Abstract
Background: Clinical stage in amyotrophic lateral sclerosis (ALS) can be assigned using King’s staging with a simple protocol based on the number of CNS regions involved and the presence of significant nutritional or respiratory failure. It is important that the assigned clinical stage matches expectations, and generally corresponds with how a health care professional would intuitively stage the patient. We therefore investigated the relationship between King’s clinical ALS stage and ALS stage as intuitively assigned by health care professionals. Methods: We wrote 17 case vignettes describing people with ALS at different disease stages from very early limited disease involvement through to severe, multi-domain disease. During two workshops, we asked health care professionals to intuitively stage the vignettes and compared the answers with the actual King’s clinical ALS stage. Results: There was a good correlation between King’s clinical ALS stage and intuitively assigned stage, with a Spearman’s Rank correlation coefficient of 0.64 (p < 0.001). There was no difference in the intuitive stages assigned by practitioners of different types or at different levels of experience. Conclusions: Across a spectrum of ALS scenarios, King’s clinical ALS stage corresponds to intuitive ALS stage as assigned by a range of health care professionals.
Highlights
Amyotrophic lateral sclerosis (ALS), otherwise known as motor neuron disease (MND), is a neurological disease characterized by progressive loss of upper and lower motor neurons, resulting in progressive muscle weakness and eventual paralysis, with death usually resulting from neuromuscular respiratory failure [1,2]
It is important that clinical staging matches expectations, and corresponds with how a health care professional would intuitively stage a patient based on their clinical experience with the disease, so that the meaning of any given stage can be interpreted
We have demonstrated that the King’s clinical staging system correlates well with clinical stage assigned intuitively by health care professionals
Summary
Amyotrophic lateral sclerosis (ALS), otherwise known as motor neuron disease (MND), is a neurological disease characterized by progressive loss of upper and lower motor neurons, resulting in progressive muscle weakness and eventual paralysis, with death usually resulting from neuromuscular respiratory failure [1,2]. Clinical stage in amyotrophic lateral sclerosis (ALS) can be assigned using King’s staging with a simple protocol based on the number of CNS regions involved and the presence of significant nutritional or respiratory failure. It is important that the assigned clinical stage matches expectations, and generally corresponds with how a health care professional would intuitively stage the patient. We investigated the relationship between King’s clinical ALS stage and ALS stage as intuitively assigned by health care professionals. We asked health care professionals to intuitively stage the vignettes and compared the answers with the actual King’s clinical ALS stage. Conclusions: Across a spectrum of ALS scenarios, King’s clinical ALS stage corresponds to intuitive ALS stage as assigned by a range of health care professionals
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