Development of a shared decision-making aid for bulbar symptom management in ALS
Aperçu du projet
Bulbar disease, which affects speech and swallowing functions, is considered to be one of the most debilitating aspects of ALS by patients. It is characterized by a rapid progression, short survival after diagnosis, and poorer quality of life. Clinical management of bulbar symptoms is focused on optimizing patients’ function and quality of life for as long as possible through early care planning. However, treatment decisions in bulbar disease are highly preference-sensitive (e.g., use of AAC devices, gastrostomy tube placement) and often delayed to the point where symptoms have fully manifested and there are multiple competing care priorities. Decision aids are best positioned to facilitate preference-sensitive decisions and have been found to improve professional-patient communication about treatment options and preferences, resulting in decisions that better align with patient needs. While decision aids are rapidly emerging in ALS, currently, there are no aids that exist to support shared decision-making around bulbar symptom management. The goal of this research is to develop a tool to facilitate decision-making conversations about bulbar symptom management between patients, their families, and healthcare professionals. Three specific aims will be addressed: (1) to understand the needs and context of prospective users for decision-making in bulbar symptom management; (2) to develop and refine the prototype of the shared decision-making (SDM) aid for bulbar symptom management in ALS; and (3) to examine the feasibility of the aid to facilitate shared decision-making at the multidisciplinary ALS clinic by users. The aid will be considered acceptable if it is rated as “quite a bit” acceptable by 80% of the users. The aid will be considered usable if it shows “good” usability in 80% of users. This work will provide an evidence-informed and standardized approach to SDM that is specific to bulbar symptom management in ALS. This SDM aid will reflect a person-centred approach to care that can support patients, families, and healthcare professionals (HCPs) to make decisions that better reflect the needs of patients and their families in their daily lives.
Chef d'équipe
Anna Huynh , Sunnybrook Research Institute
Partenaire et Donateurs
ALS Society of Canada