Addressing Health-Related Quality of Life Among Children With Multiple Sclerosis

Julia O'Mahony; Ruth Ann Marrie; Audrey Laporte; Adalsteinn Brown

doi:10.7224/1537-2073.2022-017

Addressing Health-Related Quality of Life Among Children With Multiple Sclerosis

Int J MS Care. 2023 Jan-Feb;25(1):35-42. doi: 10.7224/1537-2073.2022-017. Epub 2023 Jan 23.

Authors

Julia O'Mahony¹, Ruth Ann Marrie², Audrey Laporte³, Adalsteinn Brown⁴

Affiliations

¹ Department of Internal Medicine (JO'M), University of Manitoba, Winnipeg, MB, Canada.
² Departments of Medicine and Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences (RAM), University of Manitoba, Winnipeg, MB, Canada.
³ Institute of Health Policy, Management, and Evaluation (AL), University of Toronto, Toronto, ON, Canada.
⁴ Dalla Lana School of Public Health (AB), University of Toronto, Toronto, ON, Canada.

Abstract

Background: Children with the chronic disease multiple sclerosis (MS) report lower health-related quality of life (HRQOL) compared with children who experience transient illness. The relationship between an MS diagnosis and the HRQOL of affected children is mediated by parental HRQOL. Interventions to improve the HRQOL of children with MS should, therefore, include parents of affected children.

Methods: We performed a configurative review for improvements in the HRQOL of children facing diseases similar to MS and their parents. We used the generated concepts to form theories. Next, we performed qualitative interviews with clinicians who care for children with MS to characterize overlap between the proposed theories and usual care. Finally, we generated recommendations for improving the HRQOL of children with MS and their parents.

Results: We theorize that the HRQOL of children with MS and their parents may be improved by strengthening self-concept, hope, and knowledge. Qualitative interviews with 7 clinicians who care for children with MS revealed no common psychosocial care protocol. The interviews did, however, reveal sources of psychosocial care that overlap with the proposed theories and barriers to optimizing such care.

Conclusions: Grounded in theory and clinically oriented practice, recommendations to improve the HRQOL of children with MS and their parents are to implement standardized screening, pool provider counseling strategies, create computer applications with psychosocial interventions, promote age-appropriate education resources, and secure positions for MS specialists.

Keywords: demyelination; health-related quality of life; multiple sclerosis; pediatric.

Grants and funding

FUNDING/SUPPORT: Dr O’Mahony receives research funding from the Multiple Sclerosis Society of Canada, the Multiple Sclerosis Scientific Foundation, and the Consortium of Multiple Sclerosis Centers. Dr Marrie receives research funding from the Canadian Institutes of Health Research, Research Manitoba, the Multiple Sclerosis Society of Canada, the Multiple Sclerosis Scientific Foundation, Crohn’s and Colitis Canada, the National Multiple Sclerosis Society, the Consortium of Multiple Sclerosis Centers, the Arthritis Society, and the US Department of Defense; she is a coinvestigator on studies receiving funding from Biogen Idec and Roche Canada. This study was funded by the Multiple Sclerosis Scientific Research Foundation.