Patients, medics and carers collaborate in Parkinsons battle

Patients with Parkinsons, medics and carers have identified the top ten priorities for research into the management of the condition in a study by the University of East Anglia in Norwich and Parkinsons UK.

Commissioned by Parkinsons UK, people with direct and indirect personal experience of the condition worked together to identify crucial gaps in the existing evidence to address everyday practicalities in the management of the complexities of Parkinsons.

Patients stated that the overarching research aspiration was an effective cure for Parkinsons but whilst waiting for this more research was needed into the management of the condition.

Top of the list, which was narrowed down from a list of 94 uncertainties, was the need to identify what treatments help reduce balance problems and falls in people with Parkinsons.

This was followed in second place by questioning what approaches are helpful for reducing stress and anxiety in patients, and what treatments help reduce involuntary movements a side effect of some medications in third place.

Also outlined in the top ten research priorities for Parkinsons management, published on BMJ Open, are better monitoring methods, improving sleep quality and the need to develop interventions specific to the different types of Parkinsons and the dementia that can be associated with Parkinsons.

Dr Katherine Deane, lead researcher from the University of East Anglia, said: Ensuring that research is effective in addressing the needs of patients and the clinicians treating them is critically important, and the priorities will inform the research plans and funding from Parkinsons UK and hopefully other funders.

The research agenda has been accused of being overly influenced by the pharmaceutical industry and of not addressing the questions about treatments that are of greatest importance to patients, their carers and clinicians.

Research needs to focus on whether treatments are doing more harm than good, or whether one treatment is better than another, and ensure the outcomes reflect issues that have impact on the patients wellbeing and participation.

These priorities identify crucial gaps in the existing evidence to address everyday practicalities in the management of the complexities of Parkinsons, with an overarching research aspiration to work towards an effective cure for Parkinsons.

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Patients, medics and carers collaborate in Parkinsons battle