Low Health-Related Quality Life in Parents of Children With MS Linked With Family Health Conditions, Low Socioeconomic Position

Julia O’Mahony, PhD

Data from a large prospective cohort study with repeated health-related quality of life (HRQoL) observations and long-term follow-up identified synergistic effects between the diagnosis of multiple sclerosis (MS) during childhood and the presence of family health conditions or low socioeconomic position (SEP) on parental HRQoL.¹

All told, parents who had a child with MS and either of these additional factors were at particularly high risk for low HRQoL. “In families of pediatric-onset MS patients, lower SEP and the presence of other health conditions within the family further aggravate the already negative impact on parental HRQoL," lead investigator Julia O’Mahony, PhD, postdoctoral researcher, Department of Internal Medicine, University of Manitoba, and colleagues, concluded. "As we consider optimal health management for children and youth living with MS, we must remember that MS lives within a family, and that caring for our pediatric MS patients requires supporting the entire family unit."

Poor parental HRQoL has been shown to be associated with poor outcomes in children facing chronic diseases, such as poor HRQoL, treatment adherene, and health. The prospective Canadian study featured parents of children with either MS (n = 65) or monophasic-acquired demyelinating syndromes (monoADS). The original inclusion criteria included children aged 16 years or younger within 90 days of their first clinical signs, but the study was modified after an additional phase of funding to include those aged under 18 years within 180 days of symptom onset.

Investigators observed patients at enrollment, 3, 6, and 12 months after symptom onset, and annually thereafter. Self-reported HRQoL of the child was ascertained using the PedsQL Inventory, while parental HRQoL was ascertained concurrently using the Family Impact Module. The study assessed HQROL of 1 parent per participant, not necessarily the same parent evaluated at each assessment.

With scores ranging from 0 (worst) to 100 (best), children with MS reported lower HRQoL than those with monoADS. Additionally, 17% of the MS cohort experienced relapses, of which 75% were treated with disease-modifying therapies. Between the 2 groups, parents of children with MS reported lower HRQoL, but neither group differed regarding the number of family health conditions or SEP.

Parents completed a median of 4 (IQR, 3-6) HRQoL assessments 5.11 (IQR, 3.09-7.24) years after the onset of their child’s symptoms. All told, the study findings showed that lower parental HRQoL was associated with having a child with MS, a health condition within the family, a child with a comorbidity plus MS or monoADS, a child with worse HRQoL, or a low SEP.

READ MORE: Presence of PIRA Following First Demyelinating Event Worsens Long-Term Outcomes in MS

These data, conducted through bivariate analyses, also showed much greater differences in median parental HRQoL between families of children with MS (17.29 points) than those with monoADS (5.41 points) regardless of comorbid family health condition. Notably, the difference in parental HRQoL between families with MS who had low vs high SEP was 9.79 points compared with a difference of 4.47 points among families of children with monoADS.

"Given the role of parental HRQoL in mediating the effect of the child’s MS diagnosis on the affected child’s HRQoL, pediatric care providers may need to focus more on optimizing parental HRQoL," O’Mahony et al wrote.¹ "Among women with a health condition attending pediatric primary care clinics for their child, most indicated that they would welcome screening and referrals for their own health by pediatric providers. Pediatric care providers have identified their own time, inadequate training, and legislation as current barriers to addressing parental health."

On multivariable analyses, the effect of having both MS and a family health condition on parental HRQoL was greater (–10.90) than would be expected by the sum of their individual effects (P <.001). Specifically, the individual effect of having MS on parental HRQoL was –5.37 while the individual effect of having a familial health condition was ­–3.28, suggesting a synergistic effect.

REFERENCE
1. O’Mahony J, Banwell B, Laporte A, et al. Family health conditions and parental occupational status modify the relationship between pediatric-onset multiple sclerosis and parent health-related quality of life. Mult Scler J. Published online January 19, 2023. doi:10.1177/13524585221144413