Drs. Klassen, Wong Riff, and Harrison will describe the process of developing PRO measures using the CLEFT-Q and FACE-Q Craniofacial Modules as examples. These two PRO measures were designed for children and young adults with cleft lip and/or palate and any condition affecting the face using large international samples to optimize generalizability. The CLEFT-Q has been licensed for research, quality improvement, and patient care by 226 users in 45 countries. It has also been adapted for computer adaptive testing (CAT), which shortens the number of items that respondents are required to complete.
Dr. Conrad Harrison is a Plastic Surgery Registrar and NIHR Doctoral Research Fellow at the University of Oxford, UK. As part of his PhD, he has led the development and deployment of a computerized adaptive test for CLEFT-Q.
Dr. Karen Wong Riff is a Pediatric Plastic Surgeon-Scientist in the Division of Plastic, Reconstructive, and Aesthetic Surgery at the Hospital for Sick Children in Toronto, Canada. She is an assistant professor in the Department of Surgery and the Institute of Health Policy, Management, and Evaluation at the University of Toronto and an Associate Scientist at the SickKids Research Institute. Her research focus is on patient reported outcomes in a global pediatric surgical population. She is the co-developer of the CLEFT-Q, EAR-Q, and the FACE-Q Craniofacial Module.
Dr. Anne Klassen is a professor in the Department of Pediatrics at McMaster University. She currently holds a chair in Sex & Gender Science from the Canadian Institutes of Health Research. She is one of the developers of the Q-Portfolio series of the patient- reported outcome measures that includes CLEFT-Q.