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AB0225 Recruitment difficulty for unaffected rheumatoid arthritis relatives due to misplaced guilt ?
  1. F. Cornelis1,
  2. A. finkh2 on behalf of EPRAC and European Pre RA Consortium
  1. 1GenHotel-Auvergne, Auvergne University, Clermont-Ferrand, France
  2. 2Rheumatology & Clinical Epidemiology, Geneva University Hospital, Geneva, Switzerland

Abstract

Background Prospective studies are needed to answer key questions on rheumatoid arthritis (RA) screening in at risk populations: 1. Is it possible to identify persons who will later develop RA? 2. Does screening and subsequent early treatment improve long-term RA outcomes? Such studies could focus on first degree relatives of RA patients (FDR-RA), as they have up to a 8 fold increase of RA incidence compared to the general population. The number of potential FDR per RA patient has been measured to be 6.9 per RA patient (1)

Objectives To describe barriers encountered recruiting healthy FDRs-RA, without clinical evidence of synovitisat inclusion, in a prospective cohort study of individuals at increased risk of developing RA

Methods The initial recruitment strategy for this prospective cohort of individuals at increased risk of developing RA relied on the diseased relatives with RA. Patients with RA were informed of the possibility of a free screening test of RA susceptibility for their unaffected family members. Promotional efforts targeted to RA patients. In 2010-11, the new screening study was advertised massively amongst RA patients in Switzerland and France per mail, patient conferences, health fares and articles in patient journals. The 6000 RA patients in the Swiss cohort of RA patients and 5300 RA patients of the French patient association (AFP) were directly incited to invite their FDR to participate in this screening study

Results 1077 inclusions were obtained, 663 in Switzerland and 414 in France

Conclusions We have observed an unexpected low inclusion rate of FDRs in response to promotional efforts targeted towards the diseased relatives with RA. Informal investigation strongly suggests that the main explanation is the lack of transmission of information from the RA patients to their unaffected FDR, which appears to be linked to a feeling of guilt in relation with a hereditary disease. More investigation is needed on the transmission of information within RA affected families in order to enhance future preventive strategies.

  1. - J Rheumatol2008;35:790–6

References

Acknowledgements EPRAC participants co-authors : Anne Debost-Legrand(1), Martin Soubrier(1), InesVon Mühlenen(2), Isabelle Creveaux(1), Jean-Jacques Dubost(1), Brigitte Vennat(3), Julie-AmélinePlacide (1, 4), Damien Richard (5), Marie-Hélène Papon (3), Sylvain Mathieu (1), FarèsMoustapha (1), Jeannot Schmidt (1), Christine Francannet(1), Pascale Dewachter(1), Meriem Tadjeddine(1,4), Valérie Chaudru(4), Thomas Bardin(1), RB Mûller(2), B Möller(2), J Dudier(2), D Kyburz(2), U Walker (2), S Bas (2), FredericoPratesi(6), Abdellatif Maalej(7), AthanBaillet (8), Candice Trocmé(8), Cem Gabay(2), HammadiAyadi(7), Paola Migliorini(6), Elisabeth Petit-Teixeira(4)

  1. GenHotel-Auvergne-EA4679

  2. Groupe des Rhumatologues de la Suisse coordonné par Axel Finckhau CHU de Genève

  3. Faculté de Pharmacie, Clermont-Ferrand

  4. GenHotel-Evry-EA3886

  5. CHU de Clermont-Ferrand

  6. Université de Pise

  7. Université de Sfax

  8. CHU de Grenoble

Acknowledgements

Disclosure of Interest None Declared

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