Establishing content validity of the CLEFT-Q: A new patient-reported outcome instrument for CLEFT lip/palate

Elena Tsangaris, Karen W.Y.Wong Riff, Tim Goodacre, Christopher R. Forrest, Marieke Dreise, Jonathan M Sykes, Tristan De Chalain, Karen Harman, Aisling O'Mahony, Andrea L. Pusic, Lehana Thabane, Achilleas Thoma, Anne F. Klassen

Research output: Contribution to journalArticle

11 Citations (Scopus)

Abstract

Background: The CLEFT-Q is a new patient-reported outcome instrument designed to measure outcomes that matter to patients. The aim of this qualitative study was to establish content validity of the CLEFT-Q in patients who differ by age and culture. Methods: Patients aged between 6 and 29 years were recruited from plastic surgery clinics in Canada, India, Ireland, the Philippines, The Netherlands and the United States. Healthcare providers and other experts participated in a focus group or provided individual feedback. Input was sought on all aspects of the CLEFT-Q (item wording, instructions, and response options), and to identify missing content. Patient interviews and expert feedback took place between September 2013 and September 2014. Results: Sixty-nine patients and 44 experts participated. The first draft of the CLEFT-Q consisted of 163 items measuring 12 constructs. The first round of feedback identified 92 items that required revision. In total, 3 rounds of interviews, and the involvement of an artist to create pictures for 17 items, were needed to establish content validity. At the conclusion of cognitive interviews, the CLEFT-Q consisted of 13 scales (total 171 items) that measure appearance, health-related quality of life, and facial function. The mean Flesch-Kincaid readability statistic for items was 1.4 (0 to 5.2). Conclusion: Cognitive interviews and expert review allowed us to identify items that required re-wording, re-conceptualizing, or to be removed, as well as any missing items. This process was useful for refining the CLEFT-Q scales for further testing.

Original languageEnglish (US)
Article numbere1305
JournalPlastic and Reconstructive Surgery - Global Open
Volume5
Issue number4
DOIs
StatePublished - Jan 1 2017

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Palate
Lip
Interviews
Philippines
Plastic Surgery
Focus Groups
Ireland
Health Personnel
Netherlands
Canada
India
Quality of Life
Outcome Assessment (Health Care)
Patient Reported Outcome Measures

ASJC Scopus subject areas

  • Surgery

Cite this

Establishing content validity of the CLEFT-Q : A new patient-reported outcome instrument for CLEFT lip/palate. / Tsangaris, Elena; Riff, Karen W.Y.Wong; Goodacre, Tim; Forrest, Christopher R.; Dreise, Marieke; Sykes, Jonathan M; De Chalain, Tristan; Harman, Karen; O'Mahony, Aisling; Pusic, Andrea L.; Thabane, Lehana; Thoma, Achilleas; Klassen, Anne F.

In: Plastic and Reconstructive Surgery - Global Open, Vol. 5, No. 4, e1305, 01.01.2017.

Research output: Contribution to journalArticle

Tsangaris, E, Riff, KWYW, Goodacre, T, Forrest, CR, Dreise, M, Sykes, JM, De Chalain, T, Harman, K, O'Mahony, A, Pusic, AL, Thabane, L, Thoma, A & Klassen, AF 2017, 'Establishing content validity of the CLEFT-Q: A new patient-reported outcome instrument for CLEFT lip/palate', Plastic and Reconstructive Surgery - Global Open, vol. 5, no. 4, e1305. https://doi.org/10.1097/GOX.0000000000001305
Tsangaris, Elena ; Riff, Karen W.Y.Wong ; Goodacre, Tim ; Forrest, Christopher R. ; Dreise, Marieke ; Sykes, Jonathan M ; De Chalain, Tristan ; Harman, Karen ; O'Mahony, Aisling ; Pusic, Andrea L. ; Thabane, Lehana ; Thoma, Achilleas ; Klassen, Anne F. / Establishing content validity of the CLEFT-Q : A new patient-reported outcome instrument for CLEFT lip/palate. In: Plastic and Reconstructive Surgery - Global Open. 2017 ; Vol. 5, No. 4.
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AU - Goodacre, Tim

AU - Forrest, Christopher R.

AU - Dreise, Marieke

AU - Sykes, Jonathan M

AU - De Chalain, Tristan

AU - Harman, Karen

AU - O'Mahony, Aisling

AU - Pusic, Andrea L.

AU - Thabane, Lehana

AU - Thoma, Achilleas

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