Improving quality of life assessments for high-need adult Medicaid service users with mental health conditions.

Purpose There is a lack of consensus on how to evaluate health and social service programs for people with mental health (MH) conditions. Having service users be the primary decision makers in selecting outcome measures can inform a meaningful evaluation strategy. We sought to identify the quality of life (QoL) survey preferences of high-need adult service users with MH conditions. Methods A systematic review identified generic, self-reported QoL surveys with evidence of validity in MH populations of interest. An advisory panel selected the most promising surveys to assess the success of programs like Medicaid for MH service users. Three groups of high-need, adult service users with MH conditions and one group of direct care staff ranked the surveys from the advisory panel, and generated and ranked characteristics that were desirable or undesirable in a QoL survey. Results Twenty-two surveys met the inclusion criteria. Of the six surveys selected by the advisory panel, groups of service users and direct care staff most preferred the Warwick-Edinburg Mental Well-being Scale (WEMWBS). The WEMWBS best embodied the features prioritized by the groups: to have a user-friendly format and positive focus, to be clearly worded and brief, and to avoid presumptive or unrealistic items. Service user groups appreciated survey topics most amenable to self-report, such as satisfaction with relationships. Conclusion Using QoL surveys that service users prefer can reduce the chance that deteriorating QoL is going unchecked, and increase the chance that decisions based on survey findings are meaningful to service users.