Quality of life: how people with Parkinson’s define it

When researchers design a clinical trial to evaluate the effectiveness of a new drug or therapy, one of the tools they use to assess the treatment’s impact on a patient’s quality of life is a generic questionnaire, called a preference-based measure.

At McMaster University, Assistant Professor Ayse Kuspinar thinks researchers, clinicians and policymakers would get better information on how well a treatment works for people with Parkinson’s disease if they could use a questionnaire designed specifically for that purpose.

That’s why Kuspinar, a rehabilitation scientist, is conducting interviews and gathering feedback from people with Parkinson’s about just what quality of life means to them.

“We’re going to ask them, ‘What areas of your life are most affected by your Parkinson’s disease?’,” Kuspinar says. “It might be social participation, like being able to spend time with grandchildren – or it might be specific symptoms, like tremors. “

Once she has enough information from a pool of people with Parkinson’s, Kuspinar will be able to incorporate their values and their preferences into a new questionnaire that can be scored to produce a single numerical value.

That questionnaire will eventually help doctors, researchers and even policymakers decide which Parkinson’s drugs and treatments to approve, to administer and to pay for, as well as help clinicians assess whether a treatment is working.

“If we have a questionnaire that’s developed for people with Parkinson’s…it should allow us to capture the benefits of these treatments more precisely. Even more importantly, it allows us to assess these benefits from the patient’s perspective.”

“The challenge is that different types of treatments can have benefits on the health and quality of life of people with Parkinson’s, but it’s difficult to decide which treatment should be offered or approved, and at what cost,” she says.

“If we have a questionnaire that’s developed for people with Parkinson’s…it should allow us to capture the benefits of these treatments more precisely. Even more importantly, it allows us to assess these benefits from the patient’s perspective.”

Scoring the questionnaire can help doctors and researchers decide if a treatment is effective if it produces an improvement in only one domain – such as physical symptoms – versus all the domains people with Parkinson’s consider important.

As a physical therapist, Kuspinar always valued even the incremental improvements she saw with her patients, whether it was better walking or their ability to get out of bed. That’s why she wants to measure those improvements objectively and factor them into decision-making about how well a therapy is working.

“We have an important role and impact in improving the lives of people who are struggling,” says Kuspinar. “We can make a big difference … that has been my reason to pursue this path.”