{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,6]],"date-time":"2026-09-06T04:11:17Z","timestamp":1788667877335,"version":"build-2803163510"},"reference-count":31,"publisher":"SAGE Publications","issue":"10","license":[{"start":{"date-parts":[[2025,10,31]],"date-time":"2025-10-31T00:00:00Z","timestamp":1761868800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["The Cleft Palate Craniofacial Journal"],"published-print":{"date-parts":[[2026,10]]},"abstract":"<jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To assess whether demographic characteristics, referral patterns, nomenclature, anatomic features, and\/or socioeconomic factors of patients with Craniofacial Scleroderma (CS) are related to delays in diagnosis or referral for reconstructive surgery.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A retrospective review of patients with CS from 1980 to 2022.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Setting<\/jats:title>\n                    <jats:p>The study was conducted at a tertiary care pediatric hospital.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patients<\/jats:title>\n                    <jats:p>Patients were identified by medical record search for terms \u201cParry-Romberg,\u201d \u201chemifacial atrophy,\u201d \u201clocalized scleroderma,\u201d \u201cprogressive facial atrophy,\u201d \u201ccraniofacial morphea,\u201d \u201ccraniofacial scleroderma,\u201d \u201clinear morphea,\u201d and \u201cen coupe de sabre.\u201d Patients were excluded if the diagnosing specialist, age of onset, or age of diagnosis were unknown.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Main Outcomes Measured<\/jats:title>\n                    <jats:p>Age of onset, diagnosis, sex, nomenclature, anatomic variation, Fitzpatrick skin type, median income, ethnicity, language, travel-distance, referral sequence, and operative interventions were recorded. Two-sample t-tests, one-way analysis of variance, and logistic regression were used to measure association between these variables with delays in diagnosis or referrals to plastic surgery.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of 124 patients identified, 104 met inclusion criteria (62% female, average age of onset 6.4\u2009\u00b1\u20094.4 years and diagnosis 9.5\u2009\u00b1\u20095.4 years). Dermatology most often diagnosed CS (64%). Thirty-five patients (33%) were evaluated by plastic surgery; of these, 45% underwent reconstructive procedures. Age of onset, income, and travel-distance were not statistically associated with delays in diagnosis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Timely diagnosis for patients with CS minimizes disease impact; however, we found that many patients experience years of symptoms before being diagnosed and may not be fully informed of potential reconstructive options. Interdisciplinary care and awareness of treatment options is critical to ensure patients receive prompt and comprehensive care. Recommendations for interdisciplinary care are proposed.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/10556656251375135","type":"journal-article","created":{"date-parts":[[2025,10,31]],"date-time":"2025-10-31T18:24:38Z","timestamp":1761935078000},"page":"3166-3175","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Barriers to Surgical Care in Craniofacial Scleroderma (Parry-Romberg Syndrome)"],"prefix":"10.1177","volume":"63","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4972-1688","authenticated-orcid":false,"given":"Stephanie M","family":"Cohen","sequence":"first","affiliation":[{"name":"Beth Israel Deaconess Medical Center"},{"name":"Department of Plastic and Oral Surgery, Boston Children's Hospital, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kerry A","family":"Morrison","sequence":"additional","affiliation":[{"name":"Department of Plastic and Oral Surgery, Boston Children's Hospital, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0009-0006-9565-5246","authenticated-orcid":false,"given":"Tyler T","family":"Nguyen","sequence":"additional","affiliation":[{"name":"Department of Plastic and Oral Surgery, Boston Children's Hospital, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fatma","family":"Dedeoglu","sequence":"additional","affiliation":[{"name":"Boston Children's Hospital"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ruth Ann","family":"Vleugels","sequence":"additional","affiliation":[{"name":"Boston Children's Hospital"},{"name":"Department of Dermatology, Brigham and Women's Hospital, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6751-6990","authenticated-orcid":false,"given":"Ingrid M","family":"Ganske","sequence":"additional","affiliation":[{"name":"Department of Plastic and Oral Surgery, Boston Children's Hospital, Boston, MA, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2025,10,31]]},"reference":[{"key":"e_1_3_4_2_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.cps.2018.11.007"},{"key":"e_1_3_4_3_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jocn.2020.04.024"},{"key":"e_1_3_4_4_2","doi-asserted-by":"publisher","DOI":"10.1177\/0883073820931253"},{"key":"e_1_3_4_5_2","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaapos.2016.12.004"},{"key":"e_1_3_4_6_2","doi-asserted-by":"publisher","DOI":"10.1177\/10556656221086174"},{"key":"e_1_3_4_7_2","doi-asserted-by":"publisher","DOI":"10.1212\/wnl.61.5.674"},{"key":"e_1_3_4_8_2","volume-title":"StatPearls","author":"Shah SS","year":"2024","unstructured":"Shah SS, Chhabra M. 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