RESUMO
Among Veterans, it is estimated that 110,000 are living with Parkinson's disease (PD) in the United States. Whether or not Veterans living with PD are enrolled in the Veterans Health Administration (VHA), they may require special considerations when it comes to their care. We administered a survey to Parkinson's Foundation constituents with PD who had previously reported their Veteran status. Our goal was to identify areas where intervention can lead to improved health outcomes for Veterans living with Parkinson's disease. We specifically wanted to examine 1) the proportion of our Veteran constituents receiving services through the VHA, 2) the comprehensive care services that were utilized by Veterans living with PD, and 3) self-reported mental health and mobility status. We also wanted to compare those receiving care within and outside the VHA to see where there may be areas for improvement. With a response rate of 29.8% we received surveys from 409 United States Veterans with PD. As expected, mental health (MH) concerns in the previous 12 months were common with 36.0% of Veterans reporting concerns. Only 22.1% of respondents received care through VHA. Respondents with more falls and mental health concerns as well as those with higher levels of education and younger age were more likely to be seen at a VHA facility. In this sample, education level, household income, marital status, and VHA status were positively associated with increased health care utilization among Veterans. Those seen within the VHA were more likely to utilize MH and speech and language pathology consultation. This study highlights the importance of targeting educational outreach about care best practices for Veterans living with PD beyond VHA's current reach as well as the importance of access to good MH resources.
RESUMO
Symptomatic management of Parkinson's disease (PD) is complex and many symptoms, especially non-motor symptoms, are not effectively addressed with current medications. In the US, cannabis has become more widely available for medical and recreational use, permitting those in the PD community to try alternative means of symptom control. However, little is known about the attitudes towards, and experiences with, cannabis use among those living with PD. To address this shortcoming, we distributed an anonymous survey to 7,607 people with PD in January 2020 and received 1339 responses (17.6%). 1064 complete responses were available for analysis. Respondents represented 49 states with a mean age of 71.2 years (±8.3) and mean PD duration of 7.4 years (±6.2). About a quarter of respondents (24.5%) reported cannabis use within the previous six months. Age and gender were found to be predictors of cannabis use in this sample (Age OR = 0.95, 95% CI 0.93 to 0.97; Male OR = 1.44, 95% CI 1.03 to 2.03). Users reported learning about cannabis use from the internet/news (30.5%) and friends or other people with PD (26.0%). Cannabis users were more likely to report insufficient control of their non-motor symptoms with prescription medications than non-users (p = 0.03). Cannabis was primarily used for PD (63.6%) and was most often used to treat nonmotor symptoms of anxiety (45.5%), pain (44.0%), and sleep disorders (44.0%). However, nearly a quarter of users (23.0%) also reported they had stopped cannabis use in the previous six months, primarily due to a lack of symptom improvement (35.5%). Three quarters of respondents (75.5%) did not use cannabis, primarily because there was a lack of scientific evidence supporting efficacy (59.9%). Our results suggest that the lack of formal guidance or research evidence about cannabis for PD may in part underlie inconsistencies in both use and reported effectiveness.
RESUMO
The wide application of patient engagement and its associated benefits has increased across government, academic and pharmaceutical research. However, neither an identified standard practice for the process of engagement, nor utilization of common metrics to assess associated outcomes, exists. Parkinson's Foundation developed a patient engagement framework and metrics to assess engagement within the academic research and drug development sectors. This approach was developed over the course of several years through assessing the literature, acquiring feedback from researchers and people with Parkinson's disease and adapting practices to be relevant and generalizable across patient engagement projects. This framework includes the: 1) creation of a scope of work, 2) establishment of guiding principles, 3) selection and training of participants, 4) co-determination of project metrics, 5) execution of the project and 6) dissemination of project findings. Parkinson's Foundation has also worked with academic, government and pharmaceutical stakeholders to identify metrics that assess both the quality of patient engagement and outcomes associated with patient engagement on projects. By improving patient engagement project methodologies and metrics, global clinical trials can have access to evidence-based patient engagement practices to more efficiently capture the needs of, and potentially benefit, the patient community.
