Patient Perspectives on Treatment Outcomes in Autoimmune Bullous Diseases: A Dutch Survey

A Dutch cross-sectional study conducted between October 2023 and January 2024, using a self-developed questionnaire to assess patient perspectives on treatment outcomes and priorities for autoimmune bullous diseases. The dataset, published by figshare admin karger, includes responses from patients with pemphigoid and pemphigus, focusing on symptoms, side effects, and indicators of treatment success. The supplementary material is a 106.8 KB DOCX file.

Use Cases

• Identify patient-prioritized symptoms for pemphigoid and pemphigus based on survey results like 'formation of new blisters' and 'pruritus'.
• Analyze factors influencing treatment choice, such as the importance of side effects mentioned by 41% of pemphigoid and 39% of pemphigus patients.
• Define patient-centered indicators of treatment success based on reported priorities like 'no blisters' and preservation of physical and psychological well-being.

Strengths

• Survey includes both closed- and open-ended questions, capturing quantitative and qualitative patient perspectives.
• Results are stratified by disease subgroup (pemphigoid and pemphigus), with specific percentages provided for key priorities.
• Dataset is openly licensed under CC-BY-4.0, facilitating reuse and sharing.

Limitations

• Dataset is small (106.8 KB), suggesting limited scope or a summary document rather than raw response data.
• Column-level documentation is absent; field semantics must be inferred after download.
• Row count is unknown, which may limit suitability assessment for statistical analysis.

Provenance

Source

figshare admin karger

Collection Method

Cross-sectional study using a self-developed questionnaire with closed- and open-ended questions.

Time Range

October 2023 to January 2024

Freshness

Last updated 2026-04-28 05:55:09; freshness should be verified.

Geography

Netherlands (Dutch patients)