MS-related Fatigue Strongly Affects Youngsters’ Functioning
Multiple sclerosis and its associated fatigue negatively affect school performance, mental health, and physical and social functioning in children and adolescents with the disease, according to a review study.
Pediatric-onset multiple sclerosis (POMS) also was associated with negative effects on social functioning, mental health, and quality of life in caregivers, who emphasized the need for psychological and social support, as well as additional MS information for families.
These findings add to previous studies highlighting a link between the pediatric form of MS and less formal education and lower income. They may help to bridge the gaps in existing policies and improve care not only for children and adolescents with MS, but also for their caregivers.
The review study, “Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review,” was published in the journal Children.
Up to 10% of people with MS experience their first symptoms in childhood, and about eight of 100,000 people around the world are estimated to live with POMS. Pediatric patients live with the disease during nervous system development and throughout their entire adult life, which can have a significant impact on their lives.
In addition, previous studies suggest that POMS also has a toll on caregivers of children and adolescents with MS, affecting psychological, social, and employment-related domains.
Despite POMS’ profound effects on patients and their caregivers, “gaps in policy frameworks have been widely reported in terms of addressing the needs of these groups and providing evidence-based care,” the researchers wrote.
“One of the major reasons for policy gaps is the lack of systematically synthesized evidence reporting the needs and experiences of [POMS patients] and their caregivers, thereby making it difficult for policy makers to take necessary steps to address these limitations,” they added.
To address this knowledge gap, researchers in Canada, Ireland, Belgium, Italy, and Croatia systematically reviewed published studies up to September 2020 regarding the experience and needs of children and adolescents with MS and their caregivers.
From the 10,122 studies accessed for eligibility, 26 — covering a total of 2,253 POMS patients and 1,608 caregivers — were included in the analysis. A total of 10 studies were conducted in Europe, eight in the U.S., six in Canada, and two in both Canada and the U.S.
Available demographic data indicated that most caregivers were the parents of POMS patients, particularly their mothers, and had a mean age of 42.2 years, while included pediatric patients had a mean age of 16.2.
Results showed that the pre-diagnosis and diagnosis phases were characterized by pronounced emotional distress, particularly on the caregivers’ side. This could be addressed by increasing POMS awareness among healthcare providers, by providing financial and psychological support to families, and by improving access to treatments.
The data also suggest that “additional information about the course of the disease is needed by caregivers,” the researchers wrote.
MS was found to negatively affect physical activity, daily functioning, school performance, social relationships, mental health, and quality of life of pediatric patients, with MS-related fatigue as the main contributor.
Based on these findings, the researchers noted that identifying ways to ease fatigue may help to improve these patients’ overall life and that additional educational, social, and psychological support should be provided to children and adolescents with MS.
Notably, a need for increased social support was identified in both POMS patients and their caregivers, whose social lives were reported to be greatly affected by the disease, in addition to their mental health and quality of life.
The team noted that organization of community support events by MS communities, as well as summer camps, may help promote coping strategies among both children and adolescents with MS and their caregivers.
“This study provides the first evidence regarding the needs and experiences of [POMS patients] and their caregivers,” the researchers wrote.
Importantly, the findings “resonated with the experiences of MS patient organizations, expert members, MS support groups, and patient research partners affiliated with the European Multiple Sclerosis Platform,” they added.
The study identified “specific needs in terms of psychological, social, educational, informational, and financial support which the policymakers and existing support systems can specifically use to bridge the gaps in existing policies and enhance the quality of care to both [POMS patients] and their caregivers,” the team wrote.
Still, the investigators noted that their review study did not consider important factors that may influence MS-related impacts in pediatric patients and caregivers, such as treatment cost, availability of health insurance, access to appropriate healthcare, type of MS, and extent of disease progression.