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Published on: January 12, 2019
Timeliness of diagnosis in motor neurone disease: a population-based study
Colette Donaghy1, Alison Dick, Orla Hardiman
1Department of Neurology, Royal Victoria Hospital, Belfast BT12 6BA, UK. Donaghy1a@hotmail.com
Abstract:
Following the observation from our experience with the Northern Ireland Motor Neurone Disease (MND) register that excessive delays appeared to exist in the diagnosis of patients with MND, we performed a population-based study of the length and factors involved in the diagnostic process. In 73 patients we found that the median time to diagnosis from symptom onset was 15.6 months, being shorter in bulbar onset patients and longer in females or those presenting with nonspecific gait disturbance. We divided this interval into three time periods--symptom onset to first medical contact, first medical contact to neurology referral and neurology referral to diagnosis. The time period from first medical contact to neurology referral was the longest of the three periods studied indicating that appropriate timely referral of patients to neurologists was responsible for the greatest delay in making a diagnosis of MND. We propose that improving the accessibility of neurological services could potentially reduce the time to diagnosis by at least three months.
Insights
Diagnosing motor neurone disease (MND) takes over 15 months, with delays often occurring before patients see a neurologist. Improving access to neurological services could significantly speed up diagnosis times.
Area of Science:
- Neurology
- Epidemiology
Background:
- Motor Neurone Disease (MND) diagnosis involves significant delays.
- The Northern Ireland MND register highlighted potential diagnostic process inefficiencies.
Purpose of the Study:
- To investigate the length and contributing factors of the diagnostic process for Motor Neurone Disease.
- To identify specific time intervals contributing most to diagnostic delay.
Main Methods:
- Population-based study analyzing diagnostic timelines in 73 patients.
- Division of the diagnostic interval into three key periods: symptom onset to first contact, first contact to neurology referral, and neurology referral to diagnosis.
Main Results:
- Median time to diagnosis from symptom onset was 15.6 months.
- Diagnostic delays were shorter in bulbar onset patients but longer in females and those with gait disturbance.
- The longest delay occurred between first medical contact and neurology referral.
Conclusions:
- Referral to neurology services represents the most significant delay in MND diagnosis.
- Enhancing accessibility to neurological services could reduce diagnosis time by at least three months.
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