“…but I know something’s not right here”: Exploring the diagnosis and disclosure experiences of persons living with ALS

Background Amyotrophic Lateral Sclerosis (ALS), an incurable motor neuron disease, primarily affects those between the ages of 60-79, and has an approximate post-diagnosis life--expectancy of only two to five years. The condition has an unpredictable but ultimately terminal trajectory that poses a number of challenges for patients, caregivers and healthcare providers. While the diagnosis and disclosure are critical periods for intervention and support, knowledge regarding the relational, communicational and psychodynamic forces that occur within the process of diagnostic disclosure is relatively limited. Objectives The purpose of this study was to explore the experiences of persons living with ALS in the diagnosis and disclosure of the condition, and the experiences of their caregivers. Methods We conducted a focus group and in-depth individual interviews with Canadians living with ALS (n = 9), family caregivers (n = 7), a professional caregiver (n = 1), and one past caregiver (1). The interviews were transcribed, cleaned, and anonymized, and then entered into NVivo 11 for thematic analysis. Results Participants discussed the diagnosis process, including the inklings and subtle changes prior to diagnosis, attempts at self-diagnosis, and the lengthy assessment process. Time was also a consideration in the disclosure process, in which participants shared how the diagnosis disclosure was the product of longstanding conversations with their care providers. It was described as rarely a shock to finally have confirmation. Additionally, participants shared their information seeking strategies and needs for a diagnosis that, for them, typically came with insufficient information on the disease, prognosis, and next steps. Significance This project serves as an initial step in bridging the relevant gaps in our knowledge and understanding towards improved patient-centered care practices in the diagnosis and disclosure of ALS. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement The author(s) received no specific funding for this work. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: University of Waterloo Office of Research Ethics [ORE # 22512]. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes Data are contained within the manuscript.