FINALLY! A fast, easy tool to track patient reported outcomes associated with PD
Free to download- Scores available immediately
Measuring the Burden of Disease
The PRO-PD was created because other scales do not permit this type of analysis. The PRO-PD is a patient-centered, continuous measure of disease severity that is stratifiable by symptom and correlates with quality of life and existing scales for PD severity (e.g. UPDRS, HY).[Mischley LK, 2017] Lower Scores are Better.
We surveyed over a thousand indiviuduals with PD and asked them to describe their symptoms. The most common symptoms were fatigue, impaired handwriting, loss of smell, memory impairment, and muscle pain.
Know your PRO-PD Score
Disease modification is only possible if we have a way of measure it. The symptoms of Parkinsonism come on slowly, the fluctuate, and are often vague and difficult to rate.
Reversal= PRO-PD Score goes down, negative slope.
Stabilization= PRO-PD Score unchanged.
Progression= PRO-PD Score increases over time.
An App to Track PRO-PD
In Sept 2020, we submitted a $250,000 application for a grant to develop a PRO-PD app that could be used by patients, providers, and researchers.
Until resources become available, this project is on hold.
About Us
The Value of a Report Card
Statistically speaking, the typical PRO-PD score is about 550 at diagnosis and increases at a rate of about 38 points per year.
Patients find this motivating and I find it tremendously useful in clinic.
Tracking Symptoms Over Time
This is a motivated individual that exercises daily. A back injury a year ago has interfered with his exercise, and he's noticed a slight worsening of symptoms lately.
Optimizing Treatment
In clinic, I use charts like this to track my patients changes over time.
Patients are empowered when they see lifestyle changes pay off. A sudden worsening triggers me to find out what else might be going on.
RADAR CHARTS
Parkinsonian Signature
200+ years into this disease, we all agree this isn't one disease, but nobody can figure out how to find/ define sub-types. Each person presents with a unique set of symptoms.
Personalized Medicine is Essential
It is not enough to treat PD, we have to treat the patient.
Each patient should identify which symptoms are contributing most, and target treatments toward those symptoms.
The more successful the management,
the lower the PRO-PD score.
What Does Success Look Like?
The person is feisty, driven, smart, resourceful, generous, and was fortunate to be diagnosed early. Her daily routine includes exercise, a plant-based diet, an a rich social community..