Current practice of delivering bad news of amyotrophic lateral sclerosis diagnosis in Asian and Oceanian countries: an international survey from a neurologist’s perspective

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, incurable, and fatal disease caused by motor neuron degeneration. When delivering an ALS diagnosis, it is crucial to provide full information on the prognosis, latest treatment, and unbiased life-prolonging measures. However, the current situation and international disparities remain unclear. The present study aimed to examine current practices and perspectives on delivering ALS diagnosis in Asian and Oceanian countries. An international online survey comprising 73 questions was conducted among neurologists and physicians treating patients with ALS in Asia and Oceania to evaluate current practices and perspectives regarding the delivery of an ALS diagnosis. The association between the current practice, personal experiences of respondents and the healthcare access and quality (HAQ) index of each country was evaluated. In addition, personal experiences in delivering ALS diagnosis were gathered and qualitatively analyzed. A total of 424 respondents from 10 countries in Asia and Oceania completed the survey. Of them, 64% were male, the median age was 42 years, and the median experience of delivering an ALS diagnosis was 11 years. Approximately half of the respondents worked in special hospitals or ALS centres. In countries with high HAQ scores, patients tended to visit hospitals at the earlier stages of the disease than those in countries with low HAQ scores. Overall, working in a country with a high HAQ score was independently associated with meeting good standard practice, according to the ALS guideline. Although 85% of the respondents perceived the delivery of an ALS diagnosis as difficult due to lack of time, compassion fatigue, or cultural barriers, only 13% had received training in delivering such a diagnosis. Furthermore, 88% of the respondents felt that delivering an ALS diagnosis is stressful; however, only 40% responded that they had no effective strategies to deal with emotional distress. The present survey, the first multinational survey conducted across Asian and Oceanian countries, showed the diversity of the current practice and perspectives of delivering ALS diagnosis in Asian and Oceanian regions. To enhance diagnostic communication in these regions, it is crucial to develop international training modules for delivering ALS diagnosis. In addition, learning stress management strategies may be necessary.