Clinical characteristics, healthcare use, and annual costs among patients with dystrophic epidermolysis bullosa

• Published in: Orphanet journal of rare diseases Vol. 17; no. 1; pp. 1 - 367
• Main Authors: Feinstein, James A, Bruckner, Anna L, Chastek, Benjamin, Anderson, Amy, Roman, Juan
• Format: Journal Article
• Language: English
• Published: London BioMed Central Ltd 29.09.2022; BioMed Central; BMC
• Subjects: Administrative claims; Analysis; Anemia; Antibiotics; Bacterial infections; Bandages; Cancer; Care and treatment; Comorbidity; Complications; Constipation; Cost of illness; Costs; Diagnosis; Disease; Disease burden; Dystrophic epidermolysis bullosa; Electronic health records; Electronic medical records; Emergency medical care; Epidermolysis bullosa; Health care; Infections; Malnutrition; Medicaid; Medical care; Medical care, Cost of; Medical dressings; Medical research; Mental disorders; Mental health; Mutation; Pain; Patients; Rare diseases; Resource utilization; Squamous cell carcinoma; Utilization; Wound healing; United States

Dystrophic epidermolysis bullosa (DEB) is a serious, ultra-rare, genetic blistering disease that requires a multidisciplinary care team and lifelong, proactive disease management. To organize and optimize care, we comprehensively examined diagnoses, healthcare use, and annual costs in patients with...