EQ-5D-Y Scores for Adolescents with X-Linked Hypophosphataemia

Featuring EQ-5D-Y scores for adolescents with X-linked hypophosphataemia (XLH) treated with burosumab before the end of skeletal growth. The data was collected as part of a prospective, mixed-methods study (NCT05181839) using patient-reported outcomes, wearable devices, and interviews. The dataset size is 5.5 KB, but the number of rows and columns is unknown.

Use Cases

• Analyze patient-reported EQ-5D-Y scores to assess health-related quality of life in adolescents with XLH.
• Correlate symptom severity scores for pain, stiffness, and fatigue with data from wearable devices to understand activity triggers.
• Investigate emotional concerns related to XLH and treatment transition using qualitative interview data from the study.

Strengths

• Data originates from a prospective, multicentre clinical study (NCT05181839), providing a structured collection method.
• Includes multiple data types: patient-reported outcomes (PROs), wearable device data, and interview insights.
• The dataset is focused on a specific, understudied population: adolescents with XLH at the end of skeletal growth.

Limitations

• The dataset is very small at 5.5 KB, indicating limited scope and likely a small sample size.
• The specific variables (columns) and the number of data rows are not documented, limiting analytical planning.
• The data is specific to a rare disease (XLH) and a particular treatment (burosumab), limiting generalizability.

Provenance

Source

figshare, authored by Vrinda Saraff.

Collection Method

Collected via a prospective, multicentre, mixed-methods study involving patient-reported outcomes, wearable devices, and interviews.

Time Range

Pre-end of skeletal growth (pre-EoSG) period.

Freshness

Last updated on 2026-03-20.

Geography

Multicentre study; specific locations unknown.