 years, were given a personal digital assistant (PDA) and prompted randomly, eight times/day for 1 week, to answer 19 questions about their daily experiences (including happiness, mood, self-esteem, location, and activity). Subjects completed sampling with an acceptable response rate (79%). Split-week reliability analysis for participant variability (r = 0.45–0.88) indicated acceptable consistency. Participants reported that the method was easy and convenient, and analysis of standardized mean scores supported internal validity. The computerized method to assess “daily” quality of life, from the child's perspective, was feasible and may be useful to understand the impact of disease progression and interventions on day-to-day function.

KEYWORDS. :

• Child
• experience sampling method
• neuromuscular disorders
• quality of life

Declaration of interest: The authors report no conflict of interest. The authors alone are responsible for the content and writing of this paper.