Pediatric-onset multiple sclerosis is associated with reduced parental health–related quality of life and family functioning

Abstract

Background:

Diagnosis of multiple sclerosis (MS) during childhood has the potential to impact the affected child’s self-perception and the health-related quality of life (HRQoL) of the family.

Objective:

To evaluate the impact of chronic disease, in children ascertained as having MS and their families, when compared to those with monophasic acquired demyelinating syndrome (monoADS).

Methods:

In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the Pediatric Quality of Life Inventory (PedsQL^™) Modules.

Results:

Participants (58 MS; 178 monoADS) provided cross-sectional HRQoL data a median (interquartile range (IQR)) of 4.1 (2.0–6.0) years after disease onset. The HRQoL of parents of children with MS and their family functioning was lower when compared to that of parents and families of children with monoADS (both p < 0.001); parents of children with MS reported greater emotional dysfunction, worry, worse communication, and lower family functioning irrespective of clinical disease activity. Self-reports of the MS and monoADS participants did not suggest a difference in overall HRQoL or fatigue after adjusting for age of the child at the time of assessment.

Conclusion:

While children with MS did not self-report lower HRQoL compared to children who experienced monoADS, the diagnosis of MS during childhood was negatively associated with parental HRQoL and family functioning.