{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,14]],"date-time":"2026-10-14T18:51:01Z","timestamp":1792003861878,"version":"4.4.0"},"reference-count":22,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,10,5]],"date-time":"2023-10-05T00:00:00Z","timestamp":1696464000000},"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":[[2024,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>Patients with cystic fibrosis (CF) often bring education\u2010related concerns to their medical teams. Concerns around the ability for CF care teams to identify and address these concerns exist. We sought to describe CF care team perceptions of (1) patient and family education\u2010related needs, (2) how these needs are identified, documented and addressed, and (3) education\u2010related resource gaps.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A survey was emailed to pediatric care teams in the CF Foundation Care Center Network in April 2022. Individuals or care teams could complete the survey. Responses were aggregated for descriptive analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Sixty\u2010seven programs responded representing 52% of United States pediatric CF centers. Most centers (88%) indicated social workers primarily address school concerns. Care teams often complete school forms (99%), coach families to communicate with schools (96%), communicate with schools directly (90%), and develop educational plans (76%). Formal education risk assessment and support programs are relatively uncommon (19%). Common student\u2010specific needs include carrying medications (75%) and leaving class for gastrointestinal issues (54%). Needs reported are informational materials for families and schools (94%), staff education about school concerns and how to address them (91%), additional staff for education\u2010related issues (65%), and expertise in education plan development (62%).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>CF care teams often lack comprehensive resources to identify and address education\u2010related concerns. Systematically performing needs assessments, improving training for providers, and evaluating the benefits of education specialists on care teams may better identify and address education\u2010related needs. Supporting educational progression will foster continued independence and well\u2010being in adulthood.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.26716","type":"journal-article","created":{"date-parts":[[2023,10,5]],"date-time":"2023-10-05T20:07:42Z","timestamp":1696536462000},"page":"95-100","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Education\u2010related needs for children with cystic fibrosis: Perspectives of US pediatric care teams"],"prefix":"10.1002","volume":"59","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4474-8021","authenticated-orcid":false,"given":"Michelle","family":"Hjelm","sequence":"first","affiliation":[{"name":"Division of Pulmonary Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"},{"name":"Department of Pediatrics University of Cincinnati College of Medicine Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elizabeth","family":"Hente","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9329-9459","authenticated-orcid":false,"given":"Christine L.","family":"Schuler","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"},{"name":"Department of Pediatrics University of Cincinnati College of Medicine Cincinnati Ohio USA"},{"name":"Division of Hospital Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Qing","family":"Duan","sequence":"additional","affiliation":[{"name":"Division of Biostatistics and Epidemiology Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Strong","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"},{"name":"Center for School Services and Educational Research Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3075-1166","authenticated-orcid":false,"given":"Thomas","family":"Boat","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"},{"name":"Department of Pediatrics University of Cincinnati College of Medicine Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4347-7397","authenticated-orcid":false,"given":"Stephanie","family":"Filigno","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"},{"name":"Department of Pediatrics University of Cincinnati College of Medicine Cincinnati Ohio USA"},{"name":"Division of Behavioral Medicine and Clinical Psychology Center for School Services and Educational Research, Cincinnati Children's Hospital Medical Center (CCHMC) Cincinnati Ohio USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,10,5]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.25733"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1097\/MOP.0000000000000625"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1093\/occmed\/kqt140"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.20090"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2011.10.008"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.4187\/respcare.06607"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jcf.2009.03.002"},{"key":"e_1_2_12_9_1","unstructured":"2021 Patient Registry Annual Data Report(2021).https:\/\/www.cff.org\/sites\/default\/files\/2021-11\/Patient-Registry-Annual-Data-Report.pdf"},{"key":"e_1_2_12_10_1","volume-title":"United States Department of Education National Center for Education Statistics","author":"Public High School Graduation Rates","year":"2023"},{"key":"e_1_2_12_11_1","unstructured":"Healthy People 2030.High School Graduation. United States Department of Health and Human Services."},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1746-1561.2011.00648.x"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2022.09.049"},{"key":"e_1_2_12_14_1","unstructured":"Cystic Fibrosis Foundation.A Teacher's Guide to Cystic Fibrosis. Accessed February 20 2023.https:\/\/www.cff.org\/intro-cf\/teachers-guide-cystic-fibrosis"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493518814930"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12475"},{"key":"e_1_2_12_17_1","unstructured":"Johns Hopkins Cystic Fibrosis Center.School and Work. Accessed February 20 2023.https:\/\/hopkinscf.org\/clinical-care\/school-and-work\/"},{"key":"e_1_2_12_18_1","unstructured":"UAMS. CF in School. Accessed February 20 2023.https:\/\/medicine.uams.edu\/pediatrics\/specialties\/sections\/pulmonology\/patient-care\/cystic-fibrosis-center\/cf-in-school\/"},{"key":"e_1_2_12_19_1","unstructured":"CF Foundation.CF Care Centers.https:\/\/www.cff.org\/managing-cf\/care-centers"},{"key":"e_1_2_12_20_1","unstructured":"SurveyMonkey.2022.https:\/\/www.surveymonkey.com"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare8040506"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/pon.5104"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.24414"}],"container-title":["Pediatric Pulmonology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1002\/ppul.26716","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,12,29]],"date-time":"2023-12-29T13:14:41Z","timestamp":1703855681000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1002\/ppul.26716"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,10,5]]},"references-count":22,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2024,1]]}},"alternative-id":["10.1002\/ppul.26716"],"URL":"https:\/\/doi.org\/10.1002\/ppul.26716","archive":["Portico"],"relation":{},"ISSN":["8755-6863","1099-0496"],"issn-type":[{"value":"8755-6863","type":"print"},{"value":"1099-0496","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,10,5]]},"assertion":[{"value":"2023-06-14","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-09-26","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2023-10-05","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}