Depression, anxiety, memory loss, poor sleep, falls—these are everyday realities for most people with Parkinson's disease, many of whom would like to see more research dollars put toward addressing these problems. A cure would be nice, but improving daily quality of life is a more pressing priority, according to a survey of patients and caregivers commissioned by the nonprofit research and advocacy group Parkinson's UK and published last December in the journal BMJ Open.
In the survey, 1,000 participants—patients, caregivers, and physicians—helped narrow down a list of 94 research areas to 26 priorities, which were winnowed further into a "top 10" list. On that list were questions like how to improve balance and reduce fall risk, ease stress and anxiety, treat mild cognitive problems like memory loss and poor concentration, and enhance sleep quality.
Depression Dominates
Five years ago, the Parkinson's Foundation launched the Parkinson's Outcomes Project to monitor patient care at 20 participating certified "Centers of Excellence". To date, more than 7,700 people between the ages of 25 and 95 have been enrolled in the study.
"We've already learned many important things," says Michael S. Okun, MD, co-director of the University of Florida Health Center for Movement Disorders and Neurorestoration, national medical director for the NPF, and a Fellow of the American Academy of Neurology. "We're seeing that the largest unmet quality of life hurdle is depression. And we're not diagnosing and treating it enough."
Therapies that Help
Findings from the project show that exercising for more than two and a half hours per week can improve mobility and make daily tasks easier, while helping to relieve the burden on caregivers.
In addition, occupational therapy can help people with neurologic conditions live independently and avoid falls by offering special exercises and providing home safety assessments. Speech therapy can help prevent pneumonia by promoting good oral hygiene programs that keep bacteria from developing in the mouth and throat.
Investing in the Quality of Life
The Multiple Sclerosis Society" href="https://www.nationalmssociety.org/" target="_blank" rel="noopener">National Multiple Sclerosis (MS) Society recently made its own commitment to a large quality of life research initiative. "People with MS have told us that living well with their disease is a top priority," says Kathy Costello, the National MS Society's associate vice president for clinical care.
Costello estimates that the society has already invested approximately $24 million to support 78 research projects aimed at advancing wellness solutions for people with MS.
Pinpointing Problems
Similar to the Parkinson's project, research on quality of life issues in MS has revealed that exercise is important and depression is common. In fact, as many as half of all people with MS will experience clinical depression at some point—but, just like people with Parkinson's, their depression often goes undiagnosed and untreated.
Nicholas LaRocca, PhD, vice president of health care delivery and policy research for the National MS Society, says this will be an important focus of the wellness initiative. "We're convening a think tank to discuss how we can promote our understanding of depression in MS, and how to better identify and treat it."
