New research shows tens of thousands more people in the UK could be living with a neuromuscular disease than previous estimates suggested


Tens of thousands more people in the UK could be living with neuromuscular disease (NMD) than previous estimates suggested, according to new research.

study in the journal PLOS ONE, which analysed millions of GP records, suggested that the prevalence of NMDs in primary care was similar to that of multiple sclerosis and Parkinson’s disease.

Muscular Dystrophy UK (MDUK), which funded the investigation, said the findings suggested that there were around 110,000 people in the UK with a muscle-wasting condition, compared with an earlier estimate of 70,000.

Dr Iain Carey PhD, senior lecturer in epidemiology, who led the study, said that ‘a rise in prevalence among older age groups suggests that some of these conditions are now much more common within an ageing population’

MDUK said it would use the information to push for better neuromuscular services in the NHS and social care system.

The study

The researchers estimated incidence and prevalence for a range of NMDs between 2000 and 2019 using information from the Clinical Practice Research Datalink. Rates were age-sex standardised to the most recent population so that trends could be plotted over time.

Overall, the researchers used 22 different groups to classify patients.

Between 7.9 million and 13.1 million patients were actively registered on 1 January of each year over the 20-year period.

By 2019, 28,230 of those had ever received a NMD diagnosis, or 223.6 per 100,000 of the population. The rate for males was higher than for females: 239.0 versus 208.3 respectively.

Standardising to mid-year population estimates for the UK produced a lifetime prevalence estimate of 220.3 per 100,000 of the population.

The most common conditions per 100,000 for both males and females were:

  • Guillain-Barre syndrome (40.1)
  • myasthenia gravis (33.7)
  • muscular dystrophy (29.5)
  • Charcot-Marie-Tooth (29.5)
  • idiopathic inflammatory myopathies (25.0).

Since 2000, overall prevalence of NMD grew by 63%, with the largest increase seen in those aged 65 and over, peaking in those aged 80–84.

An increasing trend in prevalence was observed for both sexes (66% in males and 61% in females).

However, overall incidence remained constant, except for myasthenia gravis, which underwent an increase since 2008.

By contrast, incidence of new cases of muscular dystrophy declined over the same period.

‘Overstretched services’

Catherine Woodhead, chief executive officer of MDUK, commented: ‘No wonder neuromuscular specialist services are so stretched. They already work tirelessly to meet the complex needs of people with muscle-wasting conditions, and this research shows clearly that they need further resources.’

The charity called for action to help the NHS and the social care system meet the needs of an ageing demographic with NMD. ‘This growing population needs support, and they are often overlooked,’ she said.

Last year, MDUK published a report, Shining the Light, which set out short- and long-term priorities for improving care for people with a muscle-wasting condition.

This article originally appeared on Medscape, part of the Professional Medscape Network.


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