Angioedema Patient Interviews and PRO Assessments for Acquired C1 Inhibitor Deficiency

8 semi-structured interviews with adults living with angioedema due to acquired C1 inhibitor deficiency (AAE-C1INH) were conducted to develop a conceptual disease model. The study explored the relevance of patient-reported outcome (PRO) measures, including the Patient Global Impression of Change and Severity scales. The dataset, authored by Mats de Lange and shared under CC-BY-4.0, was last updated in May 2026.

Use Cases

• Developing conceptual disease models for rare conditions based on patient interview data.
• Assessing the relevance and clarity of Patient Global Impression (PGI) scales for patient-reported outcomes.
• Informing clinical outcome assessment strategies for phase 3 trials in AAE-C1INH based on patient feedback.
• Analyzing the impact of disease manifestations, such as abdominal or facial swelling attacks, on daily life.

Strengths

• Includes direct patient feedback from 8 adults with a specific, rare condition.
• Provides qualitative insights into disease impact, with 7 out of 8 participants reporting daily life effects.
• Assesses specific PRO instruments (PGI-C, PGI-S, PGA) for clarity and meaningful change thresholds.

Limitations

• Row count is unknown, which may limit suitability assessment.
• Column-level documentation is absent; field semantics must be inferred after download.
• The dataset is small, at 839.3 KB, indicating limited scope.

Provenance

Source

figshare

Collection Method

Cross-sectional, qualitative study involving semi-structured interviews.

Freshness

Last updated 2026-05-14 04:29:30; freshness should be verified.