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Shared Decision Making and Disease Modifying Therapy in Families of Children and Adolescents with Pediatric Onset

Lisa V Duffy1, Kiera Sarill2, Peter Forbes3

  • 1School of Nursing, Bouvé College of Health Sciences, Northeastern University, Boston, MA, United States of America; Department of Neurology, Boston Children's Hospital, Boston, MA, United States of America.

Journal of Pediatric Nursing
|October 16, 2021
PubMed

Insights

Parental satisfaction with disease-modifying therapy (DMT) decisions for pediatric multiple sclerosis (MS) improves when families have control and good communication. Shared decision-making is key for better outcomes in pediatric MS treatment.

Area of Science:

  • Pediatric Neurology
  • Clinical Decision Making
  • Patient-Centered Care

Background:

  • Pediatric onset multiple sclerosis (POMS) presents families with challenging treatment decisions regarding disease-modifying therapies (DMTs).
  • Parents desire active involvement in their child's DMT selection but lack standardized support.
  • This study explores parental experiences with decision-making for POMS DMTs.

Purpose of the Study:

  • To describe the decision-making experiences of parents whose children are undergoing treatment for POMS.
  • To identify factors influencing parental satisfaction with DMT choices in pediatric MS.

Main Methods:

  • A descriptive survey design was employed.
  • Participants were recruited from a specialized Pediatric MS program and an online support group for pediatric MS.

Main Results:

  • Only 44% of parents reported high satisfaction with their chosen DMT for POMS.
  • Parental satisfaction significantly increased with greater perceived control over the decision-making process (p < 0.0001).
  • Satisfaction was also positively correlated with effective communication and feeling supported by healthcare providers (p < 0.0001).

Conclusions:

  • Healthcare providers must prioritize family involvement in DMT decision-making for POMS to improve health outcomes.
  • Integrating family values and preferences through open discussions and decision support tools is crucial.
  • Fostering shared decision-making can enhance parental satisfaction and inform future research on decision support tools for POMS.
Abstract

Keywords:
Disease modifying therapyPOMSShared decision making

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