Communicating the diagnosis: a survey of patients with amyotrophic lateral sclerosis and their families in Japan

Objective: To assess the needs of patients with amyotrophic lateral sclerosis (ALS) and their families when being communicated the diagnosis. Methods: We held a nationwide webinar in September 2020, titled “ALS Café”, and distributed a self-report questionnaire to participants. Patients: This cross-sectional study included 56 respondents (patients, n = 32; family members, n = 24). Results: Of the 56 respondents, 47 (84%) reported being anxious when they were communicated their diagnosis. The average time allocated for communicating the diagnosis was 36.3 ± 25.6 min, and 30% of respondents believed that insufficient time was allocated. Nearly half of the respondents were communicated their diagnosis by one physician, and 57% of the respondents received their diagnosis in one session. Approximately 80% of respondents received information about ventilators when they were being communicated their diagnosis, but most patients did not want to receive this information at that time. The anxious group tended to answer that the time to communicate the diagnosis was short. Meanwhile, all respondents in the mildly anxious group were provided with one or more information about the supportive contents along with the diagnosis. Moreover, in Japan, many patients with ALS and their families desire the legalization of euthanasia, which might affect decision-making. Conclusions: This study shows that a longer amount of time spent communicating the diagnosis and provision of descriptions needed by patients and their families are important. This can help clinicians understand what the patient requires while being communicated their diagnosis.