Research paperCollaborative design of a health care experience survey for persons with disability
Section snippets
Health care delivery system and policy context
In August 2012, Massachusetts was the first state selected by CMMI's Financial Alignment demonstration's Massachusetts One Care is unique among CMMI's demonstrations in targeting fully dually eligible beneficiaries ages 21 through 64 (i.e., all persons have Medicare because of disability, and they all receive the full range of Medicaid benefits).23 For its fully-integrated care model, One Care chose dually capitated payment in which both Medicare and MassHealth (Massachusetts Medicaid)
Phase 1 methods
Phase 1 involved 30-min telephone or in-person key informant interviews27 with persons representing major One Care stakeholders. These interviews aimed to obtain participants' views about critical quality considerations confronting One Care, particularly for enrollees with SMI or SPD and relating to LTSS. To guide these interviews, we developed an 8-item, semi-structured, open-ended interview protocol (available upon request) based primarily upon DHA mission statement observations about
Phase 2 methods
Building upon key informant interview themes, we then sought to expand our list of potential PDQ-S domains and items by gathering feedback directly from persons with SMI or SPD themselves in focus groups. We designed a semi-structured focus group moderator's guide through an iterative process drawing upon topics raised by the key informants, suggestions from the inclusive project team, and quality assessment principles from DHA's Mission Statement. ROC and CAT members commented on the draft
Phase 3 methods
CMS and MassHealth have applied extensive batteries of quality measures to One Care plans, and we aimed to avoid duplicating these quality indicators. We created a complete inventory of all items contained in the CMS and MassHealth quality metrics10, 11, 12, 13, 14, 15, 16, 17, 18, 19, 20, 21 and looked for topics raised by key informants and focus group participants that were not addressed fully by those measures.22 We also reviewed other existing instruments for additional items applicable to
Phase 4 methods
Pretest interviews provide invaluable feedback that can significantly improve questionnaire flow, item wording, and present topics for further consideration among the research team prior to full-scale data collection. We tested the draft PDQ-S using cognitive interviewing techniques. The cognitive interviews used a semi-structured, open-ended protocol with eight debriefing questions (available upon request) in English and Spanish. Trained interviewers conducted the interview by telephone or
Discussion
Massachusetts disability advocates wanted to ensure that quality measurement for One Care – a new program for nonelderly adults dually eligible for Medicare and Medicaid – directly captured concerns of critical importance to its members with disability. The best way to achieve this goal was to participate fully in designing a patient experience survey. Only by being equal partners in this process did disability advocates feel their voices would be heard and represented in the final product. As
Funding
This work was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (IHS-1306-01424).
Disclaimer
All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.
Conflict of interest statement
The authors have no conflicts of interest to disclose.
Acknowledgments
We gratefully acknowledge John Winske, Colin Killick, Jacqueline Martinez, and Joseph Bettencourt from Disability Policy Consortium for their important contributions to the development and testing of the PDQ-S. We also thank Ellen Breslin for guiding the focus group analysis.
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Surveys and research
2023, Disability and Health JournalAccessibility of Medical Diagnostic Equipment for Patients With Disability: Observations From Physicians
2019, Archives of Physical Medicine and RehabilitationCitation Excerpt :Participants came from different practices, eliminating potential concerns about overreporting or clustered responses at the practice level. Drawing on literature reviews and our prior research,6,7,16,18,19 we designed an open-ended interview protocol (supplemental appendix S1, available online only at http://www.archives-pmr.org/) in modules addressing factors that might affect physicians’ care of persons with disability. Two modules were relevant for this report: physical environments of participants’ practices (eg, built structures and diagnostic equipment) and recommendations for improving care of persons with disability.
Health plan enrollees with disability informing primary care practices and providers about their quality of care: A randomized trial
2018, Disability and Health JournalCitation Excerpt :PDQ-S aims to assess One Care quality from the perspective of enrollees with serious mental illness or significant physical disability. As detailed elsewhere,14 in project Year 1, we developed PDQ-S domains using focus groups conducted in the community with collaborators from Mathematica Policy Research, MGH, and DPC. DPC staff with serious mental illness or significant physical disability played leading roles in extracting themes from the focus groups, suggesting potential questions based on those themes, and reviewing and refining drafts of the survey.
Description of YESHealth: A consumer-directed intervention in a randomized trial of methods to improve quality of care for persons with disability
2018, Disability and Health JournalCitation Excerpt :Because of this study design, YESHealth implementation occurred during 12 months but only within the 9 primary care practices randomly selected from 27 practices across Massachusetts with ≥50 One Care members with either SMI or SPD at the statewide One Care plan participating in our study.26 Describing fully the PCORI-funded project, which involved other measurement activities, is beyond our scope here.17,30 The major consequence of research design was that YESHealth participant recruitment was necessarily constrained to just the 9 practices.
Do prominent quality measurement surveys capture the concerns of persons with disability?
2017, Disability and Health JournalCitation Excerpt :The multiple measures also generate concerns about how to present the results from these 12 surveys in ways that will be meaningful to One Care enrollees. As CMS, NQF, and other groups continue to develop their quality measurement approaches, involving individuals with disability in quality metric design – and in devising presentations of results that are interpretable and usable by the public – could help ensure that quality measurement efforts address fully the concerns of persons with disability.11 This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Award (IHS-1306-01424).
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