Patient Centered Outcomes Research Institute: Mrs. A and Mr. B

The investigators' goal is to engage stakeholders as peers and partners in the development of an evidence-based Patient-Inspired Surveillance Tool for documenting variations in healthcare and PCP quality and any outcome consequences associated with these variations among people with disabilities (PWD) and people without disabilities (PWOD). The tool is intended to provide guidance on programs and policies to ameliorate disparities, improve function, and enhance autonomy in populations of people.

METHODS: The investigators will explore perceptions about the determinants of healthcare and PCP quality in partnership with stakeholders including PWD, PWOD, family of PWD, and healthcare providers in efforts to better understand underlying determinants of healthcare disparities that might be accelerating clinical deterioration. Applying population weighted data and multi-variable methods to patient information included in the Medicare Current Beneficiary Survey (MCBS), the investigators will determine the presence or absence of perceived problems across 5 healthcare and PCP quality "comparators" and (if present) the magnitude of impact on likelihood of patients' functional improvement, functional decline, institutionalization, or death referenced to no status change by 1, 2, and 3 years. A decade of data from the MCBS (on about 40,000 working age and elderly patients) will be applied to ensure adequate statistical power for comparisons. Stakeholders will help interpret the implications of findings and partner with clinician researchers in building the Tool.

PATIENT OUTCOMES: For aim 2, the outcome will be healthcare and PCP quality across 5 "quality comparators" including patients' perceptions about care coordination and quality, access barriers, technical skills of PCP, interpersonal skills of PCP, and the quality of information provided by PCP. Comparisons will be cross sectional contrasting the proportions of people at each stage of disability referenced to PWOD perceiving lower verses higher quality on each comparator. These 5 comparators will become the exposure for aims 3 and 4.

For aims 3 and 4, the outcome will include "no change" (individual remains at the same Activity of Daily Living (ADL)/Instrumental Activity of Daily Living (IADL) stage), "functional improvement" (recovery to a lower ADL/IADL stage), "functional decline" (deterioration to a higher stage of ADL/IADL limitation), "institutionalization" (long-term nursing home), or "death." Comparison will be longitudinal prediction at 1, 2, and 3 years in contrast to no change according to each comparator.