Poll Finds 1 in 4 People With Parkinson Disease Misdiagnosed

January 8, 2020
Matthew Gavidia

In a poll of people with Parkinson disease, more than 1 in 4 (26%) participants reported having been misdiagnosed, with a further 21% having to see their general provider 3 times before being referred to a specialist.

In a poll of people with Parkinson disease (PD), more than 1 in 4 (26%) participants reported having been misdiagnosed, with a further 21% having to see their general provider 3 times before being referred to a specialist, according to a report published by The Guardian.

The poll, for the charity Parkinson’s UK, included more than 2000 patients with PD (PwP). Results showed that among participants who were misdiagnosed, 48% were given treatment for their nonexistent condition, with 36% receiving medication, 6% undergoing operations or procedures, and 6% given both medication and operations/procedures. A decline in health was reported in 34% of those misdiagnosed, and women were shown to be more likely to be misdiagnosed than men.

Management of PD symptoms has been shown to be critical to physical and financial well-being of PwP, as OFF periods, which occur when symptoms are uncontrolled, have been found to impede work productivity and employment for PwP. Furthermore, caregivers of PwP undergoing OFF periods have been shown to be exposed to a greater impact on their paid employment through a loss of earnings, loss of opportunities, and inability to maintain employment compared with caregivers for patients without OFF periods, stressing the critical need for proper diagnosis and treatment.

Katie Goates, MSc, BSc, professional communications and engagement program manager at Parkinson's UK, highlighted the difficulty in diagnosing PD, which is a complex condition of more than 40 symptoms, as one of the chief reasons behind the poll’s findings. “One of the biggest challenges for Parkinson’s research is that there is no definitive test for Parkinson’s, and as a result we’ve heard of people being misdiagnosed with anything from a frozen shoulder or anxiety to a stroke,” said Goates.

As PD is commonly linked to people over 40 years of age, proper diagnosis can be an issue for those with early-onset PD, an issue found by Katy Dickinson, who was diagnosed with PD at the age of 27 but had experienced symptoms for years. “It took 4 years of appointments and being told that I was ‘doing it to myself’ before I got my diagnosis,” said Dickinson.

Dickinson noted that her motor skills declined to where she kept falling and at her worst, she could not eat, causing severe dehydration and weight loss. Even after this, doctors wanted to send her home the next day after hospitalization, but nurses insisted on her continued care. “I was admitted to a hospital and had every test going — ultrasounds, ECGs and drug tests and still the doctors were stumped until I finally saw a neurologist and he diagnosed Parkinson’s. In total, I was in hospital for 6 months,” said Dickinson.

Diagnostic testing for PD usually revolves around how a patient moves and requires the patient to walk for extensive distances and amounts of time, a technique that an international team of researchers from Saudi Arabia cites as uncomfortable and unacceptable. To improve testing for PD, these researchers are developing an experiment that would require subjects to press 1 or 2 buttons at a time on a mobile device. The algorithm utilized in the experiment would seek to connect data points from recurrence plots and find similarities and differences in subject groups, such as those with and without PD.

Further innovations within PD diagnosis include screening tech advances for early detection of PD that can spot the condition when there are no obvious symptoms, which is slated for potential availability within 3 years. In the meantime, heightening awareness and providing greater education to clinicians is vital, specifically around how the disease may affect men and women differently. By diagnosing PD at an early stage, clinicians can assist patients in controlling symptoms and avoiding the debilitating effects of OFF periods.

“We are investing in vital research to find a much-needed diagnostic test, but we also recognize the key role that health professionals have in helping people with Parkinson’s get the right diagnosis and treatment as soon as possible,” said Goates.