Retinoblastoma Patient-Reported Outcome Survey Modifications

February 2022 to February 2024 cognitive debriefing interviews with 14 retinoblastoma survivors and 15 parents informed modifications to the FACE-Q Craniofacial Module. The dataset contains qualitative feedback and resulting changes, including the revision of 10 items, addition of 11 items, removal of 3 items, and creation of a novel 17-item scale for prosthetic eye appearance assessment.

Use Cases

• Analyze qualitative feedback from survivors and parents to identify common themes in comprehensibility and relevance of the FACE-Q items.
• Compare the Social Function (n=7) and Appearance Distress (n=5) scales to understand which required the most modifications for retinoblastoma survivors.
• Validate the novel 17-item scale for prosthetic eye appearance, developed with input from 10 patients and 6 parents, against clinical assessments.
• Study the iterative modifications made by the panel of clinicians, scientists, and patient advocates to trace the evolution of the outcome measure.

Strengths

• Data derived from 29 total participants (14 survivors, 15 parents) providing direct patient and caregiver input.
• Clear documentation of modifications: 10 items revised, 11 added, 3 removed, and a new 17-item scale created.
• Interviews conducted over a defined 2-year period (February 2022 to February 2024) at a single specialized institution.

Limitations

• Small participant sample size (n=29) limits statistical generalizability of findings.
• Data is qualitative and text-based, requiring manual coding or thematic analysis for quantitative use.
• Geographic scope is limited to a single hospital in Canada, potentially reducing cultural applicability.

Provenance

Source

Farheen Khan, Hospital for Sick Children.

Collection Method

Cross-sectional qualitative content validity study using cognitive debriefing interviews until saturation.

Time Range

February 2022 to February 2024.

Freshness

Last updated March 2026.

Geography

Canada (Hospital for Sick Children).