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PARE0014 National rheumatoid arthritis society survey: impact of ra on the emotions, intimacy & relationships
  1. C. Jacklin1,
  2. A. Bosworth2
  1. 1External Affairs
  2. 2CEO, NRAS, Maidenhead, United Kingdom

Abstract

Background The NRAS 2012 survey RA & the Impact on the Family3 highlighted that there was little or no support for people living with RA to help with issues on emotions, relationships and intimacy. 41% had difficulties in their close relationships as a direct result of RA and 67% said that their sex life had been negatively affected. NRAS undertook to research more imaginative ways to provide information and support on the topic of close relationships and is producing a booklet and online resource on “RA & Relationships”. A study in France in 2012 showed that while it is known that RA has a negative impact on patients’ sexuality, there have been few attempts to quantify the problem. That study triggers the question how to include this topic into care2

Objectives To produce a resource for health care professionals, patients and partners/spouses to address the issues around RA and relationships

Methods Independent Health Journalist, Kate Wilkinson and Psychotherapeutic Counsellor, Sarah Collins were commissioned to work with NRAS on this project. Initially a focus group on the topic of emotions and RA was attended by 8 patients and one spouse. Being independently facilitated allowed people to speak openly and anonymously. Subsequently 2 teleconference focus groups with 16 people explored in more depth the issues around sex and intimacy. Thirdly, an online questionnaire was hosted on the NRAS website and promoted via NRAS social media sites. The survey evaluation will help shape the structure of the booklet and the NRAS online resource. Real life stories captured via qualitative interviews form the sections of this new NRAS resource to be launched at BSR 2013.

Results The online survey resulted in a staggering 1343 completed questionnaires. Key findings from the survey were: 46% of those living with RA and in a relationship reported not being happy with their sex life; single people in the survey reported they believe that having RA puts people off having a relationship with them. 94% of people with RA described feeling “frustrated” and 80% said they feel or have felt “anxious” about their RA. A common issue identified in the 3 focus groups and the survey results was that RA affects your sense of self-belief and self-esteem, and it’s hard to feel sexy. Key messages were that the resource should make it clear that all feelings are OK; there is no ‘;magic recipe’ or standard way of dealing with RA; it is a personal and continual process of adjustment.

Conclusions This NRAS booklet and online resource will be an interactive tool for individuals and their health care professionals to assist the discussion of sensitive and difficult topics. Containing real-life experiences will help the user relate to the issue and find tangible ways to address problems that may arise in their relationships.

  1. Kobelt G, Texier-Richard B, Mimoun S, Woronoff AS, Berthelon DR, Perdriger A, Maugard Y, Combe B; BMC Musculoskeletal Disorders 13 (1), 170 (Sep 2012) Rheumatoid Arthritis and sexuality

  2. NRAS Impact on the Family Survey 2012

Acknowledgements Thanks to Kate Wilkinson, Sarah Collins and Tessa Sanderson

Disclosure of Interest None Declared

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