ACR Meeting Abstracts

ACR Meeting Abstracts

  • Meetings
    • ACR Convergence 2024
    • ACR Convergence 2023
    • 2023 ACR/ARP PRSYM
    • ACR Convergence 2022
    • ACR Convergence 2021
    • ACR Convergence 2020
    • 2020 ACR/ARP PRSYM
    • 2019 ACR/ARP Annual Meeting
    • 2018-2009 Meetings
    • Download Abstracts
  • Keyword Index
  • Advanced Search
  • Your Favorites
    • Favorites
    • Login
    • View and print all favorites
    • Clear all your favorites
  • ACR Meetings

Abstract Number: 1577

Barriers to Recruit Unaffected Family Members of  Patients with Rheumatoid Arthritis

Axel Finckh1, A. Debost-Legrand2, Martin Soubrier3, I. von Muehlenen4, I. Creveaux2, JJ Dubost3, MH Papon2, H. Ayadi5, P. Migliorini6, E. Petit-Teixeira7, F. Cornélis2 and Eprac8, 1Rheumatology, Geneva University Hospitals, Geneva 14, Switzerland, 2GenHotel-Auvergne, Clermon-Ferrand, France, 3Rheumatology, CHU CLERMONT-FERRAND, Clermont-Ferrand, France, 4Rheumatology, Universitäts-Poliklinik, Felix-Platter Spital, Basel, Switzerland, 5Sfax university, Sfax, Tunisia, 6Pisa university hospital, Pisa, Italy, 7GenHotel-Evry-EA3886, Evry, France, 8(European pre-RA consortium), Clermont-Ferrand, France

Meeting: 2012 ACR/ARHP Annual Meeting

Keywords: prevention, recruitment and rheumatoid arthritis (RA)

  • Tweet
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print
Session Information

Title: Clinical Practice/Patient Care

Session Type: Abstract Submissions (ARHP)

Background/Purpose:

Prospective studies are needed to answer key questions on rheumatoid arthritis (RA) screening in at risk populations :  (1) How accurately does risk factor assessment identify persons who will later develop RA? (2) Does screening and subsequent early treatment  improve long-term outcomes in RA? Such studies could focus on first degree relatives of RA patients (FDR-RA), as they have up to a 10 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 (J Rheumatol 2008;35:790–6).

The aim of this report is to describe the barriers encountered recruiting healthy FDRs-RA, without clinical evidence of synovitis at 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. We report the rate of FDR-RA enrollment into the study resulting from direct promotional efforts targeted to RA patients.

All participants are assessed for the absence of active synovitis (physical exam and/or questionnaire), for risk factors for RA and for biomarkers of RA susceptibility at inclusion. Participants are followed prospectively until they develop (or not) RA. In case of new symptoms suggesting incident synovitis, clinical assessment is performed by a Rheumatologist.  

Results:

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. After ~2 years of various promotional efforts to RA patients, we counted that less than 30 FDRs-RA enrolled via their diseased parent. Based on discussion with participants and RA patients, we hypothesize that RA patients are unwilling to promote strongly a screening study to their FDRs, which underscores the hereditary risk associated with this diagnosis and may arise to feelings of guilt related to the possibility of transmitting RA.

To date, a total of 977 RA-FDRs have been included: 560 in Switzerland and 317 in France, mainly through direct advertisement to unaffected FDRs in pharmacies. At inclusion, mean age is 45 years (SD 15), 74% are female and 95% are Caucasian. On average, these individuals have 1.2 direct relatives with RA. 

Conclusion:

We have observed an unexpected low inclusion rate of FDRs in response to promotional efforts targeted towards the diseased relative 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.


Disclosure:

A. Finckh,
None;

A. Debost-Legrand,
None;

M. Soubrier,
None;

I. von Muehlenen,
None;

I. Creveaux,
None;

J. Dubost,
None;

M. Papon,
None;

H. Ayadi,
None;

P. Migliorini,
None;

E. Petit-Teixeira,
None;

F. Cornélis,
None;

  • Tweet
  • Click to email a link to a friend (Opens in new window) Email
  • Click to print (Opens in new window) Print

« Back to 2012 ACR/ARHP Annual Meeting

ACR Meeting Abstracts - https://acrabstracts.org/abstract/barriers-to-recruit-unaffected-family-members-of-patients-with-rheumatoid-arthritis/

Advanced Search

Your Favorites

You can save and print a list of your favorite abstracts during your browser session by clicking the “Favorite” button at the bottom of any abstract. View your favorites »

All abstracts accepted to ACR Convergence are under media embargo once the ACR has notified presenters of their abstract’s acceptance. They may be presented at other meetings or published as manuscripts after this time but should not be discussed in non-scholarly venues or outlets. The following embargo policies are strictly enforced by the ACR.

Accepted abstracts are made available to the public online in advance of the meeting and are published in a special online supplement of our scientific journal, Arthritis & Rheumatology. Information contained in those abstracts may not be released until the abstracts appear online. In an exception to the media embargo, academic institutions, private organizations, and companies with products whose value may be influenced by information contained in an abstract may issue a press release to coincide with the availability of an ACR abstract on the ACR website. However, the ACR continues to require that information that goes beyond that contained in the abstract (e.g., discussion of the abstract done as part of editorial news coverage) is under media embargo until 10:00 AM ET on November 14, 2024. Journalists with access to embargoed information cannot release articles or editorial news coverage before this time. Editorial news coverage is considered original articles/videos developed by employed journalists to report facts, commentary, and subject matter expert quotes in a narrative form using a variety of sources (e.g., research, announcements, press releases, events, etc.).

Violation of this policy may result in the abstract being withdrawn from the meeting and other measures deemed appropriate. Authors are responsible for notifying colleagues, institutions, communications firms, and all other stakeholders related to the development or promotion of the abstract about this policy. If you have questions about the ACR abstract embargo policy, please contact ACR abstracts staff at [email protected].

Wiley

  • Online Journal
  • Privacy Policy
  • Permissions Policies
  • Cookie Preferences

© Copyright 2025 American College of Rheumatology