Linking Family Health to Health-Related Quality of Life for Parents of Children with Multiple Sclerosis

Linking Family Health to Health-Related Quality of Life for Parents of Children with Multiple Sclerosis

Researchers found that parents of children with MS who were either low in socioeconomic status (SEP) or had a history of family health problems were at increased risk for poor HRQoL. Their findings were published in the journal Multiple Sclerosis.
Low parental HRQoL is linked to worse health, treatment adherence, and QoL for kids who have chronic conditions. It is widely acknowledged that parental HRQoL mediates the HRQoL of children with MS. This study aimed to determine if parental health problems or socioeconomic status influenced the relationship between a child’s diagnosis of MS and their HRQoL.

In a prospective Canadian study, parents of children diagnosed with MS or the temporary illness known as monophasic-acquired demyelinating syndromes (monoaDS) participated. Using multivariable models, we analysed whether the correlation between a child’s MS (or monoaDS) diagnosis and parental HRQoL was moderated by the presence of other health problems in the family or a lack of socioeconomic status.

Between 2004 and 2018, 207 sets of parents and children participated in the study; 65 of the parents had MS and 142 of the children had monoaDS. MS paediatric patients were more likely to be female, older at symptom onset and initial HRQoL evaluation, have shorter hospitalisations at initial attacks, and be born outside of Canada when compared to children with monoaDS. Patients younger than 18 years old were included in the study if they presented symptoms within 180 days.

The participants were followed up on annually, as well as at 3, 6, and 12 months after the onset of symptoms. Child HRQoL was measured using the PedsQL Inventory, and parental HRQoL was measured using the Family Impact Module. The researchers polled 1 parent per kid to gauge their HRQoL, but it wasn’t always the same parent.

The majority of the children did not have any neurologic impairments at the time of the HRQoL evaluation. Young people with MS reported lower HRQoL than those with monoaDS, using a scale from 0 (worst health) to 100 (best health). The HRQoL study found that 17% of MS patients experienced relapses and 75% were treated with disease-modifying therapies.

After 5.11 (IQR 3.09-7.24) years since their child’s symptoms began, parents completed a median of 4 HRQoL assessments. Parents’ health-related quality of life (HRQoL) was reported to change very little over the course of the studies. In comparison to parents of children with monoaDS, those of children with MS reported lower HRQoL. There was no difference between the SEP and the number of family health conditions among children diagnosed with MS and those diagnosed with monoaDS.

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Parental HRQoL was negatively correlated with having a child with MS, a family history of a medical condition, a child with a comorbidity in addition to MS or monoaDS, a child with a poorer HRQoL, and a low socioeconomic status (SES).

when a child had MS

Further, when a child had MS, the gap between families with and without a comorbid family medical condition on the median parental HRQoL was significantly larger (17.29 points) than when the child had monoaDS (5.41 points). Similarly, families with a child diagnosed with MS had a larger HRQoL gap compared to those of families with children diagnosed with monoaDS (20.06 points vs 2.5 points, respectively). Differences in parental HRQoL between families with MS and low versus high SEP were 9.79 points, while differences between families with monoaDS and high SEP were 4.47 points.

Having both MS and a family health condition had a negative impact on parents’ HRQoL (-10.90) in multivariable analyses, significantly more so than would be expected from the sum of their individual effects (P .001). There was a -3.28 point difference between the individual impact of having MS without a family health condition and the -5.37 point impact of having a family health condition without MS. Parental HRQoL was negatively impacted by both an MS diagnosis and the presence of other health problems in the family or a low socioeconomic status.

There are a few things to note about the study’s limitations. Due to the study’s lack of a population sample, it’s possible that the results aren’t applicable to all households with MS-diagnosed children. Furthermore, the magnitude of the observed association may have been affected by the researchers’ failure to control for the type, severity, or number of preexisting family medical conditions.

Lower socioeconomic status (SES) and the presence of other health conditions within the family “further exacerbate the already negative impact on parental HRQoL” in families of pediatric-onset MS patients, according to the researchers. They came to this conclusion: “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 paediatric MS patients requires supporting the entire family unit.”

Some of the authors of the study have disclosed financial ties to the biotechnology, pharmaceutical, and/or medical device industries. For a complete list of authors’ disclosures, consult the cited article.

Daniel Harrison
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