Research paper
Collaborative design of a health care experience survey for persons with disability

https://doi.org/10.1016/j.dhjo.2016.12.022Get rights and content

Abstract

Background

When assessing results of health care delivery system reforms targeting persons with disability, quality metrics must reflect the experiences and perspectives of this population.

Objective

For persons with disability and researchers to develop collaboratively a survey that addresses critical quality questions about a new Massachusetts health care program for persons with disability dually-eligible for Medicare and Medicaid.

Methods

Persons with significant physical disability or serious mental health diagnoses participated fully in all research activities, including co-directing the study, co-moderating focus groups, performing qualitative analyses, specifying survey topics, cognitive interviewing, and refining survey language. Several sources informed survey development, including key informant interviews, focus groups, and cognitive testing.

Results

We interviewed 18 key informants from key stakeholder groups, including disability advocates, health care providers, and governmental agencies. We conducted 12 total English- and Spanish-language focus groups involving 87 participants (38 with physical disability, 49 with mental health diagnoses). Although some details differed, focus group findings were similar across the two disability groups. Analyses by collaborators with disability identified 29 questions for persons with physical disability and 38 for persons with mental health diagnoses. After cognitive testing, the final survey includes questions on topics ranging from independent living principles to health care delivery system concerns.

Conclusions

The Persons with Disabilities Quality Survey (PDQ-S) captures specific quality concerns of Massachusetts residents with physical or mental health disability about an integrated health plan. PDQ-S requires further testing elsewhere to determine its value for quality assessment more generally and to other populations 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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