SL0003   INTERNET AS A TOOL FOR PATIENT SUPPORT GROUPS TO PROVIDE QUALITY INFORMATION
M. Dziadzio¹, K. Fligelstone², R. Smith¹, S. Ensz³, C. Denton¹, C. Black^1
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 few specialist centres 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 organisation 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.

Table:

Table 1: Inquirer demographics and breakdown of questions
Ý	ISN%SS%QuestionsISN%	SS%
SexFemale 72 75 Treatment available20	13
Male 17 18 General information19	32
Status Patient 36 43 Referral centre17	16
Relative/Friend49 44 Diagnostic doubt11	11
Medical professional 10 12 Prognosis 6	5
DiseaseSystemic sclerosis 71 71 Other 6	2
Localised scleroderma 20 15 Alternative treatment6	1
Other 9 14 Therapeutic doubt5	0
LocationNorth America 41 15 Local support 3	9
Europe 24 75 Novel treatment3	2
South America 19 0 Pregnancy 3	1
Asia Australia Africa16 10 Genetics 1	8