Quality of Life and Economic Burden in Recessive Dystrophic Epidermolysis Bullosa.
- Author:
In Kyung JEON
1
;
Hye Rang ON
;
Soo Chan KIM
Author Information
- Publication Type:Original Article
- Keywords: Dressing; Economic burden; Quality of life; Recessive dystrophic epidermolysis bullosa
- MeSH: Bandages; Blister; Dermatitis, Atopic; Epidermolysis Bullosa Dystrophica*; Female; Humans; Lichen Planus, Oral; Male; Neuralgia; Parturition; Prurigo; Pruritus; Quality of Life*; Urticaria; Weights and Measures
- From:Annals of Dermatology 2016;28(1):6-14
- CountryRepublic of Korea
- Language:English
- Abstract: BACKGROUND: Patients with recessive dystrophic epidermolysis bullosa (RDEB) exhibit blisters and erosions since birth, causing pain, pruritus and various complications. RDEB affects quality of life (QoL) in physical, emotional and social aspects. Furthermore, interminable dressing changes and supportive therapies impose a significant economic burden on the patient's family. OBJECTIVE: We assessed the QoL and economic burden in patients with RDEB. METHODS: Sixteen patients with RDEB were surveyed to assess the QoL and economic burden. Patients answered questionnaires consisting of a visual analogue scale (VAS) on pain and pruritus, Skindex-29, Quality of Life in EB questionnaire (QOLEB), and the economic burden due to EB. RESULTS: Thirteen patients with RDEB completed the questionnaire. Female patients presented higher VAS, QOLEB and total Skindex-29 scores than male patients. Patients with RDEB showed severe levels of pruritus, which was more intolerable than pain. Mean VAS score on pain in RDEB was higher than in oral lichen planus and post-herpetic neuralgia. VAS score on pruritus was similar to those in chronic urticaria, atopic dermatitis, and prurigo nodularis. Compared with other dermatologic conditions, patients with RDEB were profoundly affected in all three scales of skindex-29. Mean "medical cost" in a month was $257.54 (USD) (+/-169.39) and mean "dressing cost" was $358.41 (USD) (+/-312.55), which was negatively related to patient age. CONCLUSION: RDEB had a profound impact on QoL and economic burden. Compared with other dermatologic diseases, RDEB showed severe symptoms and QoL was seriously impaired. Most patients sustained economic burdens, especially on preparing dressing materials. Younger patients experienced more economic burdens.
