Called the “Do Tell” Your Doctor Tool, the questionnaire is used to record such episodes, which can be hard to identify because these episodic symptoms and their frequency vary for each patient. Lack of awareness makes it difficult for patients to talk about off periods with medical professionals, and family and friends.
The questionnaire provides a visual guide and glossary to help patients recognize and document symptoms. It’s hosted by Live Well. Do Tell., an Acorda initiative that aims to address barriers that Parkinson’s patients and their caregivers face in communicating motor and non-motor symptoms.
Patients generally have a hard time explaining their off periods during doctor’s visits, resulting in missed opportunities for discussion, said Ron Cohen, Acorda’s president and CEO.
“We expect the ‘Do Tell’ Your Doctor Tool to increase effective communication between [people with Parkinson’s] and their healthcare providers, thereby enhancing their ability to optimize therapeutic outcomes,” said Cohen, MD, in a news release.
Parkinson’s is characterized by the lack of a brain signaling molecule called dopamine, which leads to tremors, stiffness, and slowness. Theoretically, replacing the missing dopamine would be an ideal way to treat the disease. But the molecule is too big to cross the blood-brain barrier, so a dopamine precursor called levodopa is used instead. When levodopa becomes dopamine inside the brain, Parkinson’s motor problems subside.
However, long-term use causes these beneficial effects to wear off before a new levodopa dose can be taken. That’s when symptoms re-emerge. Such off episodes can be offset to a certain degree by increasing either the levodopa dosage or the dosing frequency but doing so may cause dyskinesia — uncontrolled and abnormal movements. Other agents, including carbidopa, in combination with levodopa can reduce or help manage off episodes.
As for the online tool, it was adapted from a clinically validated questionnaire developed by Duke University with help from a multidisciplinary steering committee of Parkinson’s disease community leaders. It also underwent testing at InMotion, an Ohio wellness center that offers free evidence-based exercise and education programs and other support to Parkinson’s patients and their caregivers.
Using the tool, patients identify and rank symptoms. Their answers are then used to produce a tailored “word cloud” that delineates the symptoms and how troublesome they are at a glance.
“This tool will be a valuable resource to help improve conversations between people with Parkinson’s, their care partners and healthcare providers,” said Karen Jaffe, who has Parkinson’s and is a member of the Live Well. Do Tell. steering committee and the InMotion board. “We were excited to offer our input on this important tool to ensure it is user-friendly and serves the needs of our community.”
About one million U.S. residents, and 10 million people globally live with Parkinson’s disease. Some 40% of U.S. patients experience off periods within five years of starting treatment.
Acorda Therapeutics is the developer of Inbrija (CVT-301), an inhaled formulation of levodopa.