Assessing amyotrophic lateral sclerosis prevalence in Norway from 2009 to 2015 from compulsory nationwide health registers

Nakken, Ola; Lindstrøm, Jonas Christoffer; Tysnes, Ole‐Bjørn; Holmøy, Trygve

doi:10.1080/21678421.2017.1418004

Cited by 21 publications

(24 citation statements)

References 34 publications

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“…The prevalence of ALS in mainland China presented a relatively stable trend during the study period. This finding was in accordance with results from Taiwan, Iceland and Norway but not consistent with the increase in prevalence in Italy and Germany 5 32–35. The relatively short period of our study might limit the possibility of detecting a significant trend; however, the stable prevalence and large number of patients with ALS should not be ignored from the perspective of disease prevention and treatment.…”

Section: Discussionsupporting

confidence: 87%

Incidence and prevalence of amyotrophic lateral sclerosis in urban China: a national population-based study

Chen

Wang

et al. 2020

J Neurol Neurosurg Psychiatry

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ObjectiveAmyotrophic lateral sclerosis (ALS) is a severe neurodegenerative disease and information on disease burden of ALS in mainland China was limited. We aimed to estimate the prevalence and incidence of ALS in China.MethodsWe used 2012–2016 data from China’s Urban Employee Basic Medical Insurance and Urban Residence Basic Medical Insurance, covering approximately 0.43 billion individuals. ALS cases were identified by the primary diagnosis (International Classification of Diseases code or text of diagnosis) in the insurance database.ResultsThe crude prevalence and incidence in 2016 were 2.91 per 100 000 person-years (95% CI 2.31 to 3.58) and 1.65 (95% CI 1.33 to 2.01), respectively. The standardised prevalence and incidence based on 2010 Chinese census data were 2.97 (95% CI 2.91 to 3.03) and 1.62 (95% CI 1.58 to 1.67), respectively. The annual prevalence between 2013 and 2016 remained relatively constant, ranging from 2.91 (95% CI 2.31 to 3.58) in 2016 to 3.29 (95% CI 2.51 to 4.17) in 2014 (linear regression: β=−0.129, p=0.104). Both rates peaked in the group aged 75–79 years.ConclusionsThe prevalence and incidence of ALS in mainland China were lower than those in developed countries, and maintained a relatively stable trend. The age at onset and age at diagnosis for ALS patients were younger than those in developed countries. Further research is expected to clarify the potential pathophysiological mechanism of ALS.

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Section: Discussionsupporting

confidence: 87%

Incidence and prevalence of amyotrophic lateral sclerosis in urban China: a national population-based study

Chen

Wang

et al. 2020

J Neurol Neurosurg Psychiatry

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“…In other, older studies, median survival times after tracheostomy were shorter, from 0.7 to 6.2 years [10], [19], [17], [20]. Internationally, the majority of ALS HIMV patients have been male [16], [19], [18], but in our study the gender distribution was equal. HIMV treatment was started electively in only 34% of our patients.…”

Section: Discussioncontrasting

confidence: 49%

“…Their survival was long; the mean treatment duration for all motor neuron patients was 7.7 years and for those who died 9.0 years. Internationally, ALS prevalence was about 5.2-7.6/100 000 [14], [15], [16]. In Western countries, 1.5-5% of ALS patients underwent tracheostomy [17], [18], except in Italy, where the figure was 10.6% [19], and in Japan, even higher, about 30-39% [10], [18].…”

Section: Discussionmentioning

confidence: 99%

Home invasive mechanical ventilation in Finland in 2015–2019

et al. 2020

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IntroductionThe prevalence of long-term invasive mechanical ventilation via tracheostomy in chronic respiratory insufficiency is largely unknown. We aimed to clarify prevalence and aetiology of the use of home invasive mechanical ventilation (HIMV) in Finland in 2015–2019.MethodsInformation on HIMV patients was collected yearly from all Finnish Hospital District patient registries between 1 January 2015 and 1 January 2019. Data included underlying diagnosis, time from diagnosis to HIMV initiation, treatment length, mortality and basic socio-demographic data.ResultsIn 2015, we had 107 HIMV patients. During the follow-up we received 34 new patients (24.1%) and 46 patients (32.6%) died. In 2019, we had 95 HIMV patients and the prevalence in Finland was 2.0/100 000. The most common diagnoses were motor neuron disease (29.1%) and spinal cord injuries (19.9%). Mean duration of HIMV among all patients on 1 January 2019 was 12.3 years and among deceased patients 11.2 years. Treatment durations ranged from motor neuron disease patients’ 7.7 years to post-polio syndrome patients’ 47.3. Most patients (81.6%) used HIMV 24 h·day−1.ConclusionsHIMV is a rare, long-lasting treatment, most often used in chronic hypoventilation caused by chronic neurological disease. Based on our 4 year follow-up the prevalence of HIMV seems to be diminishing in Finland. Treatment duration and survival vary greatly depending on the underlying diagnosis. Most of the patients were totally dependent on HIMV, requiring 24 h care.

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“…Another study, focusing on intracranial hemorrhage (ICH) in Trøndelag, 8.8% registered with ICH in the NPR showed to be false positive (Øie et al, ). In a study of amyotrophic lateral sclerosis (ALS), data from the NPR was validated for Akershus—Hordaland County, showing that 11% of individuals with at least one ALS‐related entry in the NPR had an incorrect diagnosis (Nakken, Lindstrøm, Tysnes, & Holmøy, ). These results are in accordance with our findings.…”

Section: Discussionmentioning

confidence: 99%

Validation of the multiple sclerosis diagnosis in the Norwegian Patient Registry

et al. 2019

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BackgroundHealth registries may yield important data for epidemiological studies. However, in order to be a valuable source for information, the registered data have to be correct.ObjectivesThe aim of the study was to validate data from the Norwegian Patient Registry (NPR) regarding multiple sclerosis (MS).Materials and MethodsWe obtained data on individuals residing in Nordland County and registered with a MS diagnosis in the NPR or in local hospital records. The NPR data included a unique 11‐digit personal identity number that made it possible to identify the individuals medical records. For each individual registered with MS in the NPR, the hospital record was scrutinized in order to confirm or rule out the diagnosis.ResultsIn Nordland County, 657 individuals had MS 1 January 2017. Of these, 637 were recorded with a correct diagnosis of MS in the NPR, while 59 were recorded incorrectly. Incorrect registration was due to a diagnosis that did not fulfill the diagnostic criteria, later investigation had ruled out MS or it was an error in the diagnostic code registration process. Twenty individuals were not registered with MS in the NPR. These were patients who received their diagnosis before data in the NPR were person identifiable (before 2008), and who later had no MS‐registered contact with public specialist healthcare services. The sensitivity is 0.97, and the positive predictive value is 0.92.ConclusionData from the NPR gave a good estimate of the occurrence of MS, but nearly one in 10 registered diagnoses was not correct.

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Assessing amyotrophic lateral sclerosis prevalence in Norway from 2009 to 2015 from compulsory nationwide health registers

Abstract: Norwegian compulsory health registers provide reliable tools for ALS surveillance, and suggest gender and regional differences in survival after diagnosis.

Cited by 21 publications

References 34 publications

Incidence and prevalence of amyotrophic lateral sclerosis in urban China: a national population-based study

Incidence and prevalence of amyotrophic lateral sclerosis in urban China: a national population-based study

Home invasive mechanical ventilation in Finland in 2015–2019

Validation of the multiple sclerosis diagnosis in the Norwegian Patient Registry

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