Oral Health Status and Quality of Life in Austrian Epidermolysis Bullosa Patients

14 participants with a genetic diagnosis of Epidermolysis bullosa in Austria were assessed for oral health status, treatment needs, and oral health-related quality of life. The study used a cross-sectional, mixed-methods design combining clinical assessments with standardized questionnaires like OHIP-14, COHIP, iscorEB-p, and QOLEB. Results indicate recessive dystrophic EB (RDEB) patients exhibited poorer quality of life scores and higher dental treatment needs compared to other subtypes.

Use Cases

• Analyzing the correlation between EB subtype and oral health-related quality of life based on iscorEB-p and QOLEB scores.
• Investigating the prevalence of specific oral treatment needs (preventive, restorative, speech therapy) among EB patients.
• Studying the relationship between compromised oral function and patient-reported outcomes using mixed-methods data.

Strengths

• Includes data from 14 genetically confirmed EB patients, a rare disease cohort.
• Combines quantitative clinical assessments with qualitative data from open-ended questions.
• Uses multiple standardized questionnaires (OHIP-14, COHIP, iscorEB-p, QOLEB) for measurement.

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 (142.7 KB), indicating a limited scope from a pilot study.

Provenance

Source

figshare

Collection Method

Cross-sectional, mixed-methods pilot study with purposive sampling, combining clinical assessment with questionnaires.

Freshness

Last updated 2026-05-04 05:32:51; freshness should be verified.

Geography

Austria