Community awareness and knowledge of amyotrophic lateral sclerosis: a cross-sectional study in the Northern Border Region of Saudi Arabia
Raed AlRuwaili, Manair H. Alenzi, Mozon H. Alenzi, Abdulrahman Omar A. Alali, Samiah N. Aljohani, Randa F. Alenzi, Baraah Abu Alsel, Manal S. FawzyBackground
Public awareness of amyotrophic lateral sclerosis (ALS) is limited worldwide, with potential implications for timely recognition, care seeking, and social support. Data from the Northern Border Region of Saudi Arabia are lacking. This study aims to assess community awareness and knowledge of ALS and identify predictors of good awareness among adults in the Northern Border Region of Saudi Arabia.
Methods
A cross-sectional survey of 1,277 adults used a structured self-administered questionnaire covering sociodemographic characteristics, general awareness, knowledge, attitudes, personal experience, and information sources. Awareness was scored from 16 knowledge items and categorized as good (≥ 60%) or poor (<60%). Descriptive statistics, chi-square tests with Cramér’s V, and multivariable logistic regression were applied; model performance was assessed using the Hosmer–Lemeshow test and area under the receiver operating characteristic (ROC) curve (AUC).
Results
Participants were mainly young to middle-aged, female, and university-educated, and most worked outside the health field. Although 45.2% had heard of ALS, 90.8% showed poor awareness, while only 9.2% showed good awareness. Uncertainty predominated regarding prognosis, risk groups, neuroanatomical involvement, non-motor symptoms, curability, and diagnostic difficulty. Age and occupation were associated with awareness in bivariate analyses but lost significance after adjustment. Never having heard of ALS markedly reduced the odds of good awareness (adjusted odds ratio (AOR) = 0.167, 95% confidence interval (CI) [0.097–0.288], p < 0.001), while using the internet and healthcare sources was associated with higher awareness. The model showed good calibration (Hosmer–Lemeshow p = 0.891) and discrimination (AUC = 0.820).
Conclusions
Community awareness and knowledge of ALS in this region are poor, underscoring the need for targeted digital and healthcare-based educational initiatives to improve ALS literacy.