When receiving a medical diagnosis, how the message is told can have a dramatic effect on how you respond. Studies conducted in Australia and the UK about such messaging when a patient diagnosed with motor neurone disease (MND) show how much the way people are told can impact that person's life and those of their loved ones.
Patient, family carer and clinician experiences and perceptions of MND diagnostic communication were explored in a UK study that involved Australian researchers and was modelled on a prior study from the latter country.
University of Western Australia Perron Institute Research Chair in Palliative Care, Professor Samar Aoun, was involved in the UK study, which replicated one she and fellow colleagues conducted 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, WA's 2023 Australian of the Year, said the results from the UK study had similar results to the Australian one, in that neurologists and neurology services have 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.
