A Comparison of 2 Health-Related Quality of Life Measures in Pediatric Demyelination

Background: A first episode of acquired demyelination may be the first presentation of multiple sclerosis (MS) in children. The initial episode of demyelination may have physical, psychological, and social impacts, while the risk for MS may cause stress that can negatively affect quality of life.  Assessment of health-related quality of life (HRQOL) is of major importance in the evaluation of the effects of illness and treatment in childhood, but the utility of different QOL measures in pediatric demyelinating disorders is unknown.

Objectives: To compare HRQOL outcomes in pediatric patients with acquired demyelinating syndromes (ADS) using two well-known questionnaires, the PedsQL 4.0 and Kidscreen-27. 

Methods: Participants included 18 patients with ADS and 29 healthy controls between the ages of 8 and 18 years (ADS: mean=12.5 ± 2.4 months; controls: mean=14.5 ± 1.8 months).  Patients completed the PedsQL 4.0 and Kidscreen-27 child and adolescent self-report, and parents of the patients completed the PedsQL 4.0 and Kidscreen-27 parent proxy-report six months after first demyelinating attack (mean=6.3 ± 1.0 months). Groups were compared on the different scales of each questionnaire using analysis of variance.

Results: On the self- and parent-report of the PedsQL, the Physical, Emotional, and Social scales did not differ between groups.  However, lower School Functioning was reported by the patient group relative to controls on the self-report (73.3 vs. 83.8, p=.02) and the parent-report (68.2 vs. 85.4, p=.01). Overall score on the PedsQL was lower in the patient group on the parent version (76.9 vs. 85.5, p=.05), but not the self-report version (80.0 vs. 84.7, p=.19). On the Kidscreen, all scores were within the normal range and did not differ between groups (all p values >.50). 

Conclusions: The overall score on the PedsQL may be more sensitive in assessing the impact of HRQOL in children and adolescents with ADS. No one specific HRQOL function as assessed by the PedsQL and KIDSCREEN differentiated patients and controls, with the exception of the School Functioning scale on the PedsQL. The lower score on the School Functioning scale is consistent with patients having to miss school to make visits to the doctor within the first six months after a demyelinating event. Based on these findings and measurement properties of the PedsQL, we recommend its use for assessment of HRQOL in youth with ADS.