June 2023
Volume 64, Issue 8
Open Access
ARVO Annual Meeting Abstract  |   June 2023
Evaluation and Adaptation of the FACE-Q Patient-Reported Outcome Measure for Ophthalmology Patients
Author Affiliations & Notes
  • Farheen Khan
    Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
    Institute of Medical Sciences, University of Toronto, Toronto, Ontario, Canada
  • Roxanne Noronha
    Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
  • Sara Williams
    Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
  • Karen Wong-Riff
    Division of Plastic and Reconstructive Surgery, The Hospital for Sick Children, Toronto, Ontario, Canada
    Division of Plastic and Reconstructive Surgery, University of Toronto, Toronto, Ontario, Canada
  • Asim Ali
    Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
    Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada
  • Helen Dimaras
    Department of Ophthalmology and Vision Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada
    Department of Ophthalmology and Vision Sciences, University of Toronto, Toronto, Ontario, Canada
  • Footnotes
    Commercial Relationships   Farheen Khan None; Roxanne Noronha None; Sara Williams None; Karen Wong-Riff None; Asim Ali None; Helen Dimaras None
  • Footnotes
    Support  Vision Science Research Program (University of Toronto), Ontario Graduate Scholarship (University of Toronto)
Investigative Ophthalmology & Visual Science June 2023, Vol.64, 4230. doi:
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      Farheen Khan, Roxanne Noronha, Sara Williams, Karen Wong-Riff, Asim Ali, Helen Dimaras; Evaluation and Adaptation of the FACE-Q Patient-Reported Outcome Measure for Ophthalmology Patients. Invest. Ophthalmol. Vis. Sci. 2023;64(8):4230.

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      © ARVO (1962-2015); The Authors (2016-present)

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Abstract

Purpose : There is currently a lack of validated patient-reported outcomes (PROMs) to evaluate treatment outcomes of corneal anesthesia (CA), retinoblastoma (RB), and strabismus (SB) patients. Previous studies identified appearance-based outcomes as important to CA and RB patients, and it is hypothesized that such outcomes may also be important to SB patients. FACE-Q | CRANIOFACIAL (FACE-Q) is a well-validated PROM that evaluates appearance-based outcomes of craniofacial patients. This prospective observational and qualitative study evaluated FACE-Q’s content validity for use in CA, RB, and SB patients.

Methods : Cognitive debriefing interviews were conducted with CA, RB and SB patients ≥ 8 years old, and parents of patients < 8 years old, hard of hearing or developmentally delayed. The interviews were part of a two-round process, using “think aloud” and verbal probing to obtain feedback on seven FACE-Q scales measuring eye-related (3/7), appearance-based (2/7) and psychosocial outcomes (3/7). Modifications were made to the FACE-Q based on feedback obtained from round 1 and additional input from a panel of scientific and clinical stakeholders and patient advocates. The modified FACE-Q was evaluated for its acceptability and relevance in round 2.

Results : Most content of FACE-Q was comprehensible and relevant to CA, RB, and SB patients. After round 1, some modifications, including expanding recall periods, removing concepts that were not relevant to patients’ lived experiences or conditions, subdividing scales to better reflect the diversity of patients’ experiences, rewording instructions and existing items or adding examples to enhance comprehensibility, and adding missing condition-specific concepts to improve comprehensiveness, were made. In round 2, participants indicated that these modifications were relevant and acceptable and that the modified FACE-Q was more relevant, comprehensible, and comprehensive compared to the original version.

Conclusions : The study suggests that FACE-Q may be a suitable PROM to adapt to measure appearance-based outcomes in CA, RB, and SB patients. With lived expertise, clinical, and scientific input, FACE-Q was modified to enhance its relevance, comprehensibility, and comprehensiveness for ophthalmic patients. Next steps include validation and psychometric evaluation of the modified FACE-Q.

This abstract was presented at the 2023 ARVO Annual Meeting, held in New Orleans, LA, April 23-27, 2023.

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