Grants We Funded

Abstract
Patient-reported outcome (PRO) instruments are rating scales that measure concepts of interest (COI) to patients such as symptoms, appearance and health-related quality-of-life (QOL) by asking patients directly (without interpretation by a physician or anyone else). In order to measure COI important to pediatric patients with conditions that are associated with a visible facial difference, well-defined, valid, reliable and responsive PRO instruments are needed. The aim of this study is to develop a new PRO instrument called FACE-Q KIDS. This new PRO instrument will be for patients aged 8 to 22 years with conditions that have an associated visible facial difference, e.g., facial paralysis, craniosynostosis, congenital naevi, vascular malformations, burns, acne, eczema, birthmarks, ear deformities. FACE-Q KIDS will be designed to account for the distinct health domains of importance to patients (e.g., appearance, function, psychosocial wellbeing), identified through detailed qualitative research, and will do this in a way to capture important age- and condition-related differences. To develop the FACE-Q KIDS, we will conduct qualitative interviews with a heterogeneous sample of 60 patients. Interviews will be audio-recorded, transcribed and coded using a line-by-line approach. Analysis will help to identify the most important COI, which we will use to form a hypothesized conceptual framework. We will then use the framework to guide the development of a set of scales. Each scale will be populated with a set of items that map out a clinical hierarchy for each COI. We anticipate that some scales will measure COI that are common to all patients (quality life impact of a visible facial difference), and other scales will measure COI that are specific to a subgroup (e.g., functional issues such as speech for facial paralysis patients). In a future study, we will field-test FACE-Q KIDS to collect data to perform item reduction and to test its psychometric properties (e.g., reliability, validity and responsiveness).

Biography
Klassen completed a doctorate in Health Services Research at the University of Oxford in 1997. She subsequently received a Killam postdoctoral fellowship, followed by consecutive awards from the Canadian Institute of Health Research (CIHR), i.e., postdoctoral fellowship, new investigator and mid-career. She is currently Professor of Pediatrics and Associate Member of the Department of Health Research Methodology, Evidence and Impact and Scientist in the CanChild Center for Childhood Disability Research. She is internationally known as an applied health services researcher with expertise in developing patient-reported outcome (PRO) instruments. She uses state-of-the-art methods based on Rasch Measurement Theory to maximize the clinical meaning and scientific quality of the PRO instruments produced. To address the lack of available PRO instruments for use in pediatric and adult plastic and reconstructive surgery, she co-developed the following instruments: BREAST-Q, FACE-Q, BODY-Q, SCAR-Q, WOUND-Q, CLEFT-Q and FACE-Q Kids. These measures are being used by governments, organizations, industry, academia, and clinicians, helping to transform healthcare delivery and patient outcomes.