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Long-term treatment outcomes from a patient’s perspective with Treacher Collins syndrome
  1. Francis Smith1,
  2. Peter Fowler2 and
  3. Pamela Ellis3
  1. 1University of Colorado - Anschutz Medical Campus, Aurora, Colorado, USA
  2. 2Orthodontic Department, University of Bristol School of Oral and Dental Sciences, Bristol, UK
  3. 3Orthodontic Department, Dorset County Hospital NHS Foundation Trust, Dorchester, Dorset, UK
  1. Correspondence to Dr Peter Fowler; Peter.Fowler{at}


The management of patients with Treacher Collins Syndrome (TCS) is complex and involves many different specialists within multidisciplinary teams (MDT). The treatment pathway extends from birth well into adulthood and is associated with a heavy burden of care. Due to the extensive nature of the interaction with these patients, MDT members have opportunities to provide enhanced patient-centred care and support.This case report provides an overview of the current knowledge of the aetiology of TCS, the management of these patients and provides a unique perspective from one of the coauthors who has TCS and reports on his treatment experiences and long-term treatment outcomes. By having a better understanding of the impact of TCS and treatment provided, MDT members can not only provide improved clinical treatment but also offer improved patient experiences for those with craniofacial anomalies in particular an increased awareness of the psychosocial challenges they endure.

  • dentistry and oral medicine
  • Ear
  • nose and throat/otolaryngology
  • oral and maxillofacial surgery
  • plastic and reconstructive surgery

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  • Contributors PF was responsible for the conception, design, draft, revision and final approval of the submitted manuscript. FS was responsible for the design, acquisition of data and illustrations. drafting, revisions and final approval of the submitted manuscript. PE was responsible for the drafting, critical revisions and final approval of the submitted manuscript.

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.