Understanding Factors in Decision Making for Children With Medical Complexity

Developing an Innovative Decision Support Tool for Pediatric Neuromuscular Scoliosis- Aim 1

The goal of this clinical trial is to compare different strategies to communicate around potential risks and benefits related to treatment decision making in parents/adult caregivers of children with medical complexity. The objective of this study is to identify the most effective ways to communicate decision-related risks and benefits to improve the quality of caregiver decision making for children with medical complexity.

Participants will view a video of a simulated clinic visit and related medical information and complete a survey about their experiences. Researchers will compare participant survey responses to see if decision quality changes based on the information reviewed by the participant.

Children with medical complexity, their caregivers, and their providers face a multitude of complex, high stakes medical decisions throughout their lifetime. Best practices for the provision of high quality shared decision making in the care of children with medical complexity do not exist. Unique challenges to support decision making for caregivers of children with medical complexity include communication of decision-related risks and benefits and knowledge related to the decision. This study will test the efficacy of various communication techniques in the setting of a simulated patient encounter.

Inclusion Criteria:

• Adult caregiver of a child with medical complexity
• English- or Spanish-speaking

Exclusion Criteria:

• Child is diagnosed with neuromuscular scoliosis but has not yet made a decision about whether to undergo spinal fusion.