Survey of digital ulcers and Scleroderma

The Scleroderma Society very kindly co-operated with us in a simple survey of digital ulcers in patients with Scleroderma. We have now completed that survey, and as promised, I enclose a brief summary of what we found.

Alan J Silman

Prevalence, Risk Factors and Effects on Quality of Life of Digital Ulcers in Scleroderma Patients

Asim Aqil, Medical Student, Alan J Silman, Professor of Rheumatic Disease Epidemiology

Although digital ulcers are well recognised features of scleroderma there is little information on the risk factors associated with their development or on their effects on everyday life. The aim of the study was to look at the prevalence and problems associated with digital ulcers in scleroderma patients. Members of the Scleroderma Society kindly completed an 18 question survey which was then analysed by researchers at Manchester University.

102 members of the society were randomly selected and posted a questionnaire with 68 members responding with the majority (81%) of responders being female. The average age of the responders was 62 years, ranging from 36 to 86 years. Disease onset ranged from 23 to 77 years with an average of 49 years. There were more people with limited (57%) than diffuse (43%) scleroderma.

The prevalence of digital ulcers was 37%, supporting the view that digital ulceration in scleroderma is common. Ulcers developed mostly in the fingertips but were also reported in the knuckles and palms. Some members reported ulcers prior to disease diagnosis. The majority of people (88%) developed their first ulcer within two years of disease diagnosis. Ulcers were likely to reoccur every one to six months and usually healed in one to two months.

There was no difference in ulcer development between males and females or between the two forms of the disease. Although the numbers of smokers in the study was small it was interesting to note that past heavy smoking was associated with ulcer development.

Digital ulcers were found to adversely affect quality of life in all the areas studied. Over 80% of the people with ulcers found they affected their work and hobbies and domestic cleaning. Food preparation and hygiene were affected to a lesser degree and even eating was reported to be adversely affected by 30%.

In summary digital ulcers commonly occur in scleroderma and adversely affect the patient's quality of life. This was a preliminary research project and researchers at Manchester together with colleagues from Royal Free, Bath and Leeds are now looking at ways of improving the diagnosis of ulcers to gain a better understanding of their development and methods to help sufferers in the future.

We are most grateful for the Scleroderma Society's help in completing this work.