If you ask a neurologist to describe Parkinson’s disease, most will tell you it’s a disease defined by tremor, rigidity, slowness, and stooped posture. A few years ago, we surveyed over 1000 people with Parkinson’s (pwp) and asked them to describe their symptoms–fatigue, impaired handwriting, loss of smell, memory problems, and muscle pain were the most common.
Patient-centred care I have spent the past few years reflecting on the discrepancy between how patients and providers view this disease. I keep coming back to this idea that PD has been defined by the symptoms that providers can observe, not by the symptoms the patient experiences. Currently, PD is understood and managed from a provider-centered paradigm. A shift to patient-centered care is highlighted as one of the key targets for developing a healthcare system that meets patient needs. Patient-centered care is defined as being “respectful and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” What does patient-centered care look like in PD? In our clinic, before each visit, patients are asked to go to the website www.PROPD.org and rate the severity of their symptoms. The PRO-PD tool allows us to track symptom change over time, identify which symptoms are getting better, which are getting worse, and allows us to set goals specific to the needs of the patient.
Putting patients in power Appointments begin by asking the patient about his/her goals for the visit. Do they have a list of questions or any specific symptoms they would like us to prioritize? To keep the focus on patient empowerment, patients are asked about changes they have made since we last met. Equally important, patients are asked about obstacles preventing them from meeting their goals and we spend clinic time problem-solving together.
Treat the patient, not the disease While I prescribe dopaminergic pharmaceuticals, the majority of clinic visits are focused on education—addressing nutritional needs, how and where to exercise, how to prevent social isolation, emerging research related slowing progression, etc. I remind the patient that I am working for them; they are employing me to give an opinion. My job is to teach them about the therapeutic tools available to them. Their job is to weigh the potential risks and benefits of my suggestions and decide whether or not to proceed with the care plan. Perhaps our inability to solve the PD conundrum has less to do with the complexities of the disease, and more to do with the inability of providers, researchers, and patients to coordinate and communicate. As patients find their voice and providers are forced to confront the limitations of our current approach, a shift to a patient-centered paradigm will be essential and inevitable. The future of PD care has to change. My hope is that a team-based approach with patient-centered care will become the new normal.
Keith Black, who attended Fighting Fit in October 2019, is a regular user of the Pro-PD tool. Keith says:
I like to try out various ‘remedies’ on myself and see what benefits, if any, I experience. To be more objective I need a tool to help measure my current state and compare it with my previous state and, ideally, others of my age or years since diagnosis – Pro-PD is such a tool. You are asked 35 questions about your physical and mental wellness and based on your responses are given a score which you can record for future reference. I find this score an objective way in determining how I am doing/feeling, and provides an easy way to compare any changes. Dr Mischley also provides a graphic which displays exercises, foods and supplements and their impact on Parkinson’s.
The Pro-PD questionnaire can be accessed for free here – https://educationismedicine.com/pro-pd
Why not try it out yourself?