M. Dziadzio¹, K. Fligelstone², R. Smith¹, S. Ensz³, C. Denton¹, C. Black¹

¹Centre for Rheumatology, Royal Free Hospital, ²Chair, Scleroderma Society, London, United Kingdom, ³International Scleroderma Network, Edina, MN, United States

Abstract: BACKGROUND: Scleroderma is a rare connective tissue disease diagnosed worldwide. There are only a few specialist centers and the care and support for patients is still limited. New strategies for delivering information and support are being developed. In this, patient support groups are invaluable as well as providing a link between patients and health professionals. Their presence is, however, restricted to the developed countries. The Internet is an easy and quick way of communication and is a powerful source of information.

Aim: 1) To compare the inquiries received by the Scleroderma Society (SS) UK with those received by the International Scleroderma Network (ISN), the latter presented at EULAR 2003 (1).

Method: E-mail questions submitted to the Scleroderma Society (6 months, n = 68) and Medical Committees of ISN (over 3 months, n = 166) were categorised on the basis of information requested and analysed retrospectively. Differences were analysed using the 2-test and significance was set at p<0.001.

Results: Demographics are shown in Table 1. Between ISN and SS there was a significant difference in language of submission (with 37% of inquiries to ISN in 7 major languages other than English and 100% in English to SS) and geographical location. Medical professionals contributed 10% of inquiries (Table 1). ISN attracted a significant interest from countries other than UK and USA (35%); SS had mostly UK inquiries (66%). Over 40% of the inquiries related to medical issues.

Conclusions: This analysis shows a similar pattern of questions submitted to both organisations and highlights the main areas of information requested. There is an inevitable bias towards countries with Internet access. Worldwide collaboration of medical professionals with patient organisations should lead to a better understanding of clinical needs and better support. Web presence and e-mail contacts should be used by patient organisations in order to improve the quality and availability of support.

Reference:

1. M. Dziadzio, R. Smith, S. Ensz, L. Ydler, J. Jackson, K.J. Howell, C.J. Knight, C.M. Black. A pilot database analysis of enquiries submitted to the medical committee of an International Scleroderma Website. Ann Rheum Dis Suppl: EULAR 2003 FRI0078.