OBJECTIVES: To identify caregivers’ outcome priorities that influence care management decisions for their child with comorbid intellectual and mental health conditions, and to assess preference heterogeneity through latent class analysis.

METHODS: The study was an online survey with participants recruited from community organizations and support groups across the US. Overall, 346 (95%) of 366 eligible individuals completed the survey. The survey included caregiver and child characteristics, the child’s treatment, and a Best-Worst Scaling (BWS) experiment of outcome preferences, with each 16 choice-task displaying six of 16 outcomes attributes. The BWS outcome domains were school functioning, social relations, future independence, and behavioral functioning. We conducted a latent class analysis using Latent Gold 5.1. Models were tested for 1-5 classes, selecting the model with the best AIC and BIC model fit statistics that generated theoretically interpretable classes.

RESULTS: The sample was primarily the child’s mother, on average aged 40 (±7), 67% white, 15% black, and 9% Hispanic, married, college-educated, employed full-time, and earned over $50,000 annual household income. Children were mostly male, on average aged 10 (±4), and publicly insured (59%). Autism (38%) and anxiety (52%) were the most common intellectual and mental health conditions, respectively. Children received psychotherapy (95%) and psychotropic medication (86%). A four-segment solution best fit the data. Class 1 (37%) was concerned with the child’s safety towards self and other children and the ability to manage healthcare decisions in the future. Class 2 (25%) was solely concerned with the child’s safe behavior. Class 3 (22%) preferred adult independence in living, working, and managing money. Class 4 (16%) preferred educational supports and the child not hurting him/herself.

CONCLUSIONS: The study findings show that caregivers prefer treatments that promote safety and independence. Knowledge of variability in outcomes priorities can inform treatment planning that best aligns with individuals’ preferences.