What Matters to Patients With Cleft Lip and/or Palate

Author:

Wong Riff Karen W. Y.12,Tsangaris Elena2,Goodacre Timothy E. E.3,Forrest Christopher R.1,Lawson Jessica4,Pusic Andrea L.5,Klassen Anne F.6

Affiliation:

1. Division of Plastic and Reconstructive Surgery, Hospital for Sick Children, University of Toronto, Toronto, Ontario, Canada

2. Department of Clinical Epidemiology and Biostatistics, McMaster University, Hamilton, Ontario, Canada

3. Spires Cleft Center, Oxford Radcliffe Children’s Hospital, Oxford, United Kingdom

4. Ferkauf Graduate School of Psychology, Yeshiva University, Bronx, NY, USA

5. Plastic and Reconstructive Surgery, Memorial Sloan-Kettering Cancer Center, New York, NY, USA

6. Department of Pediatrics, McMaster University, Hamilton, Canada

Abstract

Objective: The goal of treatment for individuals with cleft lip and/or palate (CL/P) is to improve physical, psychological, and social health. Outcomes of treatment are rarely measured from the patient’s perspective. The aim of the study was to develop a conceptual framework for a patient-reported outcome (PRO) instrument for individuals with clefts (CLEFT-Q) by developing an in-depth understanding of issues that individuals consider to be important. Design: The qualitative methodology of interpretive description was used. Setting, Participants, and Intervention: We performed 136 individual in-depth interviews with participants with clefts of any age, presenting for cleft care, across 6 countries. Parents were involved if the child was more comfortable. Interviews were audio-recorded, transcribed verbatim, and coded using constant comparison. The data were used to develop a refined conceptual framework. Results: Participants described concepts of interest in 3 top-level domains, each of which included subdomains: appearance (face, nose, nostrils, teeth, lips, jaw, cleft lip scar), health-related quality of life (psychological, social, school, speech-related distress), and facial function (speech, eating/drinking). Participants were able to describe changes over time with regard to the 3 domains. Conclusions: A conceptual framework of concepts of interest to individuals with CL/P formed the basis of the scales in the CLEFT-Q. Each subdomain represents an independently functioning scale. Understanding what matters to patients is essential in guiding PRO measurement.

Funder

Physicians' Services Incorporated Foundation

Publisher

SAGE Publications

Subject

Otorhinolaryngology,Oral Surgery

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