New Canadian Clinical Guideline for Parkinson’s Disease

In 2012, Parkinson Canada released the first Canadian Guidelines for Parkinson’s Disease, outlining clinical standards in the diagnosis and treatment of Parkinson’s disease (PD). The second edition, providing updates with input from healthcare professionals and people with PD, was released in September 2019. These guidelines are intended to be used by healthcare professionals in clinical practice to enhance care, however, they may also be useful for others wishing to expand their knowledge of Parkinson’s disease.

The Guideline includes 97 recommendations for Parkinson’s care, divided into five sections:

• Communication: outlines the best practices in effective communication between healthcare professionals and people with PD, as well as their families and carepartners
• Diagnosis and Progression: highlights important considerations for healthcare professionals who diagnose PD, and explains the variation in Parkinson’s symptoms and disease progression from person to person
• Treatment: defines different treatment and symptom management options, including medications, surgical interventions, exercise, and rehabilitation
• Non-Motor Features: outlines non-motor symptoms like mental health problems, urinary dysfunction, weight loss, gut issues, and more, and explores treatment and management options
• Palliative Care: explains how palliative care can – and should – be implemented from the point of diagnosis

Developing the Guideline

The 2019 Guideline is informed by advancements in the fields of Parkinson’s research and treatment practices, alongside changes in the general standards of care for life-altering, chronic, degenerative, and neurological diseases since 2012.

A multidisciplinary team of PD experts collaborated to find the best published evidence to provide the basis for this guideline’s recommendations. Where research evidence was not available, the team of experts used their consensus to offer clinical advice.

This edition features a new section focusing on palliative care, and includes more information on coping with mental health and cognitive changes. It also places a significant focus on patient-informed care and decision making. The key points from this updated guideline are summarized below (Ferarri, 2019):

1. Impulse control disorders can develop in a person with Parkinson’s on any dopamingeric therapy, at any stage – especially those taking dopamine agonists.
2. Surgical therapies like DBS and levodopacarbidopa gel infusion (Duodopa® therapy) are being increasingly used in Parkinson’s to manage motor symptoms and fluctuations.
3. Evidence exists to support early institution of exercise at the time of Parkinson’s diagnosis in addition to the clear benefit now shown in those with well-established disease.
4. Palliative care requirements of people with Parkinson’s should be considered throughout all phases of the disease, which includes an option of medical assistance in dying (MAiD).

Communication

For healthcare professionals, honest, clear, and empathetic conversation is the key to establishing and maintaining a good relationship with patients. Effective communication elevates the quality of care, because it allows for patients to be more involved in decision-making and self-management.

The Guideline provides recommendations that set a high standard for communicating with people with Parkinson’s, and their families and carepartners. Many of these are helpful to understand as a patient, as a means of evaluating your current care, but also because they can be implemented on both ends of conversation.

To enable people with PD to be active decisionmakers in their care, the Guideline advises healthcare professionals to provide useful, relevant, comprehensive, and evidence-based information. Taking into account the cognitive changes, communication challenges, and mental health issues that may be present for many people with PD, the Guideline also recommends that communication be accessible, timely, and provided both verbally and in written form.

Important for building a strong relationship between patients and their healthcare providers, the Guideline also reinforces the standard of optimistic, encouraging communication. It calls for a “person-centred” approach to care, which includes communication that is tailored to the individual patient and their evolving medical needs through each stage of disease progression. Also advised is the inclusion of family and carepartners in conversations about care, so that they may effectively support their loved one in selfmanagement and self-advocacy.

As a chronic and progressive disease, Parkinson’s can be difficult to talk about candidly. It is important for your healthcare team to ensure you feel comfortable and empowered, while being well-informed and educated on all aspects of your medical condition. In return, it is valuable to be candid with your healthcare team, and share updates on your condition, ask questions, and voice your opinion on potential treatment options.

Diagnosis and Progression

Since Parkinson’s can sometimes be mistaken for other conditions like essential tremor or dystonia, diagnostic criteria are crucial in helping healthcare professionals make an accurate and informed diagnosis. The Guideline maintains that anyone presenting with T.R.A.P. – tremor at rest, rigidity, akinesia (impairment of voluntary movement), and postural instability – should be evaluated for a potential PD diagnosis. It recommends referring patients to a neurologist or other specialist with knowledge of differential diagnoses of Parkinson’s and other parkinsonisms, structural brain changes, or tremors resulting from drug exposure. CT (computerized tomography) and MRI (magnetic resonance imaging) scans are not used for PD diagnosis; instead, the Guideline recommends testing the diagnosis with a medication trial of dopamine replacement therapy, through prescribed dopamine agonists.

Genetic testing for Parkinson’s is not recommended by the Guideline at this time, because there is insufficient research linking PD genes to disease onset, and as such, there is no established treatment or therapy that can be used to delay or prevent PD.

Treatment

Parkinson’s treatment can include drug therapy, surgical interventions (Deep Brain Stimulation, Duodopa®), physiotherapy, occupational therapy, psychology, and other support services. According to the Guideline, Levodopa remains the “gold standard” in Parkinson’s treatment (Ferrari). Alongside the drug, exercise has been shown to have the greatest benefit to people with PD, and rehabilitative therapy is now recommended from the point of diagnosis, as a means to instituting a regular exercise routine and healthy habits. The Guideline recommends therapies focused on balance, walking, flexibility, strength, aerobics, and functional independence, and notes benefits not only for the patient’s health and wellbeing, but also their overall mobility and performance of activities of daily living.

Non-Motor Features

People with Parkinson’s can experience cardiovascular, gastrointestinal, urogenital, thermoregulatory, and other autonomic functioning problems as non-motor symptoms. Although there is insufficient research available to guide recommendations on the management of many of these symptoms, the Guideline offers the following advice for healthcare professionals:

• Botox (Botulinum Toxin) injections can help control drooling.
• Drug therapy using domperidone can help low blood pressure.
• Depression, anxiety, and other mental health challenges can be managed through counselling and support services.
• Drug therapy using clonazepam and/or melatonin can suppress sleep disorders.
• Cholinesterase inhibitors may be effective in treating cognitive decline in PD, though more research is needed to introduce these drugs as a standard.

Palliative Care

Since the last edition of the Guideline, “palliative care” has been redefined. Across all chronic, progressive, and degenerative illnesses – otherwise known as life-altering conditions – palliative care is now being introduced as a standard part of disease management.

Palliative care can refer to two things: supportive therapy, and the philosophy of person-centred care. Previously, this term was most often used to describe end-of-life care, which is centred around making the patient feel comfortable and stable. However, more recently, healthcare professionals have shifted towards an approach to care that takes into account these same values in the treatment of people with conditions like neurodegenerative diseases, cancers, and terminal illnesses.

For people with Parkinson’s, adopting a palliative philosophy on care involves a holistic approach to disease management. Alongside a healthcare team treating motor and non-motor symptoms, people with PD benefit greatly from the aid of social workers, home care staff, support groups, counsellors, and others in their support network. This is why the Guideline recommends all healthcare professionals take a palliative approach with their patients with PD, particularly by adapting their communication style, and readily providing information on disease progression, possible medication or treatment side effects, advance care planning, and support services. These discussions should also closely involve trusted family members, friends, and carepartners who help the person with PD feel heard, supported, and comfortable in their care. With regard to end-of-life care, the Guideline also recommends healthcare professionals discuss the option of Medical Assistance in Dying with patients and their loved ones.

Implementation and Next Steps

Parkinson Canada has worked to disseminate their Guideline across Canada, also making it easily accessible online. A noted barrier to the implementation of these standards of care is access to healthcare professionals who are either specialists in Parkinson’s management, treatment, and/or diagnosis. As a result, the Guideline is intended also to be a tool for future advocacy efforts on a federal level.

Sources

David Grimes et al. (2019) Canadian Guideline for Parkinson Disease. Canadian Medical Association Journal 191(36). Retrieved from: https://doi.org/10.1503/cmaj.181504

Ferrari, Grace (2019). Canadian Guideline for Parkinson Disease 2nd Ed. - Parkinson Canada. Presentation, Moving Forward, Together Conference.

This content was published in the Winter 2019 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.