Retinoblastoma Patient-Reported Outcome Scale Participant Counts

Farheen Khan's figshare dataset provides participant counts for scales and checklists used in a content validity study of the FACE-Q Craniofacial Module for retinoblastoma survivors. The study enrolled 14 survivors and 15 parents from the Hospital for Sick Children between February 2022 and February 2024. The dataset details modifications to scales like Social Function and Appearance Distress, and the development of a new 17-item scale for prosthetic eye appearance.

Use Cases

• Analyze participant counts per scale to assess sample size adequacy for the Social Function and Appearance Distress scale modifications.
• Compare the number of items added, revised, or removed across scales to understand the focus of the qualitative study.
• Use the participant demographics (e.g., survivor mean age of 20.3 years) to contextualize the scale development for specific age cohorts.
• Reference the novel 17-item scale for prosthetic eye appearance, developed with input from 10 patients and 6 parents, for related outcome measure research.

Strengths

• Data is derived from a structured qualitative study with a defined participant count of 29 individuals (14 survivors, 15 parents).
• The study achieved saturation through interviews conducted over a two-year period from February 2022 to February 2024.
• Specific modification counts are provided, including 10 revised items, 11 added items, and 3 removed items.

Limitations

• The dataset is very small (5.5 KB), indicating limited scope, likely containing only summary counts rather than raw interview or response data.
• Participant recruitment was from a single site (Hospital for Sick Children, Canada), limiting geographic and institutional generalizability.
• The dataset focuses on participant numbers and modification tallies, not the psychometric properties or validated scores of the modified scales.

Provenance

Source

Farheen Khan via figshare

Collection Method

Cross-sectional qualitative content validity study using cognitive debriefing interviews with survivors and parents.

Time Range

February 2022 to February 2024

Freshness

null

Geography

Hospital for Sick Children, Canada