Best-Worst Scaling to Prioritize Outcomes Meaningful to Caregivers of Youth with Mental Health Multimorbidities: A Pilot Study

Objective Health care decision-making for youth with mental health multimorbidity is guided by outcomes that are considered most meaningful and important. The study objective was to pilot test a best-worst scaling (BWS) instrument designed to assess trade-offs among caregiver-defined, meaningful health care outcomes. Methods A BWS was designed with continuous stakeholder involvement to elicit caregiver-defined outcomes in 4 domains: school, behavioral, social, and independence. Four attributes were identified for each outcome domain, for a total of 16 attributes. Using a balanced incomplete block design, a BWS instrument was developed with 16 choice task questions displaying 6 attributes at a time. A convenience sample was selected from Maryland caregivers of children who were 21 years old or younger and had a developmental delay and a comorbid mental health condition. Participants completed a survey that included demographics and the BWS instrument. Conditional logit was used to estimate utility scores and 95% confidence intervals (CI) for each attribute, which were ranked in order of importance. Attribute statements were refined after a respondent debriefing session. Results A total of 38 caregivers participated in the pilot study. Child safety to self was the most important outcome (1.01, CI, 0.78-1.24). This was followed by securing support for an Individualized educational plan in school (0.77, CI, 0.54-1.01) and the child being able to stay in school all day (0.53, CI, 0.29-0.77). Conclusion BWS scenarios that resemble real-life decision-making can be a useful tool to identify preferences for health care outcomes.