Enabling a survey of primary care to measure the health care experiences of adults with disabilities

Purpose. To enable an existing survey on primary care so that it can be used to assess the healthcare experiences reported by adults living with disabilities, and to evaluate its properties. Methods. Mixed-methods study. We first identified content areas for measurement as compared to the items in the existing instrument and then developed new candidate items. Cognitive testing was conducted in English and Spanish. After revisions to the primary care instrument based on the cognitive testing results, the draft-enabled instrument was field-tested by mail with telephone follow-up, in English and Spanish. Results. Consumer focus groups and a technical expert panel identified eight content areas in primary care that are particularly important to maximise function and well-being of people of with disabilities. Cognitive testing also revealed serious problems with several items in the existing survey when answered by or about people with disabilities. Field testing yielded 1086 surveys, of which 40% were completed by a proxy respondent. Learning disabilities were reported by 38% of respondents. Item non-response for revised and new questions was less than 4%. Conclusions. It is feasible to enable a survey of primary care and its administration. Survey administration instructions should be modified to accommodate proxy respondents. The screener item to identify people with mobility impairments on walking a distance should be replaced with walking for 6 min. Adding questions from the American Community Survey about functional ability will allow survey sponsors to identify respondents with various limitations, and to compare their experiences to those of people with no limitations. Careful development and testing of the items with input from interested parties throughout the design and testing stages yielded a survey with good psychometric properties and content validity in multiple languages. Health delivery systems can use the survey data to identify clinical processes needing improvement to provide high quality care for people with disabilities.