LAUSR

Abstract Background Novel coronavirus disease (COVID‐19) outbreaks have dramatically changed lifestyles, with various effects on the physical and mental health of families and children with various childhood‐onset neurological diseases. A questionnaire survey was conducted to identify family‐specific issues and needs of patients with congenital insensitivity to pain with anhidrosis (CIPA) during major changes in their daily lives due to the COVID‐19 outbreaks. Methods An anonymous questionnaire was sent to 56 families that were members of the Association of Patients and Families of CIPA in Japan between October and November 2020, the first 2 months of the third outbreak. Results Thirty‐eight families (67.2% response rate) responded to the questionnaire. The current concerns of the parents were (1) difficulty in predicting the future (19 parents, 50%), (2) household and work concerns (8 parents, 21.1%), and (3) whether they would become infected (25 parents, 65.8%). Fifteen families indicated stress due to increased time together (stress+ group), and 10 families had a better understanding of each other due to increased time together. New sleep disturbances and behavioral changes were observed in approximately 20% and 50% of patients with CIPA, respectively. No single factor could explain family stress. There were also free descriptions of the importance of peer support, connections with experts, and prompt responses for resolution. Conclusions Each family has its own way of coping with multiple factors that contribute to the stress of the patient and family. A long‐established resilience to the disease proved effective during this pandemic.