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SDR 02-215 – HSR&D Study

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SDR 02-215
Evaluation of Parkinson's Disease Research, Education and Clinical Centers
Martin P Charns DBA
VA Boston Healthcare System Jamaica Plain Campus, Jamaica Plain, MA
Boston, MA
Funding Period: April 2004 - September 2010

BACKGROUND/RATIONALE:
Parkinson's disease (PD) is the second most common neurodegenerative disease affecting older persons in the United States. We evaluated VA's Parkinson's Disease Research, Education and Clinical Centers (PADRECCs), an effort to address this need

OBJECTIVE(S):
The study examined whether PADRECCs achieved their goals to provide high quality clinical care, conduct and stimulate research, and diffuse knowledge. We also investigated whether the differing PADRECC organizational models affected patient outcomes

METHODS:
Study sites included six PADRECCs and ten similar-sized comparison VA medical centers in their referral networks. Patterns of utilization were analyzed from VA administrative databases. We conducted two waves of telephone interviews with PADRECC staff, administered two waves of mailed surveys to patients and informal caregivers, and reviewed archival material.

FINDINGS/RESULTS:
We interviewed 120 PADRECC-associated individuals including leadership, providers, and researchers. We learned about methods used and challenges related to addressing organizational needs. Site approaches to providing care ranged from providing all-inclusive interdisciplinary care to providing neurological evaluations with referrals to other disciplines. Sites also developed different areas of expertise.

In wave one of the survey, 2330 patients and 830 matched caregivers responded. Three years later, in wave two, 2967 patients and 839 caregivers responded with 1095 patients and 277 caregivers included in both waves. The patients reported chronic complex health needs and received support from caregivers who also lived with medical and emotional strain. Patient assessment of satisfaction, adherence to care for chronic conditions, and education/support service use differed between PADRECC and comparison sites. Unmet needs included involvement in planning for treatment and self-management, care coordination, and education or support services.

Psychometric analyses of the Patients' Assessment of Chronic Illness Care (PACIC) and the Unified Parkinson's Disease Rating Scale (UPDRS) revealed new scales that may be more applicable to understanding health status and satisfaction with care for the PD population.

Analyses of VA's administrative data indicate increased PADRECC use but that patients with PD receive only a small amount of their care in PADRECCs. The majority of their medical care is provided by primary care providers. About 1/3 of PADRECC patients and 40% of patients seen elsewhere in VA for PD were not using VA care three years later.

IMPACT:
We provided feedback to the National Chief of Neurology, presented findings at meetings and prepared newsletter updates for the Consortium, published a paper, and presented findings at conferences.


PUBLICATIONS:

Journal Articles

  1. Pogoda TK, Cramer IE, Meterko M, Lin H, Hendricks A, Holloway RG, Charns MP. Patient and organizational factors related to education and support use by Veterans with Parkinson's disease. Movement Disorders : Official Journal of The Movement Disorder Society. 2009 Oct 15; 24(13):1916-24.
Center Products

  1. Cramer IE. Parkinson's Disease Research, Education and Clinical Centers and the National VA Parkinson's Disease Consortium, Department of Veterans Affairs. What Strategies do U.S. Hospitals Employ to Reduce Unwarranted Clinical Practice Variation. [Newsletter]. 2010 Aug 20; 7(3).
Conference Presentations

  1. Williams SA, Stolzman KL, Meterko MM, Hendricks AM, Nealon Seibert M, Pogoda TK, Holloway R, Ballah KG, Charns MP, Cramer IE. Evaluating the Impact of Parkinson’s Disease Research, Education, and Clinical Centers (PADRECCs): Preliminary Findings. Poster session presented at: VA HSR&D National Meeting; 2011 Feb 16; National Harbor, MD.
  2. Cramer IE. How Can I Provide Patient- and Family-Centered Care for Parkinson’s Disease and Other Chronic Conditions? Paper presented at: Massachusetts Association of Older Americans, Inc. / Massachusetts Department of Mental Health Annual Meeting; 2009 May 1; Worcester, MA.
  3. Cramer IE. Effects of Specialized Centers on Processes of Chronic Care Delivery for Patients with Parkinson’s Disease. Presented at: Massachusetts Association of Older Americans, Inc. / Massachusetts Department of Mental Health Annual Meeting; 2009 Feb 11; Boston, MA.
  4. Charns MP, Cramer IE, Meterko M, Stolzmann K, Pogoda T, Holloway RG, Lin H, Hendricks A. Effects of Specialized Centers on Processes of Chronic Care Delivery for Patients with Parkinson's Disease. Paper presented at: VA HSR&D National Meeting; 2009 Feb 1; Baltimore, MD.
  5. Pogoda TP, Cramer IE, Meterko M, Lin H, Hendricks A, Holloway RG, Gardner J, Seibert MN, Stolzmann K, Ballah K, Charns MP. Patient and Organizational Factors Related to Education and Support Use by Veterans with Parkinson's Disease. Poster session presented at: VA HSR&D National Meeting; 2009 Feb 1; Baltimore, MD.
  6. Charns MP, Cramer IE. Findings from HSR&D's Evaluation of Parkinson's Disease Research, Education and Clinical Centers: Patient and Caregiver Surveys (2006) and VA Administrative Data. Paper presented at: VA National Parkinson's Disease Consortium Annual Conference; 2008 Aug 5; Pittsburgh, PA.
  7. Cramer IE. Patient Centered Care for Parkinson's Disease. Paper presented at: Massachusetts Association of Older Americans, Inc. / Massachusetts Department of Mental Health Annual Meeting; 2008 Jan 1; Boston, MA.
  8. Cramer IE. Patient Centered Care Using the Chronic Care Model. Paper presented at: Massachusetts Association of Older Americans, Inc. / Massachusetts Department of Mental Health Annual Meeting; 2008 Jan 1; Worcester, MA.
  9. Cramer IE, Meterko M, Hendricks A, Holloway R, Lin R, Seibert MN, Gardner J, Charns MP. VHA Patient and Caregiver Perspectives About the Quality of Life and Satisfaction with Care for Parkinson's Disease. Poster session presented at: VA HSR&D National Meeting; 2008 Jan 1; Baltimore, MD.
  10. Meterko M, Cramer IE, Hendricks A, Holloway R, Lin R, Seibert MN, Gardner J, Charns MP. Measuring Perceptions of the Quality of Care Among Parkinson's Disease Patients in the VA. Poster session presented at: AcademyHealth Annual Research Meeting; 2008 Jan 1; Washington, DC.
  11. Cramer IE, Charns MP, Hendricks A, Holloway R, Bruner-Canhoto L. Multi-Method Evaluation VA's Efforts to Improve Care for Parkinson's Disease. Poster session presented at: World Parkinson Coalition Inc Annual Congress; 2006 Jan 1; Washington, DC.


DRA: Health Systems
DRE: none
Keywords: Quality assessment
MeSH Terms: none

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