OBJECTIVES: Although multiple sclerosis (MS) is typically diagnosed in adulthood, European studies report up to 20% of cases having paediatric onset (defined here as age ≤18 at study entry). This systematic review identified studies reporting health-related quality of life (HRQoL) or utilities in paediatric MS.

METHODS: MEDLINE, Embase, the Heath Technology Assessment (HTA) Database and NHS Economic Evaluation Database were queried 15 February 18, and EconLit on 8 February 18. Key conferences, UK HTAs, and included publications' bibliographies were hand-searched. Searches encompassed UK economic evaluations, UK costs and resource use, utilities and HRQoL, but the focus here is on utilities and HRQoL data reported for the paediatric population and their caregivers.

RESULTS: Of 3,839 records retrieved, none reported utilities and nine HRQoL in paediatric MS. Six used the PedsQL instrument (scale 0-100; worst-best HRQoL), with four reporting mean scores. For physical, emotional, social, and school functioning domains, these scores were 74.8–83.6, 56.3–77.2, 76.3–93.1 and 63.6–83.1, respectively. Comparing self- and parent-proxy-reported HRQoL with any instrument revealed mixed findings; in 3/7 studies, more self-reported than parent-reported outcomes were poorer, in 1/7 the reverse was true, and in 3/7 counts were equivalent. 3/3 studies comparing paediatric MS HRQoL with healthy control data found this was significantly poorer in the former in domains including physical, emotional and academic functioning. 1/1 studies reporting parent HRQoL (n=15) found no significant difference to scores from parents of children without MS (n=29). No studies compared HRQoL between adults and children with MS.

CONCLUSIONS: No utility studies in paediatric MS were identified. However, in this small evidence base, a HRQoL burden appears evident, with average domain scores suggesting a particular impact on emotional functioning. Interventions may affect HRQoL, however heterogeneity between studies limits an assessment of this.