期刊
AMYOTROPHIC LATERAL SCLEROSIS AND FRONTOTEMPORAL DEGENERATION
卷 15, 期 3-4, 页码 279-284出版社
INFORMA HEALTHCARE
DOI: 10.3109/21678421.2014.897357
关键词
Epidemiology; clinical trials; survival
资金
- United Kingdom, Medical Research Council and Economic and Social Research Council
- National Institute for Health Research (NIHR) Dementia Biomedical Research Unit at South London
- Maudsley NHS Foundation Trust and King's College London
- European Community's Health Seventh Framework Programme [FP7/2007-2013, 259867]
- ESRC [ES/L008238/1] Funding Source: UKRI
- MRC [G0500289, MC_G1000733, G0900688, MR/K01014X/1, G0600974] Funding Source: UKRI
- Economic and Social Research Council [ES/L008238/1] Funding Source: researchfish
- Medical Research Council [MC_G1000733, G0900688, MR/K01014X/1, MR/L501529/1, G0500289B, G0500289, G0600974] Funding Source: researchfish
- Motor Neurone Disease Association [Turner/Jan13/944-795] Funding Source: researchfish
ALS is a progressive neurodegenerative disease. The stage of disease reached can be described using a simple system based on the number of central nervous system regions involved. Historically, datasets have not attempted to record clinical stage, but being able to re-analyse the data by stage would have several advantages. We therefore explored the possibility of using an algorithm based on the revised ALS Functional Rating Scale (ALSFRS-R), which is commonly used in clinical practice, to estimate clinical stage. We devised an algorithm to convert ALSFRS-R score into clinical stage. ALSFRS-R domains were mapped to equivalent CNS regions. Stage 4 is reached when gastrostomy or non-invasive ventilation is needed, but as a proxy we used provision. We collected ALSFRS-R from clinic visits, and compared the estimation of clinical stage from the ALSFRS-R with the actual stage. Results showed that the agreement between staging by the two methods was excellent with an intraclass correlation coefficient of 0.92 (95% confidence interval 0.88-0.94). There was no systematic bias towards over-staging or under-staging using the algorithm. In conclusion, we have shown that clinical stage in ALS can be reliably estimated using the ALSFRS-R in historical data and in current data where stage has not been recorded
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