Session Title: Clinical Practice/Patient Care
Session Type: Abstract Submissions (ARHP)
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.
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.
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.
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.
I. von Muehlenen,
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ACR Meeting Abstracts - https://acrabstracts.org/abstract/barriers-to-recruit-unaffected-family-members-of-patients-with-rheumatoid-arthritis/