Media release

From: QIMR Berghofer

A major QIMR Berghofer-led study has found that Australians living with Parkinson’s disease are nearly three times more likely to suffer from chronic pain compared to the general community, with two thirds of patients experiencing the debilitating symptom.

It is the first time the extent and severity of chronic pain have been measured on such a large scale in Parkinson’s disease, highlighting the urgent need to treat this issue alongside motor symptoms such as tremors to improve the quality of life of patients.

The findings have been published in the journal Annals of Clinical and Translational Neurology.

QIMR Berghofer Associate Professor Miguel Rentería who led the study said it was common for patients with Parkinson’s to report pain but there was a lack of data about the issue.

“Chronic pain is a symptom that is often underrecognised, underdiagnosed and undertreated, and it really impacts the quality of life of people living with Parkinson's disease.

“Previous studies were done in only small groups of people so there was a need for more evidence. We have now been able to look at more than 10,000 people which gives us a much better understanding of just how prevalent chronic pain is in Parkinson’s.”

Researchers analysed data from 10,631 participants in the Australian Parkinson’s Genetics Study (APGS) which is led by QIMR Berghofer and supported by the Shake It Up Australia Foundation and the Michael J. Fox Foundation for Parkinson’s Research.

Two-thirds of study participants (66.2 per cent) reported chronic pain, which is significantly higher than the general population of a similar age where the prevalence of pain is estimated at 23 per cent in men and 30 per cent in women.

Chronic pain is defined as pain that persists for more than three months and occurs every day or most days.

The study found pain was more common and more severe in women, with 70.8 per cent of female participants experiencing pain compared to 63.5 per cent of men.

The most common body sites affected were the buttocks (35.6 per cent), lower back (25.4 per cent), neck (19.4 per cent) and knees (17.2 per cent).

The research also highlighted the major impact that pain has on the quality of life of participants, affecting mobility, sleep, independence and emotional wellbeing.

Researchers found that pain was strongly linked to depression, sleep disorders and osteoarthritis. Exposure to pesticides, heavy metals, and alcohol was associated with increased pain, particularly among men.

“We would like our research to have a real impact on people's lives, and we want to do research that matters to people living with Parkinson's and one of the most debilitating symptoms that they report is chronic pain,” A/Prof Rentería said.

“Our hope is that these findings will mean that chronic pain becomes a symptom that is appropriately recognised, monitored and managed in Parkinson’s, to improve the quality of life of people experiencing pain.”

Neurologist Dr Kishore Kumar, a co-author on the paper and researcher at the Garvan Institute of Medical Research said the findings are important because they raise awareness about the need to spend time in the clinic asking patients directly about pain.

“As clinicians, we are often focused on the motor symptoms of Parkinson’s but we need to make sure we are not neglecting the non-motor symptoms like pain so we can treat that aspect of the disease and improve the lives of patients with Parkinson’s,” Dr Kumar said.

Shake It Up Australia Foundation CEO Vicki Miller said the results highlight a long-standing gap in Parkinson’s care.

“Many people with Parkinson’s suffer in silence. Pain is invisible, but it’s real and this research finally gives us the numbers to back what the community has been saying for years,” Ms Miller said.

“We are proud to support research that looks beyond the lab to understand what truly affects people’s lives. Studies like this are crucial to driving better support, earlier diagnosis, and more compassionate care.”

The research is the first major finding to come out of the ongoing Australian Parkinson’s Genetics Study (APGS) which launched in 2020 with the aim of uncovering the genetic basis of Parkinson's disease to help identify new therapeutic targets and personalise treatments.

Participants completed a questionnaire about their medical history, lifestyle and symptoms, including pain.

The paper can be found here in Annals of Clinical and Translational Neurology with DOI: 10.1002/acn3.70174