Understanding Disparities in Healthcare and Primary Care Provider Quality

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

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.

Study Overview

• Status: Completed
• Conditions: Physical 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.

• Study Type: Observational
• Enrollment (Actual): 49

Contacts and Locations

Study Locations

• United States
  • Pennsylvania
    • Philadelphia, Pennsylvania, United States, 19104
      • University of Pennsylvania

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Both: both female and male participants are being studied

Description

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

Study Plan

How is the study designed?

Number of groups / cohorts

4

Cohorts and Interventions

Group / Cohort
Second Life: People with disabilities; People with disabilities recruited from the virtual world, Second life.
Second Life: People without disabilities; People without disabilities recruited from the virtual world, Second life.
Second Life: Clinicians; Clinicians recruited from the virtual world, Second life.
Urban group; People with and without disabilities recruited from an Urban setting.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Satisfaction With Medical Care Survey	Multinomial logistic regression models will be used to determine the degree to which people with disabilities and without have satisfaction with medical care obtained from the survey. The scale ranges from 1 (not satisfied) to 4 (very satisfied) with their medical care. Higher scores represent more satisfaction with medical care. Unit of measurement is units on a scale.	One year

Collaborators and Investigators

• Sponsor: University of Pennsylvania
• Investigators: Principal Investigator: Hillary R Bogner, MD, University of Pennsylvania

Publications and helpful links

General Publications

• 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.
• 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.

Study record dates

Study Major Dates

• Study Start (Actual): August 1, 2013
• Primary Completion (Actual): July 1, 2017
• Study Completion (Actual): July 1, 2017

Study Registration Dates

• First Submitted: November 30, 2015
• First Submitted That Met QC Criteria: December 7, 2015
• First Posted (Estimate): December 10, 2015

Study Record Updates

• Last Update Posted (Actual): December 15, 2017
• Last Update Submitted That Met QC Criteria: October 20, 2017
• Last Verified: October 1, 2017

More Information

Terms related to this study

• Keywords: Disability; Patient Satisfaction; Activity of Daily Living
• Other Study ID Numbers: AD-12-11-4567

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO