ALS’s heterogeneous disease presentation and progression identifies a need for individualized education for patients (Chu & Oh, 2020). Most of the current educational resources are generic and can contribute to overwhelm.
Our objective was to provide resources specific to an individual’s disease stage to minimize distress associated with irrelevant symptom management while also being inclusive of caregivers.
This EssentiALS tool provides a questionnaire that is adapted from the validated ALSFRS and three supplemental questions, to identify each user’s current educational needs.The tool was developed from multidisciplinary and user-centered approaches, clinic expertise, literature review, and patient feedback. Videos and written materials were created and categorized to apply to the questionnaire responses. An embedded algorithm generates personalized educational materials across eleven disease specific topic areas. It provides specific information for users and caregivers to navigate a new diagnosis, conversations with work, transitions during disease progression, and physical changes.
The EssentiALS tool is fully functional and available online.The interface is optimized for accessibility, featuring larger buttons for users with hand weakness or those utilizing eye-gaze devices. The algorithm provides individualized educational materials including video demonstrations that integrate realistic settings in and outside of the home as well as a simulation lab for feeding tube training. The tool is expected to reinforce personalized education, fill knowledge gaps, reduce anxiety, and provide a single accessible platform for patients. Preliminary patient feedback from our patients and community include improved comfort in using durable medical equipment and satisfaction with resources to train caregivers both in the home and at care facilities.
EssentiALS is an interactive platform that provides easily accessible personalized resources from a multidisciplinary approach. Future studies will focus on evaluating patient and caregiver perception of the tool, its influence on quality of life, understanding of durable medical equipment, and to identify specific educational needs.
Chu, H. S., & Oh, J. (2020). Information Needs and Preferences of Family Caregivers of Patients With Amyotrophic Lateral Sclerosis. The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses, 52(5), 207–213. https://doi.org