Parents of children with pediatric-onset multiple sclerosis (MS) report a lower overall quality of life than those whose kids have a condition marked by demyelination but is not a chronic disease, a study reports. The lifelong nature of MS makes all the difference, it said.
MonoADS, like MS, is caused by demyelination (the loss of the myelin sheet that protects nerve cells) in the brain and spinal cord. But a monophasic disorder is marked by a demyelination event, while MS is characterized by recurrent demyelinating events.
Researchers used the Pediatric Quality of Life Inventory, (PedsQL) a self-report questionnaire that assesses the quality of life of a child affected by a disease and that of their families. The health-related quality of life (HRQoL) of parents whose children experienced demyelination, of the children themselves, and of adult perceptions of how the disease affects their family were evaluated.
In total, 58 children with MS and 178 with monoADS from across Canada were included in the study; all were followed at given clinics or health facilities for at least five years and up to almost nine years.
HRQoL scores of children with MS in total did not differ from those with monoADS, nor did the groups differ in scores of physical and psychological well-being.
But HRQoL reported by parents of children with MS was significantly lower than that of parents whose children had monoADS, in terms of their physical, emotional, social and cognitive well-being. MS parents also reported greater worry, a poorer sense of communication, and lesser daily activities shared by the family or interaction among members.
Parental HRQoL was low even in families of MS patients who were doing well clinically.
“Our data suggest that it is the diagnosis of a chronic illness, not disease activity or severity that accounts for differences in HRQoL between parents of our MS and monoADS cohorts,” the researchers reported.
They suggested that “comprehensive care of pediatric MS patients should include psychological support for family members and should engage health care practitioners caring for parents.”