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

Abstract

BackgroundDeciding on a disease modifying therapy (DMT) for the treatment of pediatric onset multiple sclerosis (POMS) often presents a challenge to families. Parents are often overwhelmed by DMT choices, but they desire to be an integral part of the decision making process for their child. There is no standard approach for how best to involve families in this process. The aim of this study was to describe the experience of decision making related to the use of disease modifying therapy in parents of children and adolescents with POMS. MethodsThe research aim was addressed using a descriptive survey design. Participants were recruited from the Pediatric MS and Related Disorders Program at Boston Children's Hospital as well as from the Pediatric Multiple Sclerosis Alliance online Facebook group. ResultsOverall, fewer than half of parents felt very satisfied with the DMT they chose for their child with POMS (44%). Parental satisfaction with the decision making process increased with a high level of control of the process (p < 0.0001), satisfaction with communication (p < 0.0001), and feeling supported by the healthcare provider (p < 0.0001). Practice implicationsHealthcare providers should recognize the importance of the role of the family in the decision making process and how this directly impacts health outcomes. An open discussion at the time of DMT education should involve identification of family values and preferences. The use of online decision support tools have a valuable role in determining family preferences. ConclusionThere is an opportunity of healthcare providers to foster shared decision making practices to improve satisfaction among parents of children and adolescents with POMS. Healthcare providers should work closely with families to identify and incorporate their personal preferences for their role in the decision making process. Future research should include the testing of decision support tools for decision making in POMS.