Learning a Distance for the Clustering of Patients with Amyotrophic Lateral Sclerosis
This work addresses the need for personalized care in ALS by improving patient clustering, though it is incremental as it builds on existing clustering methods with new distance measures.
The authors tackled the problem of clustering patients with Amyotrophic Lateral Sclerosis (ALS) to enable personalized care by proposing a clustering approach that uses a disease progression declarative score and integrates medical expertise through multiple descriptive variables. Their method outperformed state-of-the-art techniques in survival analysis on a dataset of 353 ALS patients while achieving comparable silhouette scores.
Amyotrophic lateral sclerosis (ALS) is a severe disease with a typical survival of 3-5 years after symptom onset. Current treatments offer only limited life extension, and the variability in patient responses highlights the need for personalized care. However, research is hindered by small, heterogeneous cohorts, sparse longitudinal data, and the lack of a clear definition for clinically meaningful patient clusters. Existing clustering methods remain limited in both scope and number. To address this, we propose a clustering approach that groups sequences using a disease progression declarative score. Our approach integrates medical expertise through multiple descriptive variables, investigating several distance measures combining such variables, both by reusing off-the-shelf distances and employing a weak-supervised learning method. We pair these distances with clustering methods and benchmark them against state-of-the-art techniques. The evaluation of our approach on a dataset of 353 ALS patients from the University Hospital of Tours, shows that our method outperforms state-of-the-art methods in survival analysis while achieving comparable silhouette scores. In addition, the learned distances enhance the relevance and interpretability of results for medical experts.