Abstract
Amyotrophic Lateral Sclerosis (ALS) is a progressive, life-limiting motor neuron disease withonset typically between 50 and 65 years of age. In addition to physical manifestations of disease, a diagnosis of ALS can have a significant psychological impact on patients and their families. Previous research shows that parents struggle with deciding how much to tell their offspring about their diagnosis, and there is limited published guidance for how to best discuss one’s diagnosis of ALS with their family. This study aimed to collect the opinions of individuals that have/had a parent with ALS to better understand their views around conversations with their parent(s) about their diagnosis of ALS. This study utilized an anonymous Qualtrics survey, which was hosted online from November 2022 to January 2023. Out of 45 respondents, 57.8% felts their parent communicated the right amount of information about their diagnosis, 40% felt their parents communicated too little, and only 2.2% felt their parent communicated too much information about their ALS diagnosis. Our findings show that most individuals with a parent with ALS desired more open communication especially in relation to their parent’s physical and emotional health, as well as discussions about what ALS is and what they should expect from the diagnosis. Responses showed that the manner in which this information was communicated to them played a role in how effective their family conversations were for them. Participants reported getting most of their information about what ALS is and what it means for them and their family from either the internet or a healthcare provider (HCP). This data suggests that HCPs could provide practical information about ALS and encourage patients to share this with family members as a way to facilitate the family conversations about their diagnosis. Furthermore, our survey revealed that participants felt that they had a good understanding of the inheritance of ALS, but further responses suggested unexplained discrepancies in their answers about their experiences with genetic testing. Given the complexities of ALS and the impact of genetics on available therapies, further studies should explore this continuously developing area of care for the offspring of individuals with a diagnosis of ALS.