Comparative effectiveness of a small in-person group and web-based survey to capture stakeholder priorities for future research in autism

Research Objective:

The long-term objectives of this study are to develop methods to capture stakeholder priorities for future research to inform patient-centered outcomes research and to determine priorities for future research in autism as an example.  This study examines the comparative effectiveness of best-worst scaling experiments fielded in a small panel compared to a large panel web-based approach.

Study Design: 

A survey instrument, developed with stakeholder input, captures priorities for future research by means of best-worst scaling experiments.  The survey was fielded in a small in-person panel (n=80 across 8 small groups) and in a large panel (n=700) of autism stakeholders including adults with autism, parents, providers and researchers. Descriptive statistics characterize the representativeness of the panels., Research needs were characterized in terms of attributes that describe how stakeholders value future research. Logit models generate estimates of the relative importance of these attributes, priorities for future research described by those attributes, and differences by stakeholder characteristics. Outcomes from the small and large panel approaches are compared.

Principal Findings: 

Preliminary findings indicate that top research priorities include evidence on integrated treatment approaches, behavioral interventions and treatment modifiers. Small panel group discussion focused on the importance of future research and shared personal stories, but did not lead participants to change survey answers when the opportunity was provided.

Conclusions:

Capturing broad stakeholder input into priorities for future research by means of web-based best-worst scaling experiments may be a cost effective way to promote a rigorous stakeholder-driven process for informed patient-centered outcomes research decision-making.