Clinical trial NCT02626910: Understanding Disparities in Healthcare and Primary Care Provider Quality
Official title: Patient Centered Outcomes Research Institute: Mrs. A and Mr. B
Study type: OBSERVATIONAL
Overall status: COMPLETED
Conditions: Physical Disability
Keywords: Disability
Activity of Daily Living
Patient Satisfaction
Lead sponsor: University of Pennsylvania
Sponsor class: OTHER
First posted: 2015-12-10
Enrollment: 49
Sex: ALL
Standard ages: CHILD
ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Observational model: COHORT
Time perspective: PROSPECTIVE
Sampling method: NON_PROBABILITY_SAMPLE
Study population: Both: both female and male participants are being studied

Brief summary: The project proposes to fill gaps in the understanding of disparities in healthcare and primary care provider (PCP) quality from the perspectives of adult Medicare beneficiaries with disabilities compared to those without disabilities. Studies document racial/ethnic, economic, and education-related disparities, but little is known about healthcare disparities related to disability.

Detailed description: BACKGROUND: The project proposes to fill gaps in the understanding of disparities in healthcare and primary care provider (PCP) quality from the perspectives of adult Medicare beneficiaries with disabilities compared to those without disabilities. Studies document racial/ethnic, economic, and education-related disparities, but little is known about healthcare disparities related to disability.

OBJECTIVE: 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.

Eligibility criteria: Inclusion Criteria:

* Second Life: People with disabilities - only those with disabilities from Second Life.
* Second Life: People without disabilities - only those without disabilities from Second Life.
* Second Life: clinicians - only clinicians from Second Life.
* Urban: either those with or without disabilities

Exclusion Criteria:

* Second Life: People with disabilities - does not include those without disabilities or clinicians from Second Life.
* Second Life: People without disabilities - does not include those with disabilities or clinicians from Second Life.
* Second Life: clinicians - does not include those with or without disabilities from Second Life.
* Urban: does not include clinicians

Primary outcomes:
measure: Satisfaction With Medical Care Survey
timeFrame: One year
Secondary outcomes:
Other outcomes:
Locations:
city: Philadelphia
country: United States
facility: University of Pennsylvania
state: Pennsylvania
Study officials:
affiliation: University of Pennsylvania
name: Hillary R Bogner, MD
role: PRINCIPAL_INVESTIGATOR
References:
citation: de Vries McClintock HF, Barg FK, Katz SP, Stineman MG, Krueger A, Colletti PM, Boellstorff T, Bogner HR. Health care experiences and perceptions among people with and without disabilities. Disabil Health J. 2016 Jan;9(1):74-82. doi: 10.1016/j.dhjo.2015.08.007. Epub 2015 Sep 5.
citation: Bogner HR, de Vries McClintock HF, Hennessy S, Kurichi JE, Streim JE, Xie D, Pezzin LE, Kwong PL, Stineman MG. Patient Satisfaction and Perceived Quality of Care Among Older Adults According to Activity Limitation Stages. Arch Phys Med Rehabil. 2015 Oct;96(10):1810-9. doi: 10.1016/j.apmr.2015.06.005. Epub 2015 Jun 26.