DA08
Pediatric-Onset Multiple Sclerosis Is Associated with Reduced Parental Health-Related Quality of Life and Family Functioning

Friday, June 1, 2018: 3:45 PM
104 C-E (Nashville Music City Center)
Julia O'Mahony, BSc , Hospital for Sick Children, Toronto, ON, Canada
Ruth Ann Marrie, MD, PhD , University of Manitoba, Winnipeg, MB, Canada
Amit Bar-Or, MD , University of Pennsylvania, Philadelphia, PA
E Ann Yeh, MD , Hospital for Sick Children, Toronto, ON, Canada
Brenda Banwell, MD , Children's Hospital of Philadelphia, Philadelphia, PA



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.

Objectives: The impact on HRQoL of chronic disease, in children ascertained as having MS and their families, was compared to that of monophasic (mono) ADS.

Methods: In a national prospective cohort study of pediatric acquired demyelinating syndromes (ADS), the HRQoL of children and their families was captured using the PedsQLTM Modules.

Results: Participants (58 MS; 178 monoADS) provided cross-sectional HRQoL data a median (IQR) of 4.1 (2.0-6.0) years after disease onset. The HRQoL of parents of children with MS and the level of family functioning was lower when compared to that of 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.

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

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