Recently we sought to identify risk factors for hospitalization (emergency room visits or admissions) among Parkinson’s disease patients followed in our National Parkinson Foundation Parkinson’s Outcomes Project. The initiative was modeled after a similar effort put together by Gerry O’Connor at the Dartmouth Health Outcomes Center. O’Connor had a crazy but practical idea. He would collect one page of data once a year on all cystic fibrosis patients and use the data to benchmark how centers were doing. This procedure promoted best practices. Most leading scientists viewed this approach as a waste of time, energy and money. The registry, however, paid big dividends, and based on issues identified across the network of cystic fibrosis centers nationwide, the average age a cystic fibrosis patient now lives is 10 years longer (from approximately 28 to 38 years of age). We hired O’Connor to replicate the same program but to work with our experts to transform and grow the fundamental idea into the Parkinson’s disease field. Peter Schmidt, NPF’s Senior Vice President and Chief Mission Officer, was the architect of the quality data and led the transformation. He was then joined by Gene Nelson (also from Dartmouth) and a steering committee made up of leaders from several NPF Centers of Excellence. Using this dataset, we have become interested in identifying the key factors that may help us prevent Parkinson’s disease hospitalization.
The first cut of the data from the initiative yielded 3,060 patients, and shockingly, 1,016 (33%) had been hospitalized in the first year. Of those, 49% had a readmission in the second year. Those who were not hospitalized the first year of the study had a 25% risk of a new hospitalization in the second year.
The data from the initial study was assembled by Anhar Hassan, who is now on faculty at the Mayo Clinic in Rochester, Minnesota. The surprising wake-up call was that Parkinson’s disease patients had very high rates of hospitalization (ER visits or admissions) and that these hospitalizations were associated with advanced disease, more co-morbid conditions (e.g. hypertension, heart disease, lung issues, etc.), and a longer time to rise from a chair, walk 10 meters and return to the chair (referred to as a Timed Up and Go Test). Quality of life was worse for those hospitalized, and not surprisingly, there was a higher burden on the caregiver. Just as in O’Connor’s study of cystic fibrosis, some centers performed better than others, suggesting that there may be more optimal approaches to improve care and to prevent hospitalization.
Recently we began work on understanding the rate of hospital encounters over a five-year period. We aimed to create a profile for patients with and without frequent encounters and to identify any associated and potentially modifiable factors. Our fellow from Tehran, Leili Shahgholi Ghahfarkhi, examined 7,507 patients and presented the data at the 2015 American Academy of Neurology meeting in Washington, D.C. The rate of hospital encounters was 25.6%, 32.8%, 34.9%, 34.2% and 38.5% for years one through five, respectively. We learned that Parkinson’s disease patients had a high risk for hospitalization, and the risk increased slightly in subsequent years. Co-morbidities, disease stage, mobility, prior DBS, levodopa usage and caregiver strain were all identified as risk factors associated with hospitalization or re-hospitalization.
All of this data strongly suggest that as a field we should be working harder to prevent the first hospitalization. NPF is planning to launch initiatives to follow up the highly successful NPF Aware in Care hospital kit initiative. Prevention of hospitalization will likely be an important future goal for the Parkinson’s disease field and there are likely clues in the NPF data that will allow us to achieve this critical goal.
You can find out more about NPF's National Medical Director, Dr. Michael S. Okun, by also visiting the NPF Center of Excellence, University of Florida Health Center for Movement Disorders and Neurorestoration. Dr. Okun is also the author of the Amazon #1 Parkinson's Best Seller 10 Secrets to a Happier Life and 10 Breakthrough Therapies for Parkinson's Disease.