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. 2022 Aug;23(5-6):363-371.
doi: 10.1080/21678421.2021.2016837. Epub 2022 Feb 1.

Analysis of incidence of motor neuron disease in England 1998-2019: use of three linked datasets

Judith M Burchardt  1 , Xue W Mei  1 , Tom Ranger  1 , Christopher J McDermott  2 , Aleksandar Radunovic  3 , Carol Coupland  4 , Julia Hippisley-Cox  1
Affiliations

Analysis of incidence of motor neuron disease in England 1998-2019: use of three linked datasets

Judith M Burchardt et al. Amyotroph Lateral Scler Frontotemporal Degener. 2022 Aug.

Abstract

Objective: This study uses three linked datasets to provide an estimate of incidence of motor neuron disease (MND) in England from 1998 to 2019. Comparison is made to previous British studies. It examines age at diagnosis and ethnicity of those affected.Methods: The literature was searched for studies of MND incidence in Great Britain from 1995 to date. The QResearch and linked Hospital Episode Statistics and Death register databases were searched from 1998 to 2019 for cases of MND, and incidence calculated from 16.8 million adults and 112 million adult years of data.Results: We found 6437 adults with a diagnosis of MND giving an incidence of MND of 5.69/100,000 person years (95% CI 5.51-5.88); 6.57 (6.41-6.99) in men and 4.72 (4.49-4.97) in women when age-standardized to the 2011 UK population. The median age of diagnosis was 72 years. Peak incidence occurred in the 80-84 year age group in men and 75-79 in women. Age-standardized incidence was as high in Bangladeshi, Black Caribbean, Indian, other Asian and Pakistani people as in White people. Black African and Chinese people had a lower incidence.Conclusion: The use of three linked national datasets captured 33% more people than a primary care dataset alone. Patients were older than in previous studies and rates were high in all ethnic groups studied except Black African and Chinese people. We present the highest incidence of MND reported globally in the past 50 years. Methodological differences may in part explain differences with previous reports. The use of national datasets may have captured additional MND patients with serious comorbidities who have not seen a neurologist before death. A limitation of this approach is that unlike population registers, which minimize false positive diagnosis by neurologist review of each patient, we cannot review diagnosis for individuals as data are anonymized.

Keywords: England; Epidemiology; QResearch; amyotrophic lateral sclerosis; incidence; motor neuron disease.

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Conflict of interest statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of this article.

Figures

Figure 1
Figure 1
Data sources for MND cases – GP records, Hospital Episode Statistics and Death Certificates 1998–2019.
Figure 2
Figure 2
Crude MND Incidence/100,000 adult years in England 1998–2019.
Figure 3
Figure 3
Crude incidence by age at study entry for MND/100,000 adult years by age and sex in England 1998–2019.
Figure 4
Figure 4
Age-standardized incidence MND/100,000 person years in England by self-reported ethnicity 1998–2019.
See this image and copyright information in PMC

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