{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,7,30]],"date-time":"2025-07-30T12:43:16Z","timestamp":1753879396282,"version":"3.41.2"},"reference-count":19,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,2,10]],"date-time":"2023-02-10T00:00:00Z","timestamp":1675987200000},"content-version":"vor","delay-in-days":40,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatrics International"],"published-print":{"date-parts":[[2023,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Novel coronavirus disease (COVID\u201019) outbreaks have dramatically changed lifestyles, with various effects on the physical and mental health of families and children with various childhood\u2010onset neurological diseases. A questionnaire survey was conducted to identify family\u2010specific issues and needs of patients with congenital insensitivity to pain with anhidrosis (CIPA) during major changes in their daily lives due to the COVID\u201019 outbreaks.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>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\u2009months of the third outbreak.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Thirty\u2010eight 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 (eight parents, 21.1%), and (3) whether they would become infected (25 parents, 65.8%). Fifteen families indicated stress due to increased time together (stress\u2009+\u2009group), 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Each family has its own way of coping with multiple factors that contribute to the stress of the patient and family. A long\u2010established resilience to the disease proved effective during this pandemic.<\/jats:p><\/jats:sec>","DOI":"10.1111\/ped.15415","type":"journal-article","created":{"date-parts":[[2022,11,13]],"date-time":"2022-11-13T06:48:29Z","timestamp":1668322109000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Impact of the coronavirus pandemic on families of patients with congenital insensitivity to pain with anhidrosis"],"prefix":"10.1111","volume":"65","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8299-4867","authenticated-orcid":false,"given":"Masaya","family":"Kubota","sequence":"first","affiliation":[{"name":"Department of Pediatrics Shimada Ryoiku Medical Center for Challenged Children  Tokyo Japan"},{"name":"Division of Neurology National Center for Child Health and Development  Setagaya\u2010ku Japan"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nobuhiko","family":"Haga","sequence":"additional","affiliation":[{"name":"Rehabilitation Services Bureau National Rehabilitation Center for Persons with Disabilities  Tokorozawa Japan"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,2,10]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2021.626456"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph17249519"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.yebeh.2020.107527"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/epi4.12464"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2020.103790"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41598-021-82743-x"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.35803"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/ped.12538"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.01.023"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/ng0896-485"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1038\/nature05413"},{"volume-title":"Guidelines for the comprehensive treatment and care of congenital insensitivity to pain with anhidrosis","year":"2018","key":"e_1_2_9_13_1"},{"key":"e_1_2_9_14_1","doi-asserted-by":"publisher","DOI":"10.5664\/jcsm.8930"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2021.676493"},{"key":"e_1_2_9_16_1","doi-asserted-by":"publisher","DOI":"10.3390\/brainsci10060341"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.1093\/tropej\/fmaa122"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jad.2020.10.016"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2021.714181"},{"key":"e_1_2_9_20_1","doi-asserted-by":"publisher","DOI":"10.1111\/bjop.12468"}],"container-title":["Pediatrics International"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ped.15415","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/ped.15415","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/ped.15415","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,2,17]],"date-time":"2024-02-17T05:57:16Z","timestamp":1708149436000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/ped.15415"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1]]},"references-count":19,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2023,1]]}},"alternative-id":["10.1111\/ped.15415"],"URL":"https:\/\/doi.org\/10.1111\/ped.15415","archive":["Portico"],"relation":{},"ISSN":["1328-8067","1442-200X"],"issn-type":[{"type":"print","value":"1328-8067"},{"type":"electronic","value":"1442-200X"}],"subject":[],"published":{"date-parts":[[2023,1]]},"assertion":[{"value":"2022-01-30","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2022-11-07","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-02-10","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e15415"}}