Needs and Experiences of Children and Adolescents with Pediatric Multiple Sclerosis and Their Caregivers: A Systematic Review, 2021, Ghai et al

Abstract
In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was conducted using the mixed method appraisal test for individual studies, and GRADE-CERQual to establish overall confidence of findings. Results were analyzed using a process of narrative synthesis. We identified 26 studies which included 2253 children/adolescents with MS (CAMS) and 1608 caregivers.

MS was reported to negatively impact experiences for CAMS in domains such as of school performance, social relationships, mental health, and overall physical functioning. Specifically, fatigue and social support were reported as the most important barriers and facilitators for CAMS, respectively. In terms of caregiver experience, negative impacts were reported on social functioning, mental health, and quality of life.

Additionally, lack of awareness concerning MS was one of the biggest challenges reported. Caregivers expressed needs for psychological and social support. This study provides the first evidence regarding the needs and experiences of CAMS and their caregivers. Findings can be used to address policy gaps for supporting families affected by pediatric MS.


Article about the study:
MS-related Fatigue Strongly Affects Youngsters’ Functioning
"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."

"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."

 

I have only read the article, but I thought it and the associated paper were interesting because:

• I had no idea that MS onset in childhood was not uncommon - anyone with a child with ME/CFS symptoms needs to ensure that MS is carefully ruled out
• It's interesting how fatigue is again identified as one of the most significant ways that MS affects people
• The paper may have some ideas relevant to improving the lives of young people with ME/CFS and their caregivers