As many as 1 million Americans live with Parkinson's disease (PD), which is more than the combined number of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig's disease. Parkinson's is a progressive neurodegenerative movement disorder that includes nonmotor symptoms such as cognitive impairment, mood disorders, vision and dental problems, constipation, and fatigue. Little is known about the quality of care received by people with Parkinson's in Wyoming or about the outcomes that are effective and important to this population and their care partners.
Anecdotal evidence for one PD support group suggests that people with PD in Wyoming are not having their most pressing needs met. Because Wyoming is demographically very different from that of the majority of the United States, the needs of people with PD in this state may differ significantly from the rest of the population. For example, while falls prevention is very important to the PD community, it may be especially important in Wyoming where conditions such as extreme winter weather, the long distance many people must travel for medical care and the lack of movement disorder specialists may make falls particularly hazardous. Wyoming has the 10th largest area of all 50 states (97,813 square miles), along with the smallest population of any state (576,412 individuals, according to the 2012 census), resulting in the second least densely populated state (behind Alaska).
This results in Wyoming having a very underserved, loosely connected network of rural communities. This project will bring together the Wyoming PD community through the use of technology and a dedicated person who is supported to travel throughout the state in ways that would not otherwise have been possible. It will build the foundation to elucidate the patient-centered outcomes most important to the Wyoming community and the unique challenges in achieving these outcomes, eventually leading to a comparative effectiveness research question.