Over 40,000 Veterans across VHA are diagnosed with Parkinson's disease (PD), a chronic, debilitating neurodegenerative disease that produces more symptoms over time, affects motor abilities, and has a wide range of non-motor dysfunctions including sleep disorders, depression, and cognitive impairment that broadly impact physical, mental, and social dimensions of health-related quality of life. The ultimate goal of this proposed study is to test whether a nurse-led, coordinated care management intervention improves the quality of care and health status for veterans with PD, and to determine its cost and the feasibility of its implementation. Six Parkinson's Disease Research, Education, and Clinical Centers (PADRECC) were established a decade ago to provide subspecialty care within VA for PD and other movement disorders, but there are inadequate numbers of subspecialists to provide care to all veterans with PD. To address this problem, a series of investigations have been conducted following the VA Quality Enhancement Research Initiative (QUERI) process to 1) develop a comprehensive set of evidence-based indicators to measure the quality of PD care, 2) identify and document gaps in VA care relative to these indicators, and 3) analyze variations in PD care quality and factors associated with those variations. Based on this research, a delivery system redesign - with nurse care managers, using standardized assessment tools and care coordination protocols to address unmet needs of Veterans with PD, and collaborating with these Veterans and their families, providers, and community partners to manage PD care - is hypothesized to overcome identified barriers to the translation of evidence-based guidelines for PD care into general VA care delivery systems. In a nearly-completed pilot study funded by VA, a Task Force of stakeholders that includes nurses, physicians, other healthcare disciplines, and patient advocates was established;Task Force members were drawn from a network of VA facilities in VISN 22 (southern California and Nevada) that are affiliated with the PADRECC at the VA Greater Los Angeles Healthcare System, and from PD advocacy groups. The Task Force achieved consensus on a broad range of quality goals for benchmarking the quality of PD care in this VISN, goals that were selected based on the previously developed evidence-based quality indicators for PD care and on prior research documenting gaps in care. These targeted quality goals in turn guided the development, pilot-testing among veterans with PD, and subsequent refinement of a set of care management tools and detailed clinical protocols necessary for implementing the nurse-led, coordinated care intervention. In this proposed study, this new care model will be put in place at three VISN 22 VA facilities engaged in the pilot study and will involve clinical champions for PD care from the Task Force. Four hundred veterans with PD from those facilities will then be enrolled and randomized in a 1:1 ratio to either this new, coordinated care model or to usual care. Veterans will be assessed at baseline and at three follow-ups through 18 months. Primary study outcomes are adherence to the identified quality goals;secondary study outcomes will include health-related quality of life, perceptions of care quality, and self-efficacy. Veterans will be surveyed by telephone and medical records will be abstracted to measure these outcomes. A cost analysis will be conducted to summarize program costs to VA, and to examine whether there is a cost offset between randomization arms. A qualitative evaluation of the extent of implementation of the intervention, as well as barriers and facilitators to potential dissemination, will also be conducted. These data will provide new knowledge vital to future dissemination across VA of this intervention, if it is found to have benefit, leveraging existing collaborations among the National Consortium of Parkinson's Disease providers in VA. This study will also provide the opportunity and mentorship for a nurse researcher in VA to develop into an independent investigator, capable of leading future research to translate evidence into practice for PD and other chronic neurological diseases.
Parkinson's disease (PD) is a chronic progressive disorder of the brain, of unknown cause. It affects about 40,000 veterans. While many evidence-based treatments are of proven benefit for managing PD symptoms, there are large gaps in care. In a survey of veterans with PD, nearly half of those who needed a health care issue addressed in the prior 6 months said it was not. People with PD are frequently not asked by their healthcare providers about falls, depression, and other symptoms that are not as obvious as stiffness and tremor. Lack of recognition of these symptoms can lead to poorer health for these veterans and to higher healthcare costs to VA and society. This research study will provide new knowledge to VA administrators, veterans, and their healthcare providers about whether a nurse-led, coordinated care program that aims to prevent complications of PD and empower veterans to cope with this condition will result in better health and is feasible to continue and expand to the care of all veterans with PD.