Framing the issue

• Parkinson’s disease is the second-most common neurodegenerative disorder in the U.S. after Alzheimer’s disease, yet it is still a rare condition relative to other chronic illnesses.

• Approximately 630,000 people in the United States had diagnosed Parkinson’s disease in 2010 — a number expected to double by 2040.

• The combined direct and indirect cost of Parkinson’s disease, including treatment, Social Security payments and lost income, is estimated to be nearly $25 billion per year in the U.S.

• People with Parkinson’s disease are admitted to the hospital 50 percent more than their peers.

• Once admitted, people with Parkinson’s disease typically have longer hospital stays than their hospitalized peers.

• A 2011 survey found that respondents at most National Parkinson Foundation-recognized hospitals were not confident that patients received their Parkinson’s medications on time in the hospital or that staff were familiar with contraindicated drugs.

Effective Parkinson’s treatment may not require a village, but consensus is growing among providers that it would definitely benefit from a team.

The emerging paradigm expands responsibility for the patient beyond the physician as sole practitioner to a multidisciplinary team that includes physical, speech and occupational therapists, as well as social workers. Evidence is mounting that the team approach improves quality of life for Parkinson’s patients, reduces hospitalizations and saves money.

The disease, which affects nearly 1 million people in the United States, is a complex, progressive neurodegenerative condition with no known cure. Associated with more than 20 motor and nonmotor manifestations, Parkinson’s presents differently in every patient, and its manifestations change over time, notes Michael S. Okun, M.D., professor and neurologist at the University of Florida and medical director of the National Parkinson Foundation.

These various manifestations can land Parkinson’s patients in the hospital — falls can lead to fractured bones, or difficulty swallowing can lead to aspiration pneumonia, for example. But, as inpatients, people with Parkinson’s can be challenging to care for. The relative rarity of Parkinson’s creates difficulty for hospital staff, Parkinson’s disease experts say.

For example, drug regimens for Parkinson’s patients are often complicated, with some patients requiring medication every hour or two, Okun says. Yet, medication schedules for Parkinson’s patients are often changed to match schedules of other drugs to better accommodate the nursing schedule, note the authors of a literature review published in 2011 in the journal Parkinsonism & Related Disorders.

A missed or delayed dose can quickly worsen mental and motor symptoms. “Parkinson’s disease medications are as necessary for a Parkinson’s patient as insulin is to diabetics,” says Peter Schmidt, vice president of research programs at the National Parkinson Foundation.

However, because Parkinson’s is seen less frequently in the hospital than other chronic conditions, medication management protocols and drug alerts by and large haven’t been a focus in electronic health record or computerized physician order entry systems, Schmidt says. Furthermore, drugs commonly prescribed in hospitals — antipsychotic drugs, for example — may exacerbate Parkinson’s symptoms. And some hospitals may not stock all Parkinson’s medications.

“In general, community hospitals are a dangerous place for Parkinson’s patients, but so are university hospitals,” Okun says. “Even if there are Parkinson’s specialists there, it doesn’t mean that day-to-day the care is done optimally.”

ParkinsonNet

To improve care and avoid hospital stays for Parkinson's patients, many hospitals are exploring team-based approaches, among them, Kaiser Permanente’s Southern California Permanente Medical Group, which serves more than 7,000 members with Parkinson’s disease. Starting in September 2014, Kaiser Permanente adopted ParkinsonNet in partnership with Radboud University in the Netherlands, which developed the program.