Ron D. Hays

Development of the Quality of Life in Epilepsy Inventory

Summary: We developed an instrument to measure health‐related quality of life (HRQOL) in epilepsy. A 99‐item inventory was constructed from the RAND 36‐Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy‐targeted items, and 6 other items concerning attitudes toward epilepsy and self‐esteem. We administered the 99‐item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient‐designated proxies completed the inventory and were retested 1–91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbachs alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy‐targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient‐proxy correlations for all scales and correlations between neuropsychologic tests and self‐reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure‐free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy‐targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross‐sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy‐targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE‐89) inventory.

Use of CAHPS ® patient experience survey data as part of a patient-centered medical home quality improvement initiative

Objective To describe how practice leaders used Consumer Assessment of Healthcare Providers and Systems (CAHPS®) Clinician and Group (CG-CAHPS) data in transitioning toward a patient-centered medical home (PCMH). Study design Interviews conducted at 14 primary care practices within a large urban Federally Qualified Health Center in California. Participants Thirty-eight interviews were conducted with lead physicians (n=13), site clinic administrators (n=13), nurse supervisors (n=10), and executive leadership (n=2). Results Seven themes were identified on how practice leaders used CG-CAHPS data for PCMH transformation. CAHPS® was used: 1) for quality improvement (QI) and focusing changes for PCMH transformation; 2) to maintain focus on patient experience; 3) alongside other data; 4) for monitoring site-level trends and changes; 5) to identify, analyze, and monitor areas for improvement; 6) for provider-level performance monitoring and individual coaching within a transparent environment of accountability; and 7) for PCMH transformation, but changes to instrument length, reading level, and the wording of specific items were suggested. Conclusion Practice leaders used CG-CAHPS data to implement QI, develop a shared vision, and coach providers and staff on performance. They described how CAHPS® helped to improve the patient experience in the PCMH model, including access to routine and urgent care, wait times, provider spending enough time and listening carefully, and courteousness of staff. Regular reporting, reviewing, and discussing of patient-experience data alongside other clinical quality and productivity measures at multilevels of the organization was critical in maximizing the use of CAHPS® data as PCMH changes were made. In sum, this study found that a system-wide accountability and data-monitoring structure relying on a standardized and actionable patient-experience survey, such as CG-CAHPS, is key to supporting the continuous QI needed for moving beyond formal PCMH recognition to maximizing primary care medical home transformation.

Testing CAHPS Health Plan Performance Reports in the Florida Medicaid Program

Abstract : This report describes the findings from a demonstration conducted by RAND with the Florida Medicaid program to test applications of Consumer Assessment of Health Plans Study (CAHPS) consumer reports in the Medicaid sector. In collaboration with the Florida Agency for Health Care Administration (AHCA), we designed both paper and computer-based report formats, which were tested in field applications in Volusia County, Florida. This demonstration was the first of RANDs CAHPS demonstrations. Results of this work have been applied in subsequent demonstrations with the New Jersey and Iowa Medicaid programs.