Measuring health-related quality of life (HRQOL) is essential for understanding the impact of new therapies on outcomes most important to patients with chronic conditions. HRQOL is also the primary concern of efforts to improve the delivery of health care services to people with chronic diseases. Despite the need for such measures for application in Parkinson’s disease (PD) studies, there is a paucity of data on key measurement properties of existing measures, including their ability to detect change, or responsiveness, which is critical for their application in clinical trials. A second key measurement issue is whether to use a generic or a disease-targeted HRQOL measure in PD studies. Several studies have shown that epilepsy and multiple sclerosis disease-targeted HRQOL measures have better responsiveness and provide unique information not captured by the generic measure. There is also a paucity of information about the patterns of health care for veterans with PD. Critical information needs include assessment of unmet medical and information needs, access to care, utilization of services, types of providers, and treatment of comorbid conditions and preventive health care. Assessment of these issues and their relationships to disease stage and HRQOL can direct future quality of care intervention research.
1) To compare the reliability, validity, feasiblity, and responsiveness to change of one generic and three PD -targeted HRQOL measures.
2) A. To measure unmet medical and information needs, access to care and barriers to access, utilization of care, patient perceived quality of care/satisfaction, and HRQOL for a representative sample of veterans in care for PD across a set of VAs in the southwest US.
B. To relate unmet need, access, and patient-perceived quality to patient demographic variables (like education), social support, disease severity, region, and HRQOL.
C. To compare the HRQOL of this PD sample to that of an age- and gender-adjusted sample of the general US population.
We propose a set of analyses to compare several existing PD outcome measures. We will recruit several samples of patients. The first sample will include 100 patients with PD who are treated at the WLA VA. They will complete surveys containing three PD-targeted and one generic HRQOL measures, measures of disease severity, and sociodemographic characteristics, at baseline and one year later. These HRQOL measures will be compared on their responsiveness to change, reliability, feasibility, and construct validity. A different sample of patients will be identified to measure unmet medical and information needs, access to care and barriers to access, utilization of care, patient perceived quality of care and satisfaction with care, and health related quality of life for a representative sample of veterans with PD across four Veteran Administration Health Systems in the southwestern US. The goal is to enroll and interview 50 participants from each of four sites: Greater Los Angeles (GLA), Loma Linda, Long Beach, and Las Vegas, for a total of 200 subjects. Data will be collected by telephone interviews and analyzed using multivariate models.
Preliminary analyses is in progress for Objective 1.
The potential impact of this study is that it can identify those areas of care where there is "room for improvement," where change efforts are feasible, and that are likely to have important impacts on health outcomes like HRQOL. Such data will lay the framework for subsequent PD quality improvement intervention studies for delivering health care to persons with PD who experience barriers to accessing the health care services they need.
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Technology Development and Assessment
Parkinson's disease, Quality of life, Research measure