“It’s a shared decision-making model,” Okun says. “We look at ourselves as your cabinet members when we manage Parkinson’s and when we do DBS. I’m here to give you advice, to tell you what’s worked in other people to help you to formulate a plan. But I can’t go home with you or decide what’s right for you.”
In some cases, DBS might help with a symptom that doesn’t really bother the patient but would fail to fix the problem that most troubles him or her. “The risk-benefit ratio may not be in their favor,” Okun says. “We have to protect some people from surgery if we really think it’s not in their best interest.”
The University of Florida, along with 19 other centers of excellence in four countries, is participating in a National Parkinson Foundation research program, the Parkinson’s Outcomes Project. It tracks the care and outcomes of 10,000 patients seen at the centers. The goal is to find which medications and therapies work the best and for whom.
The project focuses on six domains: Hospitalization, caregiver strain, cognition, falls, mobility and patient-reported health status, including mental health, says Peter Schmidt, vice president of research programs at the National Parkinson Foundation. In addition to conducting prospective analyses, the program is beginning to analyze its data to identify areas where care could be improved.
For example, the project found that participating centers that participating centers have varying success using dopamine agonists, a class of drugs commonly used in Parkinson’s treatment. Dopamine agonists carry the potential side effect of impulse control problems that manifest in behaviors such as gambling, excessive shopping and pathological eating.
The study found that centers that use dopamine agonists the very least and the very most seem to have the worst outcomes, yet some of the best-performing centers use the drugs with relatively high frequency, Schmidt says. The aim now is to dive deeper to figure out just what the best centers are doing to get it right. This year, the centers began reporting dosing information to get at the answer.
“The top centers have figured out the trick,” Schmidt says. “We need to learn from them.” — Geri Aston is a contributing writer for H&HN. •
Based on his experience rolling out the ParkinsonNet model in Kaiser Permanente’s southern region, Todd Sachs, M.D., believes adopting a similar approach to care requires hospitals to embrace a certain set of values.
• Move away from reliance on the physician as the sole source of knowledge to a team-based process with multiple experts. ParkinsonNet care teams include a neurologist and physical, occupational, and speech and language therapists.
• Make sure you involve patients and caregivers in the team. “Instead of just being passengers, [patients are] co-pilots,” Sachs says. “It’s participatory medicine.” This philosophy is especially important for Parkinson’s disease because of the large number of motor and nonmotor symptoms, which vary widely from patient to patient and change over time.
• Step back from the traditional model of providing services at the hospital and in person. Move toward an approach that is better able to provide care where the patient wants it. For example, therapy sessions could be done via an Internet video connection.
• Implement an information technology platform that allows televisits and gives patients and their caregivers direct access to the care team. An important aspect of ParkinsonNet is its creation of online communities of patients, caregivers and providers that share information, ideas and experiences. The online portal also should provide patients with access to trusted information about their disease.
Guidelines for inpatient management of people with Parkinson’s disease are lacking. But recommendations are laid out in a literature review published in 2011. Among the suggestions are:
• Obtain early neurological consultation after patient admission.
• Get a list of both prescription Parkinson’s medication and over-the-counter medications that could affect cognition and motor symptoms.
• Pay as much attention to the dosing interval as to the actual doses of prescription and over-the-counter medications.
• Avoid dopamine-blocking drugs, including common antipsychotics and anti-nausea medications. Do not stop dopamine drugs abruptly.
• Mobilize the patient as much as possible to preserve motor function and to prevent aspiration pneumonia. Consider swallow therapy to minimize aspiration risk.
• Use fall prevention, bisphosphonates, vitamin D, physical therapy and assistive devices in patients at risk of falls. Set a low threshold for bone density scans in those at high risk of falling.
• Screen and treat patients for anxiety, depression and cognitive issues both medically and behaviorally.
• Promote patient advocacy by encouraging family members to request neurological and other interdisciplinary consultations in the hospital.
Source: “Management of the hospitalized patient with Parkinson’s disease: Current state of the field and need for guidelines,” Parkinsonism & Related Disorders, March 2011.