Oral Presentation 2015 Annual Meeting of the Australasian Society for Dermatology Research

The Rurality of Patients with Epidermolysis Bullosa in Australia: A Cross Sectional Study (#27)

Adam G Harris 1 2 , Nancy Todes-Taylor 3 4 , Dedee F Murrell 1 2
  1. Department of Dermatology, St George Hospital, Sydney, New South Wales, Australia
  2. Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia
  3. The Poche Centre for Indigenous Health, The University of Sydney, Sydney, New South Wales, Australia
  4. Medical Group, Kaiser Permanente, San Rafael, California, United States of America

Objectives:

To analyse the geographical distribution of patients with Epidermolysis Bullosa (EB) in Australia to determine how relevant the disadvantage of living in regional and remote areas with reduced access to specialised medical care is to this population. 

Method:

A total of 318 living patients with EB in Australia, attained from the National Diagnostic Laboratory Database and the Australasian EB Registry were analysed. Rurality was determined by categorising the postal codes of patients using the Australian Standard Geographical Classification - Remoteness Areas (ASGC-RA) classification. An analysis of EB subtypes and whether it was a severe form were also performed.

Results:

221 patients lived in major cities, 65 in inner regional areas, 26 outer regional areas, four in remote and two in very remote areas, giving percentages of 69.5%, 20.4%, 8.2%, 1.3% and 0.6% respectively. Fifty percent of patients living in remote and very remote areas had severe forms of EB.

Conclusions:

A significant proportion of patients with EB live outside of the major cities in Australia. Interestingly half of patients living in remote and very remote areas had severe forms of EB. Based on this geographical distribution, targeted strategies to improve access to EB-specific medical care may be needed for patients living in rural and remote areas.