The Impact of Child Health on Parent Health: Parent health-related quality of life after a child is diagnosed with Multiple Sclerosis

Abstract

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. To test this, children ascertained as having MS are compared to that of children with monophasic acquired demyelinating syndromes (monoADS). Results show that 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. 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.

Julia O’Mahony is pursuing her doctoral studies at IHPME in Health Services Research through the Health Economics stream. Julia completed a Honors Bachelor of Science with a specialization in Genetics prior to starting clinical research in the Multiple Sclerosis clinic at the Hospital for Sick Children.