22/12/22 - A diagnosis of motor neurone disease is devastating for the person on the receiving end of this news and their family caregivers.
Telling someone that they have this incurable neurodegenerative disorder is also challenging for the neurologist delivering the diagnosis.
Patient, family carer and clinician experiences and perceptions of MND diagnostic communication are explored in a recently published study involving UK and Australian researchers.
Professor Samar Aoun, Perron Institute Research Chair in Palliative Care at The University of Western Australia was a contributor, the UK study having replicated the Australian study developed by Professor Aoun and colleagues in 2015.
“A diagnosis of MND and the subsequent progressive loss of independence, uncertain future and changes to everyday life have a profound effect on the person living with MND and their loved ones,” she said.
“How the diagnosis is delivered can have a significant impact on patient outcomes such as understanding the condition, contributing to decision making, psychological adjustment and satisfaction with care.”
Professor Aoun, recently announced as WA’s 2023 Australian of the Year, said the results from the recent UK study, similar to the Australian study, showed there was a need for neurologists and neurology services to be more aware of the needs of people with MND and their caregivers when they are told the diagnosis.
“An appropriate setting and allowing more time when breaking the news is critically important,” she said. “Also essential is demonstrating more empathy and clear and honest communication, explaining what the patient can expect, and the care pathway and support services available, such as linking them to MND Associations.
“Training in a person-centred approach ensures that delivery of the MND diagnosis acknowledges the person’s psychosocial, spiritual and emotional needs as well as their medical and practical concerns.
“Empathy training is crucial in implementing best practice guidelines that have been developed internationally.”
The UK study, published in the Journal of the Neurological Sciences, was led by Professor Mary O’Brien and Jennifer Kirton, Edge Hill University, UK. Other organisations involved in the collaboration were the University of Sheffield, The University of Western Australia, the Perron Institute, La Trobe University and the University of Kent.
Photo above L-R: Prof Samar Aoun with Drew and Maureen at the Perron Institute clinic (photo credit Kelly Pilgrim-Byrne).
Tennille Kroemer, Communications Manager, Perron Institute
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