FACE-Q Craniofacial Module Item Revisions for Retinoblastoma

February 2022 to February 2024 cognitive interviews with 14 retinoblastoma survivors and 15 parents informed modifications to a patient-reported outcome measure. The dataset documents the revision of ten items, addition of eleven items, and removal of three items, primarily affecting Social Function and Appearance Distress scales. A novel 17-item scale for prosthetic eye appearance was also developed.

Use Cases

• Analyze the distribution of modifications across scales like Social Function (n=7) and Appearance Distress (n=5) to identify core concerns.
• Use the documented revised, added, and removed items to validate a psychometric model for the adapted FACE-Q module.
• Study the novel 17-item prosthetic eye scale developed from input by 10 patients and 6 parents for specialized outcome assessment.

Strengths

• Directly captures patient and parent input from 29 participants (14 survivors, 15 parents) via cognitive interviews.
• Documents specific counts of modifications: 10 items revised, 11 added, and 3 removed.
• Includes a novel, patient-informed scale of 17 items for a specific clinical subpopulation.

Limitations

• Small participant sample size (n=29) limits generalizability of findings.
• Dataset scope is limited to qualitative content validity; psychometric validation is noted as a future step.
• Geographic bias from single-site data collection at the Hospital for Sick Children in Canada.

Provenance

Source

Farheen Khan via figshare

Collection Method

Cross-sectional qualitative content validity study using cognitive debriefing interviews until saturation, with iterative modifications by a clinician/scientist/advocate panel.

Time Range

February 2022 to February 2024

Freshness

null

Geography

Canada (Hospital for Sick Children)