{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,11]],"date-time":"2026-10-11T13:17:28Z","timestamp":1791724648624,"version":"4.3.4"},"reference-count":44,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2022,10,7]],"date-time":"2022-10-07T00:00:00Z","timestamp":1665100800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100006244","name":"Stichting Kinderen Kankervrij","doi-asserted-by":"publisher","award":["297"],"award-info":[{"award-number":["297"]}],"id":[{"id":"10.13039\/501100006244","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Cancer Medicine"],"published-print":{"date-parts":[[2023,2]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>Adverse events (AE) of treatment are prevalent and diverse in head and neck rhabdomyosarcoma (HNRMS) survivors. These AEs are often reported by physicians; however, patients' perceptions of specific AE are not well known. In this study, we explored patient\u2010reported outcomes measuring appearance, health\u2010related quality of life (HRQOL), and facial function in HNRMS survivors. Second, we assess the relationship between physician grading of AE and patient reporting.<\/jats:p><\/jats:sec><jats:sec><jats:title>Materials and Methods<\/jats:title><jats:p>Survivors of pediatric HNRMS, diagnosed between 1993 and 2017, who were at least 2\u2009years after completing treatment were invited to an outpatient clinic as part of a multicenter cross\u2010sectional cohort study. At the outpatient clinics, survivors aged \u22658\u2009years filled out the FACE\u2010Q Craniofacial module; a patient\u2010reported outcome instrument measuring issues specific to patients with facial differences. AE were systematically assessed by a multidisciplinary team based on the Common Terminology Criteria of Adverse Events system.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Seventy\u2010seven survivors with a median age of 16\u2009years (range 8\u201343) and median follow\u2010up of 10\u2009years (range 2\u201342) completed the questionnaire and were screened for AEs. Patient\u2010reported outcomes varied widely between survivors. Many survivors reported negative consequences: 82% on appearance items, 81% on HRQOL items, and 38% on facial function items. There was a weak correlation between physician\u2010scored AEs and the majority of patient\u2010reported outcomes specific for those AEs.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>Physician\u2010graded AEs are not sufficient to provide tailored care for HNMRS survivors. Findings from this study highlight the importance of incorporating patient\u2010reported outcome measures in survivorship follow\u2010up.<\/jats:p><\/jats:sec>","DOI":"10.1002\/cam4.5252","type":"journal-article","created":{"date-parts":[[2022,10,8]],"date-time":"2022-10-08T07:00:44Z","timestamp":1665212444000},"page":"4739-4750","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Patient\u2010reported outcomes in childhood head and neck rhabdomyosarcoma survivors and their relation to physician\u2010graded adverse events\u2014A multicenter study using the <scp>FACE\u2010Q<\/scp> Craniofacial module"],"prefix":"10.1002","volume":"12","author":[{"given":"Mich\u00e8le","family":"Morfouace","sequence":"first","affiliation":[{"name":"Department of Pediatric Oncology Princess M\u00e1xima Center for Pediatric Oncology  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4926-056X","authenticated-orcid":false,"given":"Marinka L. F.","family":"Hol","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery Princess Maxima Center Princess M\u00e1xima Center for Pediatric Oncology  Utrecht The Netherlands"},{"name":"Department of Otolaryngology and Head and Neck Cancer University of Utrecht  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Reineke A.","family":"Schoot","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology Princess M\u00e1xima Center for Pediatric Oncology  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Olga","family":"Slater","sequence":"additional","affiliation":[{"name":"Department of Pediatric Oncology Great Ormond Street Hospital  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Daniel J.","family":"Indelicato","sequence":"additional","affiliation":[{"name":"Department of Radiotherapy University of Florida Proton Therapy Institute  Jacksonville Florida USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fr\u00e9d\u00e9ric","family":"Kolb","sequence":"additional","affiliation":[{"name":"Department of Plastic Surgery Institute Gustave Roussy  Paris France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ludwig E.","family":"Smeele","sequence":"additional","affiliation":[{"name":"Department of Pediatric Surgery Princess Maxima Center Princess M\u00e1xima Center for Pediatric Oncology  Utrecht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Johannes H. 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