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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.
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| 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. |
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| 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 |
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Inclusion Criteria:
Exclusion Criteria:
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Both: both female and male participants are being studied
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| Name | Affiliation | Role |
|---|---|---|
| Hillary R Bogner, MD | University of Pennsylvania | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Pennsylvania | Philadelphia | Pennsylvania | 19104 | United States |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 26482010 | Result | 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. | |
| 26119464 | Result | 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. |
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| ID | Title | Description |
|---|---|---|
| FG000 | Second Life: People With Disabilities | People with disabilities recruited from the virtual world, Second life. |
| FG001 | Second Life: People Without Disabilities | People without disabilities recruited from the virtual world, Second life. |
| FG002 | Second Life: Clinicians | Clinicians recruited from the virtual world, Second life. |
| FG003 | Urban Group | People with and without disabilities recruited from an Urban setting. |
| Title | Milestones | Reasons Not Completed | ||||||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Overall Study |
|
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| ID | Title | Description |
|---|---|---|
| BG000 | Second Life: People With Disabilities | People with disabilities recruited from the virtual world, Second life. |
| BG001 | Second Life: People Without Disabilities | People without disabilities recruited from the virtual world, Second life. |
| Units | Counts |
|---|---|
| Participants |
|
| Title | Description | Population Description | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Denominator Units Selected | Denominators | Classes |
|---|---|---|---|---|---|---|---|---|---|
| Age, Categorical | Count of Participants |
| Type | Title | Description | Population Description | Reporting Status | Anticipated Posting Date | Parameter Type | Dispersion Type | Unit of Measure | Calculate Percentage | Time Frame | Units Analyzed | Denominator Units Selected | Arm/Group Information | Denominators | Classes | Analyses | ||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| Primary | 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. | Satisfaction with healthcare | Posted | Mean | Standard Deviation | units on a scale | One year |
|
1 year
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| ID | Title | Description | Deaths (Affected) | Deaths (At Risk) | Serious Events (Affected) | Serious Events (At Risk) | Other Events (Affected) | Other Events (At Risk) |
|---|---|---|---|---|---|---|---|---|
| EG000 | Second Life: People With Disabilities | People with disabilities recruited from the virtual world, Second life. |
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The qualitative nature of this study does not provide insight for causal inferences. Second, the small number of participants limits this study.
| Title | Organization | Phone | Extension | |
|---|---|---|---|---|
| Dr. Hillary R. Bogner | University of Pennsylvania | 215-746-4181 | Hillary.Bogner@uphs.upenn.edu |
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| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| ICF | No | No | Yes | Informed Consent Form: clinician | Apr 27, 2017 | Sep 20, 2017 | ICF_000.pdf |
| ICF | No | No | Yes | Informed Consent Form: PWD_SL | Apr 27, 2017 | Sep 20, 2017 | ICF_001.pdf |
| ICF | No | No | Yes | Informed Consent Form: PWD_URBAN | Apr 27, 2017 | Sep 20, 2017 | ICF_002.pdf |
| ICF | No | No | Yes | Informed Consent Form: PWOD_SL | Apr 27, 2017 | Sep 20, 2017 | ICF_003.pdf |
| ICF | No | No | Yes | Informed Consent Form: PWOD_URBAN | Apr 27, 2017 | Sep 20, 2017 | ICF_004.pdf |
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Apr 27, 2017 | Oct 19, 2017 | Prot_SAP_005.pdf |
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| ID | Term |
|---|---|
| D017060 | Patient Satisfaction |
| ID | Term |
|---|---|
| D000074822 | Treatment Adherence and Compliance |
| D015438 | Health Behavior |
| D001519 | Behavior |
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| BG002 | Second Life: Clinicians | Clinicians recruited from the virtual world, Second life. |
| BG003 | Urban Group | People with and without disabilities recruited from an Urban setting. |
| BG004 | Total | Total of all reporting groups |
| Participants |
|
| Age, Continuous | Mean | Standard Deviation | Years |
|
| Sex: Female, Male | Count of Participants | Participants |
|
| Ethnicity (NIH/OMB) | Count of Participants | Participants |
|
| Race (NIH/OMB) | Count of Participants | Participants |
|
| Region of Enrollment | Number | participants |
|
| Number of people analyzed in each focus group | Count of Participants | Participants |
|
People without disabilities recruited fro the virtual world Second Life
| OG002 | Second Life: Clinicians | Clinicians recruited from the virtual world Second life |
| OG003 | Urban | People with and without disabilities recruited from an Urban community |
|
|
| 0 |
| 23 |
| 0 |
| 23 |
| 0 |
| 23 |
| EG001 | Second Life:People Without Disabilities | People without disabilities recruited from the virtual world, Second life. | 0 | 10 | 0 | 10 | 0 | 10 |
| EG002 | Second Life: Clinicians | Clinicians recruited from the virtual world, Second life. | 0 | 6 | 0 | 6 | 0 | 6 |
| EG003 | Urban | People with and without disabilities recruited from an Urban community. | 0 | 10 | 0 | 10 | 0 | 10 |
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