Development of a shared decision-making aid for bulbar symptom management in ALS

Bulbar symptoms, impacting speech and swallowing, are among the most challenging aspects of ALS. Early care planning, especially for bulbar symptoms, is vital to maintain function and quality of life for as long as possible. However, treatment decisions regarding bulbar symptoms heavily rely on personal preference, such as the use of augmentative and alternative communication (AAC) devices and feeding tube placement. These choices are often postponed due to the complexities of the disease and their personal nature, causing individuals with bulbar ALS to delay these decisions until symptoms are fully evident, resulting in multiple competing care priorities.

Decision aids are valuable tools for facilitating preference-sensitive decisions and improving communication between healthcare professionals and patients regarding treatment options. Despite their growing use in the context of ALS, there remains a gap in resources available to support shared decision-making in the management of bulbar symptoms.

With this award, Anna seeks to develop a specialized tool to facilitate decision-making conversations about bulbar symptom management between individuals with ALS, their caregivers, and healthcare professionals. Through interviews, Anna will gain a better understanding of the decision-making process for bulbar symptom management, allowing her to create a tool that considers individual needs and values. She will then develop and refine a prototype decision-making aid to be tested in an ALS clinic, collecting real-world feedback, and assessing user experience.

This work seeks to provide a well-informed and standardized approach to decision-making tailored to the management of bulbar symptoms in ALS. Decision-aids have also been shown to improve professional-patient interactions and ensure decisions align with individual and family values. Thus, this tool has the potential to significantly enhance care for those living with bulbar ALS.