Development of a Tool for Community Deployment That Detects ALS and Other Neurodegenerative Diseases
Priya Nigam1, Kaitlyn Naughton1, Valeria Castro-Ariza1, Nadia Mansoor1, Latoya Weaver1, Luisa Enriquez1, Molly Cincotta1, Terry Heiman-Patterson1
1Temple University Lewis Katz School of Medicine
Objective:
To develop a tool for early detection of neurodegenerative diseases that can be self administered
Background:
Better identification of at-risk individuals and care access for racial and ethnic minorities is needed for Neurodegenerative Diseases (NDDs) including Amyotrophic Lateral Sclerosis(ALS), Alzheimer's Disease(AD) and Parkinson's Disease(PD). There are currently no widely accepted, effective, rapid, and easily-administered screening tools that can be deployed into the community and enable early disease detection when treatments may be most effective.
Design/Methods:
The Neurodegenerative Disease Assessment (NDA) Tool was designed as a short electronic survey with three sets of 4-6 questions regarding possible symptoms for each of the three NDDs (ALS, AD, or PD). This survey was self-administered followed by administration by health care professionals at community settings and health clinics. For those participants answering positively in any of the three sections, a focused physical examination was performed and if suggestive of disease, the participant was referred for a complete neurologic evaluation.
Results:
35 participants (aged 18-85) completed the self and professional-administered NDA tool. 69% had identical results between administrations. The difference between administrations was not statistically significant among all participants (t= -1.9272, p = 0.06234) and among the subset with non-identical results (t=-2.0066 p = 0.06097). Mismatches were related to shaking and gait(PD,55%), daily tasks and unusual behaviors(AD,55%), and weakness and pseudobulbar affect(ALS,31%). False positivity was highest (89%) with self-administration of AD questions. Physical exam positivity was 31.7% more likely in participants with identical results.
Conclusions:
The NDA tool produces similar results with user and healthcare professional administration and holds promise for self-administration. Further research is necessary to optimize the survey questions to avoid false positive screening. We will then be able to determine which positive responses are most predictive of actual disease, enabling the development of a weighted score that can be used for appropriate referral to specialty care.
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