Prevalence and incidence of neuromuscular conditions in the UK between 2000 and 2019: A retrospective study using primary care data.

Iain M Carey,Umar A R Chaudhry,Niranjanan Nirmalananthan,Tess Harris,Emma Banchoff,Stephen Dewilde,Derek G Cook,Julie Dumonceaux

doi:10.1371/journal.pone.0261983

Iain M Carey, Umar A R Chaudhry + Show 6 more

Open Access

https://doi.org/10.1371/journal.pone.0261983

Copy DOI

Abstract

In the UK, large-scale electronic primary care datasets can provide up-to-date, accurate epidemiological information on rarer diseases, where specialist diagnoses from hospital discharges and clinic letters are generally well recorded and electronically searchable. Current estimates of the number of people living with neuromuscular disease (NMD) have largely been based on secondary care data sources and lacked direct denominators. To estimate trends in the recording of neuromuscular disease in UK primary care between 2000-2019. The Clinical Practice Research Datalink (CPRD) database was searched electronically to estimate incidence and prevalence rates (per 100,000) for a range of NMDs in each year. To compare trends over time, rates were age standardised to the most recent CPRD population (2019). Approximately 13 million patients were actively registered in each year. By 2019, 28,230 active patients had ever received a NMD diagnosis (223.6), which was higher among males (239.0) than females (208.3). The most common classifications were Guillain-Barre syndrome (40.1), myasthenia gravis (33.7), muscular dystrophy (29.5), Charcot-Marie-Tooth (29.5) and inflammatory myopathies (25.0). Since 2000, overall prevalence grew by 63%, with the largest increases seen at older ages (≥65-years). However, overall incidence remained constant, though myasthenia gravis incidence has risen steadily since 2008, while new cases of muscular dystrophy fell over the same period. Lifetime recording of many NMDs on primary care records exceed current estimates of people living with these conditions; these are important data for health service and care planning. Temporal trends suggest this number is steadily increasing, and while this may partially be due to better recording, it cannot be simply explained by new cases, as incidence remained constant. The increase in prevalence among older ages suggests increases in life expectancy among those living with NMDs may have occurred.

Highlights

Neuromuscular disease (NMD) comprises a group of individually rare conditions which affect muscle functioning [1]
Overall incidence remained constant, though myasthenia gravis incidence has risen steadily since 2008, while new cases of muscular dystrophy fell over the same period
Lifetime recording of many NMDs on primary care records exceed current estimates of people living with these conditions; these are important data for health service and care planning

Summary

Introduction

Neuromuscular disease (NMD) comprises a group of individually rare conditions which affect muscle functioning [1]. While there has been a large increase in the number of people recorded as dying with NMDs in England [7], accurate estimates for how many are living with a NMD in the UK have been lacking and national data have long been sought [8]. A better understanding of the epidemiology of NMD would help estimate both current and potential future healthcare burdens, especially if the number of people living with NMD is rising [9]. Current estimates of the number of people living with neuromuscular disease (NMD) have largely been based on secondary care data sources and lacked direct denominators

Methods

Results

Conclusion