Description of YESHealth: A consumer-directed intervention in a randomized trial of methods to improve quality of care for persons with disability.

BACKGROUND: Persons leading their own evaluations of care quality offers the promise of generating maximally meaningful information to ensure person-centered care. OBJECTIVES: To describe an intervention where persons with disability engage other persons with disability, develop their own metrics to assess their care, and provide these care evaluations directly to primary care practitioners, with the goal of improving care. The context was a research study involving One Care, a Massachusetts demonstration program with capitated reimbursement for individuals ages 18-64 dually eligible for Medicare and Medicaid. METHODS: Individuals with serious mental illness or significant physical disability designed and implemented "YESHealth: Your Experience, Speak up for better health care." To solicit and communicate with YESHealth members, they mailed postcards announcing YESHealth to potential participants, created a website, sponsored a Facebook group, and staffed telephones in English and Spanish. YESHealth also involved reaching out to numerous disability advocacy organizations, developing and conducting short quarterly surveys about quality concerns they identified, and reporting survey results to YESHealth members and their primary care practitioners. RESULTS: Over 12 months, YESHealth staff visited 60 community organizations to recruit participants. Recruiting participants was challenging and ultimately required offering monetary compensation. Participants preferred telephone to online communication. Efforts to engage targeted primary care practitioners had very limited success. CONCLUSIONS: Despite these challenges, YESHealth represents a unique model for consumers' voices to try to affect change in care delivery. A randomized trial has evaluated whether the YESHealth intervention affected care quality for One Care members with disability.

Health plan enrollees with disability informing primary care practices and providers about their quality of care: A randomized trial.

BACKGROUND: In October 2013, Massachusetts initiated the One Care demonstration, which enrolls beneficiaries ages 21 to 64 dually-eligible for Medicare and Medicaid. Local disability advocates argued that persons with disability should assess their own One Care quality. OBJECTIVES: To test the comparative effectiveness for improving patient-reported health care experiences of two informational interventions in a 12-month period: (1) "YESHealth: Your Experience, Speak up for better health care," in which disability advocates developed brief topical surveys and gathered information from One Care enrollees with significant physical disability or serious mental illness; and (2) the Persons with Disability Quality Survey (PDQ-S), developed collaboratively with persons with disability. METHODS: This cluster randomized controlled trial randomly assigned 27 primary care practices with ≥50 One Care members to three study arms differing by information provided to practice directors and primary care providers (PCPs): (1) quarterly YESHealth reports plus results from baseline administration of PDQ-S to 720 enrollees before YESHealth implementation; (2) PDQ-S results only; and (3) no study information. We administered PDQ-S again one year later and used difference-in-differences analyses of results across the two years to assess intervention outcomes. RESULTS: Disability advocates conducting YESHealth reported substantial difficulties contacting practices and engaging PCPs. With few exceptions, no differences were found across the three study arms in enrollee-reported outcomes. CONCLUSIONS: Providing consumer-designed and generated quality information to PCPs had no measurable effect on enrollees' perceptions of One Care quality. Barriers to PCPs engaging with disability advocates could have contributed to YESHealth's failure to improve care.

Do prominent quality measurement surveys capture the concerns of persons with disability?

BACKGROUND: Demonstration programs nationwide aim to control costs and improve care for people dually-eligible for Medicare and Medicaid, including many persons with disability. Ensuring these initiatives maintain or improve care quality requires comprehensive evaluation of quality of care. OBJECTIVES: To examine whether the common quality measures being used to evaluate the Massachusetts One Care duals demonstration program comprehensively address the concerns of persons with disability. METHODS: Drawing upon existing conceptual frameworks, we developed a model of interrelationships of personal, health care, and environmental factors for achieving wellness for persons with disability. Based on this model, we specified a scheme to code individual quality measurement items and coded the items contained in 12 measures being used to assess Massachusetts One Care, which exclusively enrolls non-elderly adults with disability. RESULTS: Across these 12 measures, we assigned 376 codes to 302 items; some items received two codes. Taken together, the 12 measures contain items addressing most factors in our conceptual model that affect health care quality for persons with disability, including long-term services and supports. Some important gaps exist. No items examine sexual or reproductive health care, peer support, housing security, disability stigmatization, and specific services obtained outside the home like adult day care. Certain key concepts are covered only by a single or several of the 12 quality measures. CONCLUSIONS: Common quality metrics cover most - although not all-health care quality concerns of persons with disability. However, multiple different quality measures are required for this comprehensive coverage, raising questions about respondent burden.

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

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.

Toward interaction of affective and cognitive contributors to creativity in bipolar disorders: a controlled study.

BACKGROUND: Enhanced creativity in bipolar disorder patients may be related to affective and cognitive phenomena. METHODS: 32 bipolar disorder patients (BP), 21 unipolar major depressive disorder patients (MDD), 22 creative controls (CC), and 42 healthy controls (HC) (all euthymic) completed the Revised Neuroticism Extraversion Openness Personality Inventory (NEO), the Temperament Evaluation of Memphis, Pisa, Paris, and San Diego Autoquestionnaire (TEMPS-A), the Myers-Briggs Type Inventory (MBTI); the Barron-Welsh Art Scale (BWAS), the Adjective Check List Creative Personality Scale, and the Figural and Verbal Torrance Tests of Creative Thinking. Mean scores were compared across groups, and relationships between temperament/personality and creativity were assessed with bivariate correlation and hierarchical multiple linear regression. RESULTS: BP and CC (but not MDD) compared to HC had higher BWAS-Total (46% and 42% higher, respectively, p<0.05) and BWAS-Dislike (83% and 93% higher, p<0.02) scores, and higher MBTI-Intuition preference type rates (78% vs. 50% and 96% vs. 50%, p<0.05). BP, MDD, and CC, compared to HC, had increased TEMPS-A-Cyclothymia scores (666%, 451% and 434% higher, respectively, p<0.0001), and NEO-Neuroticism scores (60%, 57% and 51% higher, p<0.0001). NEO-Neuroticism and TEMPS-A Cyclothymia correlated with BWAS-Dislike (and BWAS-Total), while MBTI-Intuition continuous scores and NEO-Openness correlated with BWAS-Like (and BWAS-Total). LIMITATIONS: Relatively small sample size. CONCLUSIONS: We replicate the role of cyclothymic and related temperaments in creativity, as well as that of intuitive processes. Further studies are needed to clarify relationships between creativity and affective and cognitive processes in bipolar disorder patients.