Every 27 minutes, someone in Australia is diagnosed with Parkinson's disease . Best known for its tremors, movement and balance issues, it also brings another, often overlooked burden – persistent pain.
Now, new research from the University of South Australia shows that many people with Parkinson's are struggling to manage their pain, with researchers calling for more individualised, multidisciplinary and empathetic care.
In two studies that assessed how people with Parkinson's manage pain and their experiences of pain care services , researchers found notable gaps in support, with many people resorting to trial-and-error strategies due to a lack of tailored clinical care.
In Australia, more than 65,000 people with Parkinson's disease experience persistent pain.
Lead researcher and UniSA PhD candidate Anthony Mezzini says we need to improve quality pain care for people with Parkinson's.
"Pain is a prevalent and debilitating non-motor symptom of Parkinson's. It's one of the most troublesome issues in early-stage Parkinson's and a leading case of reduced quality of life," Mezzini says.
"People with Parkinson's told us that they often rely on trial-and-error approaches to manage their pain – not because they want to, but because they don't always have access to specialist pain support or tailored advice.
"When pain care worked well, it was because healthcare professionals – especially allied health practitioners and Parkinson's nurses – took the time to listen, understand their experience, and tailor care to their specific needs."
Researchers found that people's experiences of pain care were shaped by five key features: empathy and understanding, listening to needs and concerns, clear explanations, Parkinson's-specific knowledge, and individualised treatment.
However, these qualities were inconsistent across the health care system, with people reporting mixed feedback about the support they received from general practitioners and neurologists, and significant access barriers in rural and regional areas.
UniSA's researcher and Parkinson's Nurse Dr Sue Sharrad says improving pain management for people with Parkinson's requires both greater access to multidisciplinary care and enhanced training for healthcare providers.
"Embedding empathetic, individualised care into routine practice – and expanding access to Parkinson's nurses and allied health professionals – could make a real difference," Dr Sharrad says.
"Parkinson's specialist nurses and allied health professionals are often praised for their high level of care. We need to ensure that every person with Parkinson's receives pain care that's tailored, evidence-based, and delivered by professionals who understand the complex nature of Parkinson's pain.
"Pain is not just a symptom – it's a major factor that affects quality of life. By making care more personalised, coordinated, and compassionate, we can help people with Parkinson's live better, less painful lives."
The research forms part of UniSA's ongoing work to improve quality of life for people living with neurological conditions.
The multidisciplinary research team includes Anthony Mezzini, Prof Saravana Kumar, Dr Sue Sharrad, Dr Joanne Harmon, and Prof Marion Eckert.
The research papers can be accessed here:
