{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,27]],"date-time":"2026-03-27T10:44:54Z","timestamp":1774608294972,"version":"3.50.1"},"reference-count":16,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2023,1,13]],"date-time":"2023-01-13T00:00:00Z","timestamp":1673568000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2023,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Cystic Fibrosis (CF) and autism spectrum disorder (ASD) are life\u2010long conditions with intense treatment burdens for patients and families. Patients with a concurrent diagnosis (CF\u2010ASD) experience unique obstacles to CF care. This study describes the experiences of our multidisciplinary CF team in caring for patients with CF\u2010ASD and provides insight into provider and parental perspectives on clinical management.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This is a three\u2010part qualitative study involving (1) retrospective chart review of patients with CF\u2010ASD,\u00a0(2) surveys with multidisciplinary care team members, and (3) semistructured interviews with caregivers of patients with CF\u2010ASD. Challenges in clinical management of this specific cohort were compiled using data from chart review and care team surveys. Strategies to address these concerns were identified and rated by individual families based on relevance and practicality.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Within our CF center, 12 patients have an official diagnosis of ASD. Median age of patients with CF\u2010ASD was 8.5 years (range 3\u201320 years), 67% were male, and 83% were on highly effective modulator therapy. Clinical barriers included sensory processing issues, environmental overstimulation, intolerance to procedures and to disrupted routines. Potentially impactful strategies include patient\u2010specific coping plans, guided behavioral interventions, parental advocacy, and improved communication between the family and multidisciplinary team.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Children with CF\u2010ASD face extraordinary challenges beyond the experience of neurotypical children with CF. Increased awareness of this complex dual diagnosis will help providers be sensitive to the unique needs of these patients, help build consistent and trustworthy relationships with their families and deliver effective clinical care despite limitations.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.26311","type":"journal-article","created":{"date-parts":[[2023,1,7]],"date-time":"2023-01-07T05:43:12Z","timestamp":1673070192000},"page":"1160-1168","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":3,"title":["Clinical management of pediatric patients with cystic fibrosis and autism spectrum disorder"],"prefix":"10.1002","volume":"58","author":[{"given":"Kimberly","family":"Pasley","sequence":"first","affiliation":[{"name":"Division of Pulmonary Medicine Nationwide Children's Hospital Columbus Ohio USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9817-2710","authenticated-orcid":false,"given":"Katelyn","family":"Krivchenia","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Nationwide Children's Hospital Columbus Ohio USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary Lynn","family":"Dell","sequence":"additional","affiliation":[{"name":"Department of Psychiatry and Neurobehavioral Sciences University of Virginia Charlottesville Virginia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3483-0905","authenticated-orcid":false,"given":"Karen S.","family":"McCoy","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Nationwide Children's Hospital Columbus Ohio USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0963-1784","authenticated-orcid":false,"given":"Grace R.","family":"Paul","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Nationwide Children's Hospital Columbus Ohio USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2023,1,13]]},"reference":[{"key":"e_1_2_11_2_1","unstructured":"Cystic Fibrosis Foundation. About fibrosis foundation. Accessed May 2 2022.\u00a0https:\/\/www.cff.org\/What-is-CF\/About-Cystic-Fibrosis"},{"key":"e_1_2_11_3_1","unstructured":"Autism spectrum disorder (ASD). Centers for disease control and prevention. Accessed November 11 2022.https:\/\/www.cdc.gov.ncbddd.autism\/index\/html"},{"key":"e_1_2_11_4_1","doi-asserted-by":"publisher","DOI":"10.15585\/mmwr.ss7011a1"},{"key":"e_1_2_11_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/1097-4679(199011)46:6<722::AID-JCLP2270460605>3.0.CO;2-6"},{"key":"e_1_2_11_6_1","volume-title":"Autism Speaks","author":"Medical Conditions Associated With Autism","year":"2022"},{"key":"e_1_2_11_7_1","doi-asserted-by":"publisher","DOI":"10.1136\/thoraxjnl-2014-205983"},{"key":"e_1_2_11_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2017.11.020"},{"key":"e_1_2_11_9_1","unstructured":"Cystic Fibrosis Foundation. Clinical care guidelines. Accessed February 1 2022.\u00a0https:\/\/www.cff.org\/medical-professionals\/clinical-care-guidelines"},{"key":"e_1_2_11_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2010.02.013"},{"key":"e_1_2_11_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/dme.14069"},{"key":"e_1_2_11_12_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10803-017-3409-5"},{"key":"e_1_2_11_13_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0067797"},{"key":"e_1_2_11_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.eplepsyres.2021.106599"},{"key":"e_1_2_11_15_1","doi-asserted-by":"publisher","DOI":"10.2196\/17184"},{"key":"e_1_2_11_16_1","first-page":"1","article-title":"Telehealth mask wearing training for children with autism during the COVID\u201019 pandemic","volume":"9999","author":"Sivaraman M","year":"2020","journal-title":"J Appl Behav Anal"},{"key":"e_1_2_11_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/jaba.833"}],"container-title":["Pediatric Pulmonology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.26311","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1002\/ppul.26311","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.26311","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,8,17]],"date-time":"2023-08-17T20:45:36Z","timestamp":1692305136000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ppul.26311"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1,13]]},"references-count":16,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2023,4]]}},"alternative-id":["10.1002\/ppul.26311"],"URL":"https:\/\/doi.org\/10.1002\/ppul.26311","archive":["Portico"],"relation":{},"ISSN":["8755-6863","1099-0496"],"issn-type":[{"value":"8755-6863","type":"print"},{"value":"1099-0496","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,13]]},"assertion":[{"value":"2022-08-10","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-01-05","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-01-13","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}