FindTrial
Sign In

Persons With Disabilities Generating Quality Metrics

Persons With Disabilities Generating Quality Metrics to Inform Integrated Care

Status
Completed
Phases
NA
Study type
Interventional
Source
ClinicalTrials.gov
Registry ID
NCT02390557
Enrollment
451
Registered
2015-03-17
Start date
2015-07-01
Completion date
2016-10-07
Last updated
2018-11-21

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Chronic Mental Disorder, Physical Disability

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

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

Interventions

OTHERSurvey

PDQS survey reports only

OTHERYESHealth

Arm 3: YESHealth and PDQS survey reports to providers

Sponsors

Patient-Centered Outcomes Research Institute
CollaboratorOTHER
Massachusetts General Hospital
Lead SponsorOTHER

Study design

Allocation
RANDOMIZED
Intervention model
PARALLEL
Primary purpose
HEALTH_SERVICES_RESEARCH
Masking
DOUBLE (Subject, Caregiver)

Masking description

Randomization was performed at the level of primary care practice. Providers and patients were unaware of assignment to study arms

Intervention model description

control v Survey v YESHealth

Eligibility

Sex/Gender
ALL
Age
21 Years to 64 Years
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

Design outcomes

Primary

MeasureTime frameDescription
Improved Quality of Care12 months% who agree that their quality of care Is better, the same or worse than before

Participant flow

Recruitment details

The unit of randomization is the practice. In each wave, we selected survey participants who were patients in those practices. For wave 2 we report the cases from Wave 1 who completed the Wave 2 survey.

Participants by arm

ArmCount
Control - Standard Practice
Standard measures of quality as scheduled through One Care demonstration
160
Survey Arm
Consumer surveyed with Persons with Disabilities Quality Survey (PDQ-S) Results given to provider along with standard quality metric data as scheduled through One Care
156
YES Health
Initiative created by persons with disabilities for persons with disabilities to actively engage in collecting, analyzing and reporting on quality of care from the consumer perspective. The purpose is to engage eligible enrollees to answer brief surveys surrounding various themes about the care and experiences they receive through One Care. Subsequent brief, actionable reports are fed back to primary care provider practices randomized to this arm. YES Health: Intervention Arm
135
Total451

Withdrawals & dropouts

PeriodReasonFG000FG001FG002
Wave 2Survey non-respondent724123

Baseline characteristics

CharacteristicControl - Standard PracticeSurvey ArmYES HealthTotal
Age, Categorical
Wave 1
<=18 years
0 Participants0 Participants0 Participants0 Participants
Age, Categorical
Wave 1
>=65 years
0 Participants0 Participants0 Participants0 Participants
Age, Categorical
Wave 1
Between 18 and 65 years
160 Participants156 Participants135 Participants451 Participants
Age, Categorical
Wave 2
<=18 years
0 Participants0 Participants0 Participants0 Participants
Age, Categorical
Wave 2
>=65 years
0 Participants0 Participants0 Participants0 Participants
Age, Categorical
Wave 2
Between 18 and 65 years
88 Participants115 Participants112 Participants315 Participants
Disability Type
Wave 1
Severe Mental Illness
100 Participants92 Participants84 Participants276 Participants
Disability Type
Wave 1
Significant Physical Disability
60 Participants64 Participants51 Participants175 Participants
Disability Type
Wave 2
Severe Mental Illness
41 Participants75 Participants71 Participants187 Participants
Disability Type
Wave 2
Significant Physical Disability
47 Participants40 Participants41 Participants128 Participants
Race/Ethnicity, Customized
Wave 1
Black
9 Participants25 Participants25 Participants59 Participants
Race/Ethnicity, Customized
Wave 1
Hispanics
53 Participants53 Participants43 Participants149 Participants
Race/Ethnicity, Customized
Wave 1
Other
11 Participants15 Participants14 Participants40 Participants
Race/Ethnicity, Customized
Wave 1
White
87 Participants63 Participants53 Participants203 Participants
Race/Ethnicity, Customized
Wave 2
Black
14 Participants18 Participants18 Participants50 Participants
Race/Ethnicity, Customized
Wave 2
Hispanics
30 Participants39 Participants38 Participants107 Participants
Race/Ethnicity, Customized
Wave 2
Other
8 Participants11 Participants10 Participants29 Participants
Race/Ethnicity, Customized
Wave 2
White
36 Participants47 Participants46 Participants129 Participants
Sex: Female, Male
Wave 1
Female
92 Participants83 Participants73 Participants248 Participants
Sex: Female, Male
Wave 1
Male
68 Participants73 Participants62 Participants203 Participants
Sex: Female, Male
Wave 2
Female
46 Participants61 Participants61 Participants168 Participants
Sex: Female, Male
Wave 2
Male
42 Participants54 Participants51 Participants147 Participants

Adverse events

Event typeEG000
affected / at risk
EG001
affected / at risk
EG002
affected / at risk
deaths
Total, all-cause mortality
0 / 1600 / 1560 / 135
other
Total, other adverse events
0 / 1600 / 1560 / 135
serious
Total, serious adverse events
0 / 1600 / 1560 / 135

Outcome results

Primary

Improved Quality of Care

% who agree that their quality of care Is better, the same or worse than before

Time frame: 12 months

Population: 315 participants completing wave 1 and wave 2 surveys

ArmMeasureValue (COUNT_OF_PARTICIPANTS)
Control - Standard PracticeImproved Quality of Care45 Participants
Survey ArmImproved Quality of Care68 Participants
YES HealthImproved Quality of Care53 Participants
Comparison: we had a prior hypothesis that the survey intervention would be associated with a larger increase in perceived quality of health care compared with control from Wave 1 to Wave 2p-value: 0.074Chi-squared, Corrected
Comparison: We compared change in perception of quality of health care between Control v YES Health, wave 1 v Wave 2p-value: 0.069Chi-squared, Corrected

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026