Facial plast Surg 2017; 33(05): 499-508
DOI: 10.1055/s-0037-1606361
Original Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

Development of a New Module of the FACE-Q for Children and Young Adults with Diverse Conditions Associated with Visible and/or Functional Facial Differences

Natasha M. Longmire1, Karen W.Y. Wong Riff2, Justine L. O'Hara3, Shivani Aggarwala4, Gregory C. Allen5, Neil W. Bulstrode3, Christopher R. Forrest2, Brooke M. French6, Timothy E.E. Goodacre7, Damian Marucci4, Jonathan H. Norris8, Vivek Panchapakesan9, Bhoomika Piplani1, Andrea L. Pusic10, Herman Jr. Vercruysse3, Anne F. Klassen1
  • 1Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada
  • 2Department of Plastic and Reconstructive Surgery, Hospital for Sick Children, Toronto, Ontario, Canada
  • 3Department of Plastic and Reconstructive Surgery, Great Ormond Street Hospital For Children NHS Trust, London, London, United Kingdom of Great Britain and Northern Ireland
  • 4Department of Surgery, Children's Hospital at Westmead, Westmead, New South Wales, Australia
  • 5Department of Otolaryngology, University of Colorado Denver School of Medicine, Aurora, Colorado
  • 6Department of Plastic and Reconstructive Surgery, University of Colorado Denver School of Medicine, Aurora, Colorado
  • 7Spires Cleft Centre, Oxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, United Kingdom of Great Britain and Northern Ireland
  • 8Oxford Eye Hospital, John Radcliffe Hospital, Oxford, Oxfordshire, United Kingdom of Great Britain and Northern Ireland
  • 9Department of Plastic Surgery, William Osler Health System, Brampton, Ontario, Canada
  • 10Department of Plastic and Reconstructive Surgery, Memorial Sloan-Kettering Cancer Center, New York, New York
Further Information

Publication History

Publication Date:
29 September 2017 (online)

Abstract

Appearance and facial function are concepts not well addressed in current pediatric patient-reported outcome measures (PROM) for facial conditions. We aimed to develop a new module of the FACE-Q for children/young adults with facial conditions that include ear anomalies, facial paralysis, skeletal conditions, and soft tissue conditions. Semi-structured and cognitive interviews were conducted with patients aged 8–29 years recruited from craniofacial centers in Canada, USA, UK, and Australia. Interviews were used to elicit new concepts and to obtain feedback on CLEFT-Q scales hypothesized to be relevant to other facial conditions. Interview data were recorded, transcribed, and coded. Experts were emailed and invited to provide feedback via Research Electronic Data Capture (REDCap). Eighty-four participants and 43 experts contributed. Analysis led to the development of a conceptual framework and 14 new scales that measure appearance, facial function, health-related quality of life, and adverse effects of treatment. In addition, 12 CLEFT-Q scales were determined to have content validity for use with other facial conditions. Expert input led to minor changes to scales and items. This new FACE-Q module for children/young adults is being field-tested internationally. Once finalized, we anticipate this PROM will be used to inform clinical practice and research studies.