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Persons With Disabilities Generating Quality Metrics

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Read our disclaimer for details. Identifier: NCT02390557
Recruitment Status : Completed
First Posted : March 17, 2015
Results First Posted : November 21, 2018
Last Update Posted : November 21, 2018
Patient-Centered Outcomes Research Institute
Information provided by (Responsible Party):
Lisa Iezzoni, Massachusetts General Hospital

Brief Summary:
No standard way exists to measure the quality of medical care or independent living long-term services and supports provided to persons with disabilities. This project will: provide a broader picture of how consumers with disabilities define care and care quality; measure the value of using consumers' expertise in developing, collecting, and assessing quality measures; and use this information to assist One Care providers in improving care delivered to their enrollees

Condition or disease Intervention/treatment Phase
Physical Disability Chronic Mental Disorder Other: Survey Other: YESHealth Not Applicable

Detailed Description:

The aims of the project are as follows:

  1. To work with persons with significant physical disabilities and serious and persistent mental illness to develop two new approaches to assess quality of care:

    Approach #1: We will survey enrollees about their experiences in One Care and their thoughts about the care they receive. This survey will also ask One Care enrollees about how they manage their care and what self-direction means to them. The survey will be called the Persons with Disabilities Quality Survey (PDQ-S), and it will be available in English and Spanish versions.

    Approach #2: Enrollees in One Care will provide information about their perceptions of care quality to a trained team of persons with disabilities who will report the information to One Care care teams. The goal of the activity is to support quality improvement in One Care through hearing the consumer's voice. This is called YES Health - Your Experience: Speak up for better health care.

  2. We want to test how providing consumer informed and consumer directed quality information to One Care providers affects One Care quality.
  3. We want to improve the ability of One Care enrollees to manage their own health care and to recognize and report quality problems

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Study Type : Interventional  (Clinical Trial)
Actual Enrollment : 451 participants
Allocation: Randomized
Intervention Model: Parallel Assignment
Intervention Model Description: control v Survey v YESHealth
Masking: Double (Participant, Care Provider)
Masking Description: Randomization was performed at the level of primary care practice. Providers and patients were unaware of assignment to study arms
Primary Purpose: Health Services Research
Official Title: Persons With Disabilities Generating Quality Metrics to Inform Integrated Care
Actual Study Start Date : July 1, 2015
Actual Primary Completion Date : October 7, 2016
Actual Study Completion Date : October 7, 2016

Resource links provided by the National Library of Medicine

MedlinePlus related topics: Disabilities

Arm Intervention/treatment
No Intervention: Control - Standard Practice
Standard measures of quality at baseline. No intervention reports sent to providers
Experimental: Survey
Persons with Disabilities Quality Survey.PDQS Survey Reports Intervention.reports sent to providers of OneCare enrollees
Other: Survey
PDQS survey reports only

Experimental: YESHealth
Arm 3: YESHealth Reports and PDQS Survey Reports sent to providers of OneCare enrollees
Other: Survey
PDQS survey reports only

Other: YESHealth
Arm 3: YESHealth and PDQS survey reports to providers

Primary Outcome Measures :
  1. Improved Quality of Care [ Time Frame: 12 months ]
    % who agree that their quality of care Is better, the same or worse than before

Information from the National Library of Medicine

Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the contacts provided below. For general information, Learn About Clinical Studies.

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Ages Eligible for Study:   21 Years to 64 Years   (Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   No

Inclusion Criteria:

  • One Care enrollee
  • Permanent physical disability and/or serious mental illness
  • Seen at designated practice site
  • English or Spanish speaking

Exclusion Criteria:

  • Persons with an intellectual or a developmental disability

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT02390557

Sponsors and Collaborators
Massachusetts General Hospital
Patient-Centered Outcomes Research Institute
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Principal Investigator: Lisa I Iezzoni, MD, MSc Mongan Institute Health Policy Center, Massachusetts General Hospital

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Responsible Party: Lisa Iezzoni, Principal Investigator, Massachusetts General Hospital Identifier: NCT02390557    
Other Study ID Numbers: 2014000899
First Posted: March 17, 2015    Key Record Dates
Results First Posted: November 21, 2018
Last Update Posted: November 21, 2018
Last Verified: April 2018
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No
Additional relevant MeSH terms:
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Mental Disorders
Anti-Infective Agents
Anti-Bacterial Agents
Antiprotozoal Agents
Antiparasitic Agents