Movement Disorder Clinic delivers outstanding patient care
A glass plaque on the wall of The Neuro’s Movement Disorders Clinic(MDC) identifies the clinic as a Parkinson Foundation (U.S.) Centre of Excellence, one of only a few in Canada. Indeed, over the past decade, The Neuro has created an multi-disciplinary team to deal with all aspects of Parkinson’s disease (PD) research, treatment and patient care.
“The team has grown a lot since I joined in 2002,” says Lucie Lachance, an MDC nurse-clinician who, along with her nurse-clinician colleague, Jennifer Doran, acts as a key contact with the clinic’s more than 1,000 PD patients. “Friday is our PD clinic day when the entire interdisciplinary staff appears — several neurologists, a physiotherapist, an occupational therapist, a speech pathologist, and a social worker.”
In The Neuro’s tradition of bringing the scientific bench to the patient bedside, the MDC’s attending neurologists also conduct PD research:
- Dr. Anne-Louise Lafontaine, MDC Director, conducts clinical trials of new PD drugs.
- Dr. Edward Fon, Scientific Director of the Neuro, investigates the cell biology of PD genes and serves as Director of the FRQS Quebec Parkinson Network (QPN) and co-Director of the Canadian Open Parkinson Network (C-OPN).
- Dr. Ron Postuma, chair of the Scientific Advisory Board of Parkinson Canada, conducts research focussed on early detection of PD.
- Dr. Guy Rouleau, The Neuro’s director, investigates genetic causes of PD.
- Dr. Madeleine Sharp investigates cognitive dysfunction and behavioural problems linked to movement disorders.
- Dr. Alain Dagher uses brain-imaging data to explain PD’s effects on thinking and emotion.
- Dr. Philippe Huot develops experimental models for new PD drugs.
- Dr. Michel Sidel is a movement-disorders specialist.
Constantly in touch with patients by email or by phone, nurse-clinicians Lachance and Doran collect data in a never-ending effort to improve patient care. They see themselves as pivotal players whose role begins as soon as the MDC receives a new referral.
“We triage the patients within two weeks,” says Lachance. “This creates an immediate link with newly diagnosed patients who are going through a stressful time and might worry about when we’ll respond. We tell them if they have questions, they can call us.”
The MDC nurse-clinicians have virtually eliminated wait times and made the MDC an efficient operation. The nurse-clinicians are preparing to publish their efficiency study findings, which they hope will inspire similar approaches at other medical institutions.
“On clinic day, patients see the neurologist for a period of time that depends on the complexity of their case and their state of health,” says Doran. “Patients also see Lucie and me. We can be more flexible in the amount of time we spend with patients to address their non-motor symptoms and psychosocial aspects of the illness. In the past, we saw patients after they saw their neurologist, but now we try to see them before because we find it’s more useful and efficient. We verify how they are taking their medication, how often, and how well it seems to be working. We also make sure that patients bring up any issues with the neurologist. And we do a lot of teaching about things like managing medication side effects and issues that aren’t managed by medication alone.”
PD patients are classified in five progressive stages, with stage five being the most severe. The majority of PD patients at the MDC are in stages one to three, meaning that they are sufficiently mobile and articulate to come alone. Occasionally families will bring stage four patients in a wheelchair. Some doctors at neighbourhood CLSCs will make home visits to see stage four and five patients.
“For advanced patients unable to come here, we can exchange information with the house doctor about adjusting medication,” says Lachance.
The MDC’s social worker, Pascal Girard engages with patients at all stages to see whether they can still work or live independently. In advanced cases, Girard will discuss palliative care.
In recent years, clinical trials, which are essential for developing new drugs, have taken on an increasing role in the MDC’s activity.
“We try to coordinate with our Clinical Research Unit so that clinical trial patients can come on the Friday clinic day,” says Doran. “That way, we can combine clinical care and research data.”
Doctors are continually monitoring the effectiveness of PD drugs and adjusting patients’ dosages. In the last few years, the MDC has offered an innovative drug-administering method called percutaneous endoscopic gastrostomy with jejunal tube (PEG-j), also known as Duodopa. A tube placed through the abdominal wall allows medication to be passed directly into the intestine. Instead of taking pills at a prescribed time, the patient has a continuously administered direct infusion.
“We have about 25 patients on Duodopa,” says Lachance. “People with Duodopa have more autonomy.”
The MDC is seeking its first candidate for a drug called sub-cutaneous apomorphine that was approved recently in Canada.
“It’s administered by injection like an EpiPen. We’ll have to try it first in clinic because the patient needs to be monitored for a risk of abdominal side effects and abnormal blood pressure.”
In some cases where PD drugs are less consistently effective, patients are offered surgical solutions. Neurosurgeon Abbas Sadikot has pioneered deep-brain stimulation surgery at The Neuro for PD patients. He is also the first in Quebec to employ a new surgical technique for tremor that involves the use of ultrasound.
April 8, 2019