Health-Related Quality Life in Parents of Children With MS Tied to Family Health

Parents with a child with multiple sclerosis (MS) with either low socioeconomic position (SEP) or the presence of family health conditions were at particularly high risk for low health-related quality of life (HRQoL), according to study findings published in the Multiple Sclerosis Journal.

Poor parental HRQoL has been associated with poor outcomes in children with chronic conditions, such as poor HRQoL, treatment adherence, and health. The HRQoL of children with MS is known to be mediated by the HRQoL of their parents. Researchers sought to evaluate whether the link between a pediatric MS diagnosis and parental HRQoL is impacted by a family health condition or low SEP.

Parents of children with MS or the transient illness known as monophasic-acquired demyelinating syndromes (monoaDS) were enrolled in a prospective Canadian study. Multivariable models were utilized to explore whether the association between a child’s diagnosis of MS (or monoaDS) and parental HRQoL was altered by 1 or more family health condition(s) or low SEP.

A total of 207 parents and their children — 65 of whom had MS and 142 of whom had monoaDS — were enrolled in the study between 2004 and 2018. Compared with children with monoaDS, pediatric patients with MS were more likely to be female, to be older at both onset of symptoms and initial HRQoL evaluation, to have shorter hospitalizations at their initial attack, and to have been born outside of Canada. The study included patients aged younger than 18 years within 180 days of symptom onset.

Researchers observed patients at enrollment, 3, 6, and 12 months after symptom onset, and annually. Using the PedsQL Inventory, researchers obtained data of self-reported HRQoL of the child while the Family Impact Module was used to attain parental HRQoL. The researchers assessed HRQoL of 1 parent per child, but the same parent wasn’t always evaluated at each assessment.

At the time of HRQoL assessment, most of the children were not affected by neurologic impairments. Scores ranged from 0 (worst health) to 100 (best health), with children with MS reporting lower HRQoL than did those with monoaDS. During the time of HRQoL observation, 17% of those with MS experienced relapses of their disease, and 75% received treatment with disease-modifying therapies.

Parents completed a median of 4 HRQoL assessments at 5.11(Interquartile range [IQR], 3.09-7.24) years following onset of their child’s symptoms. A minimal change in parental HRQoL was reported across observations. The parents of children with MS reported lower HRQoL compared with the parents of children with monoaDS. No differences were observed in the number of family health conditions or the SEP in the families of children with MS vs those with monoaDS.

Per bivariate analyses, having a child with MS, a medical condition within the family, a child with a comorbidity along with MS or monoaDS, a child with worse HRQoL, or a low SEP were all associated with lower parental HRQoL.

Further, the difference in median parental HRQoL between families who did vs those who did not have a comorbid family medical condition was much greater when the child had MS (17.29 points) compared with when the child had monoaDS (5.41 points). Similarly, the difference in parental HRQoL between families in which the child did or did not have a comorbidity was greater when the child had MS than when the child had monoaDS (20.06 points vs 2.5 points, respectively). The difference in parental HRQoL between families with MS and a low SEP vs a high SEP was 9.79 points, compared with a difference of 4.47 points among families with monoaDS.

In 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). The individual effect of having MS without a family health condition was -3.28 while the individual effect of having a family health condition without MS was -5.37. Synergistic effects were observed between a MS diagnosis and the presence of family health conditions or a low SEP on parental HRQoL.

Several limitations of the study warrant mention. The findings may not be generalizable to all families of children with MS since this was not a population-based study. Additionally, since the researchers did not account for the type, severity, or number of preexisting familial medical conditions, this might have impacted the magnitude of the association observed.

“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,” the researchers noted. They 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.”

Disclosure: Some of the study authors have declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of authors’ disclosures.