Collaborative design of a health care experience survey for persons with disability.

BACKGROUND: When assessing results of health care delivery system reforms targeting persons with disability, quality metrics must reflect the experiences and perspectives of this population.

OBJECTIVE: For persons with disability and researchers to develop collaboratively a survey that addresses critical quality questions about a new Massachusetts health care program for persons with disability dually-eligible for Medicare and Medicaid.

METHODS: Persons with significant physical disability or serious mental health diagnoses participated fully in all research activities, including co-directing the study, co-moderating focus groups, performing qualitative analyses, specifying survey topics, cognitive interviewing, and refining survey language. Several sources informed survey development, including key informant interviews, focus groups, and cognitive testing.

RESULTS: We interviewed 18 key informants from key stakeholder groups, including disability advocates, health care providers, and governmental agencies. We conducted 12 total English- and Spanish-language focus groups involving 87 participants (38 with physical disability, 49 with mental health diagnoses). Although some details differed, focus group findings were similar across the two disability groups. Analyses by collaborators with disability identified 29 questions for persons with physical disability and 38 for persons with mental health diagnoses. After cognitive testing, the final survey includes questions on topics ranging from independent living principles to health care delivery system concerns.

CONCLUSIONS: The Persons with Disabilities Quality Survey (PDQ-S) captures specific quality concerns of Massachusetts residents with physical or mental health disability about an integrated health plan. PDQ-S requires further testing elsewhere to determine its value for quality assessment more generally and to other populations with disability.