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

Julia O'Mahony1, Ruth Ann Marrie2, Audrey Laporte3

  • 1Department of Internal Medicine (JO'M), University of Manitoba, Winnipeg, MB, Canada.

International Journal of MS Care
|January 30, 2023
PubMed

Insights

Improving health-related quality of life (HRQOL) for children with multiple sclerosis (MS) requires involving parents. Strengthening self-concept, hope, and knowledge can enhance HRQOL for both children and their parents.

Area of Science:

  • Pediatric Neurology
  • Quality of Life Research
  • Psychosocial Health

Background:

  • Children with multiple sclerosis (MS) experience lower health-related quality of life (HRQOL) compared to healthy peers.
  • Parental HRQOL significantly influences the HRQOL of children diagnosed with MS.
  • Interventions must address the needs of both children with MS and their parents.

Purpose of the Study:

  • To review existing interventions for improving HRQOL in children with MS-like conditions and their parents.
  • To develop theoretical frameworks for enhancing pediatric MS patient and family well-being.
  • To generate evidence-based recommendations for optimizing care.

Main Methods:

  • Configurative literature review on HRQOL interventions for pediatric chronic illnesses.
  • Qualitative interviews with 7 clinicians specializing in pediatric MS care.
  • Theory development and comparison with current clinical practices.

Main Results:

  • Theorized HRQOL improvements through enhanced self-concept, hope, and knowledge for pediatric MS patients and families.
  • Identified a lack of standardized psychosocial care protocols among clinicians.
  • Discovered overlapping psychosocial care strategies and barriers to care optimization.

Conclusions:

  • Recommendations include standardized screening and pooled provider counseling strategies.
  • Development of digital psychosocial interventions and age-appropriate educational resources is advised.
  • Establishing dedicated MS specialist roles is crucial for improving pediatric patient and family HRQOL.
Abstract

Keywords:
demyelinationhealth-related quality of lifemultiple sclerosispediatric

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