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BACKGROUND/RATIONALE:
Previous researchers have noted that Parkinson's disease (PD) is the second most common neurodegenerative disease affecting older persons in the United States and that the costs for people with PD have been reported to be twice as high as for non-PD control subjects matched for age, urban/rural living setting, and comorbid conditions. Between FY 1997 - 1999, VA treated over 63,000 patients with any PD diagnosis. These patients have significant levels of impairment and service utilization. In keeping with the high priority it places on quality of care, VA established comprehensive, focused organizations to provide specialized services for patients with PD. These six Parkinson's Disease Research, Education and Clinical Centers (PADRECCs) are similar in intent to previously established specialized centers for geriatrics (Geriatric Research, Education, and Clinical Centers, GRECCs), and mental illness (Mental Illness Research, Education, and Clinical Centers, MIRECCs) The primary goals of the six new PADRECCs are to provide state-of-the art care to patients with PD, to both conduct and stimulate research, and through education and by other means to disseminate the latest knowledge about PD and its treatment.
OBJECTIVE(S):
The five-year, multi-method, quasi-experimental study is examining the extent to which PADRECCs affect utilization, processes and outcomes of clinical care, research, education and the diffusion of state of the art knowledge about PD. The study is also investigating whether the "mini-network" PADRECC organization, being implemented in the Southwest PADRECC and the formal collaboration between two medical centers, being implemented in the Northwest PADRECC, differ from the other PADRECCs in processes and/or outcomes. The research builds on previous work in areas including organizational theory, structural contingency theory, network theory, management of chronic illness, measurement of patient outcomes, and information dissemination.
METHODS:
The study sites are the six VA PADRECCs, six similar-sized comparison sites and sites in their referral networks. Patterns of utilization are being analyzed from VA administrative databases and merged VA-CMS databases, with the latter occurring as these databases become available. Two waves of interviews with PADRECC and comparison-site staff are being conducted by telephone. Two waves of mailed surveys assessing patients' and informal caregivers' health status, perceptions of care and education received and satisfaction with care are being administered. Another wave of telephone interviews will be conducted in 2008. Mailed surveys to patients and informal caregivers were administered in 2005-2006 and a second wave will be administered in 2008. Archival materials are reviewed annually.
FINDINGS/RESULTS:
In the first round of telephone interviews, we obtained data from 102 people associated with the PADRECCs, ranging from VAMC directors and other senior leaders, PADRECC senior, clinical, research, education and advisory committee members. We obtained survey responses from 2567 patients and 861 matched caregiver surveys
The data reflect a patient population with chronic complex health needs who receive support from caregivers who themselves live with medical and emotional strain. Both groups reported satisfaction with care and a sense that care was relatively well organized. Unmet needs included involvement in treatment planning, care coordination, and discussion of self management and home care needs. Very few were encouraged to seek education or support services.
Reanalysis of the psychometric properties of the Patients' Assessment of Chronic Illness Care (PACIC) instrument, developed as part of RAND's Improving Chronic Illness Care initiative, has revealed new scales that may be more applicable to the PD population. The PACIC has been used with other diseases such as diabetes and CHF, and it may be that the needs for PD patients are different than those of other conditions
IMPACT:
From this study of PADRECCs we expect not only to determine factors associated with effective and ineffective outcomes, but also to be able to generalize the findings to organization of care for other diseases, providing managers and policymakers with information for establishing similar centers for other diseases. We have two conference presentations from the study and several papers in development.
Publications/Presentations:
Cramer, I.E., Charns, M.P., Hendricks, A., Holloway, R., Bruner-Canhoto, L. (2006) Multi-Method Evaluation of VA's Efforts to Improve Care for Parkinson's Disease. Poster presented at World Parkinson Congress. Washington, D.C.
Cramer, I.E., Meterko, M., Hendricks, A., Holloway, R., Lin, R., Seibert, M.N., Gardner, J., Charns, M.P. (2008) VHA Patient and Caregiver Perspectives about the Quality of Life and Satisfaction with Care for Parkinson's Disease. Poster presented at HSR&D National Meeting 2008, Baltimore, MD.
Meterko, M., Cramer, I.E., Hendricks, A., Holloway, R., Lin, R., Seibert, M.N., Gardner, J., Charns, M.P. (2008) Measuring perceptions of the quality of care among Parkinson's disease patients in the VA. Poster presented at AcademyHealth 2008, Washington, D.C.
PUBLICATIONS:
None at this time.
DRA:
Health Services and Systems
DRE:
none
Keywords:
Quality assessment
MeSH Terms:
none
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