Panelists Call for Broader Approach to Caring for Parkinson Patients

November 1, 2005
Laura Newman, MA

Parkinson disease, Disease management

Some physicians view Parkinson disease (PD) strictly as a movement disorder, but their focus needs to shift to a patient-centered, chronic disease care model. Much more could be done to empower patients and bolster their quality of life, according to speakers participating in a National Institute of Neurological Disorders and Stroke webcast last month.

Patients would be doing a lot better if their health team adopted a patient-centered strategy, according to panelist Monique L. Giroux, MD, director of the outpatient movement disorders clinic and neurology rehabilitation program for PD at the Cleveland Clinic Foundation. Although movement disorders are the most widely recognized and treated symptoms of PD, impairments in speech, cognition, and mood; blood pressure changes; pain; and bowel and bladder problems all too often go overlooked, she noted.

Giroux is urging neurologists to take a disease management approach. Such an approach has been applied to many other chronic conditions, including heart failure and diabetes. However, "there is no parallel to a hemoglobin A1c for neurodegenerative diseases," she explained in an interview with Applied Neurology.

Neurodegenerative diseases are very different: impairments are highly visible and disfiguring, and the disease is seen as relentless. Clinicians, patients, and their families would have to reexamine their feelings of futility about PD if a disease management approach were to work. According to Giroux, "We'd also have to move away from the physician being the be-all and end-all of Parkinson's care."

Giroux sketched out a more optimistic comprehensive care, disease management approach to PD, in which the emphasis would be on wellness, not disease, and would include patients and caregivers as active team members, encouraging them to be proactive and not reactive. As in other chronic diseases, lifestyle and preventive measures (such as fall prevention and balance and gait exercises) would be incorporated into a patient-centered model.

A multidisciplinary clinical team would have to work both together and as partners with their patients. At the Cleveland Clinic, a PD rehabilitation team consists of a neurologist, 2 physician assistants, physical therapists, occupational therapists, speech therapists, recreational therapists, and social workers.

Not surprisingly, making progess with patients early in the disease course is most likely to be successful in patients who adopt and sustain better habits and improve their quality of life. Earlier recognition and long-term disease management are key, according to Giroux. "That's the best time for us to help patients better manage their symptoms, ensure that their homes are safe--and generally encourage them to be more proactive. For more advanced patients, we concentrate on ensuring that the patient is safe, the caregivers get support, and we work on maximizing socialization and mobility," she said.

Anticipating disease-related changes and helping patients prepare for them also should be incorporated into care. Comprehensive care teams are in their infancy in the United States, but Israel, Australia, and England adopted them long ago. In the United States, team approaches will not catch on so easily. Medicare and managed care will have to be convinced through outcomes and cost-effectiveness studies that demonstrate the worth of these approaches. Scientific studies are only getting under way.

Story Landis, PhD, director of the National Institute of Neurological Disorders and Stroke, said that the comprehensive care team approach should extend into the community. "We have to give up the idea that everyone can only be treated at an academic medical center," she said. "It is just not going to be feasible." Landis pressed for a "university without walls" strategy, in which professionals could bring community-based practitioners up-to-date on wellness strategies. Giroux said that she trains community-based physical therapists in how to teach people to strengthen their gait and balance. "It's a way that medicine is going to have to shift as we need to find ways to care for aging geriatric patients." *