Life Quality of Children With MS Affected by Parents’ Distress: Study

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by Steve Bryson, PhD |

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The psychological distress of a parent whose child is found to have multiple sclerosis (MS) may directly impact the quality of life of the child.

That’s according to a new study that revealed a worse health-related quality of life (HRQoL) in MS children after their diagnosis.

These findings support the need to develop psychosocial interventions to help parents of children diagnosed with the neurodegenerative disease, which will ultimately improve their and their MS child’s quality of life, the researchers noted.

The study, “The health-related quality of life of children with multiple sclerosis is mediated by the health-related quality of life of their parents,” was published in the Multiple Sclerosis Journal.

Children diagnosed with MS have a reported lower health-related quality of life, known as HRQoL, when compared with healthy children, their siblings, and those who experience a similar condition called monophasic acquired demyelinating syndrome (monoADS).

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Both MS and monoADS are caused by inflammation and damage to the myelin sheath (demyelination), a coating that surrounds and protects nerve fibers. While MS is a chronic condition characterized by recurrent demyelinating events and ongoing symptomatic attacks, monoADS is marked by a single occurrence of demyelination.

However, the underlying reasons for a lower HRQoL in MS children are unclear, as most kids with the disorder have no apparent neurological impairments and appear similar to other healthy children.

Even in the absence of physical impairments or relapses among their children, parents of these patients reported a lower HRQoL for themselves. This suggests that a lower HRQoL in parents resulting from their child’s MS diagnosis may directly impact the quality of life of their MS children.

To investigate further, researchers based at the University of Manitoba, in Canada, now designed a study to evaluate whether the HRQoL of parents affects the relationship between an MS diagnosis and a lower health-related quality of life in MS children.

The study enrolled 65 MS and 142 monoADS patients and their parents. Overall, 30 patients — 14 of those with MS and 16 with monoADS — had functional neurological impairments, totaling 14% of the 207 participants.

HRQoL was assessed using the PedsQLTM Inventory and the PedsQLTM Family Impact Module. These tools measured self-reported HRQoL of the child, the parent, and the parent’s description of their family’s functioning.

Compared with the monoADS group, MS patients were more likely to be female, born outside Canada, and older at neurological onset and at the time of HRQoL assessment. MS participants also spent less time in the hospital at disease onset and had a shorter follow-up time. None of the participants were treated with anti-inflammatory corticosteroids within 30 days of the HRQoL assessments.

A simple statistical analysis revealed that children with MS reported a significantly lower HRQoL compared with those with monoADS. Parents of MS children also reported a lower HRQoL, as well as worse family functioning than parents of monoADS kids.

Further analyses showed a significant association between lower HRQoL of the MS child and a worse health-related quality of life of his or her parent. An MS diagnosis, reduced family function,  more co-existing medical conditions among both child and parents, and functional impairments also were linked with worse HRQoL in MS children. A worse HRQoL also was found among children and parents in families with lower socioeconomic status.

“The HRQoL scores among the comparator group (children with monoADS) were similar to those of published normative [groups],” the researchers noted.

A more complex statistical analysis then took into account factors such as sex, age at onset, length of hospital stay at onset, socioeconomic status, number of siblings, co-occurring diseases in the family, and the presence of functional neurological impairments.

Here, the results demonstrated that an MS diagnosis was associated with a lower HRQoL of the MS child and of their parents. But when MS diagnosis was included in the calculations, the results were different: the child’s HRQoL remained associated with the parent’s HRQoL, but the child’s HRQoL was no longer associated with the diagnosis of MS.

“We found that parental HRQoL mediated the relationship between the diagnosis of MS and the HRQoL of affected children,” the researchers wrote. “The diagnosis of MS (versus monoADS) related to lower HRQoL among parents, which in turn related to lower HRQoL among affected children.”

The team noted that their prior research has revealed a higher prevalence of mood and anxiety disorders among mothers of children with MS when compared with those whose children do not have the disease. Thus, they suggest that future studies should examine “parental health conditions, perceived parental uncertainty, and parental worry.”

“Identifying factors that affect the association between parent psychological distress and child HRQoL may provide insight into developing targets for psychosocial interventions,” they wrote, adding, “Our findings suggest that children with MS might report HRQoL scores similar to those of children with monoADS or even healthy children if their parents are able to attain sufficiently high HRQoL.”

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