Copenhagen, Denmark, Friday 12 June 2009: Patients with rheumatic diseases want more information and better communication with healthcare professionals on the sexual issues related to their conditions, according to the results of a new study presented today at EULAR 2009, the Annual Congress of the European League Against Rheumatism in Copenhagen, Denmark.
However, a second study shows that, although nurses understand the importance of addressing sexual health with their rheumatology patients as an integral part of their care, the nurses' own embarrassment in having such conversations can hinder them in proactively raising the issue.
The sexual relationships of people with rheumatic diseases can be impaired not only by physical symptoms, such as pain, fatigue and disability, but also by feelings of self consciousness and discomfort. Historically, poor communication between patients and healthcare professionals and a lack of clinical guidelines about the effects of rheumatic diseases on sexual issues, have hindered the resolution of such problems.1-3
In the first qualitative study of 23 rheumatoid arthritis (RA) patients, the respondents reported that sexual issues or relationships, in the context of their rheumatic disease, had not been part of their rheumatological healthcare, but they nonetheless considered it a relevant topic that should be included. Furthermore, a lack of information given on the potential sexually-related side effects of medication, such as erectile dysfunction and reduced libido, was identified. When reporting to their rheumatologist, the male patients reported a lack of knowledge or interest in such potential side effects from their healthcare professional.
The patients in the study believed that sexual issues should be addressed as part of the rheumatic healthcare, but sufficient time and an individually adjusted approach were required. A need for variation in information sources and settings for the communication on sexual issues was identified, such as individual conversations with a health professional, group sessions and written material. A simple screening and referral to appropriate and trained staff for specific time to raise sexually related questions was also suggested, together with a need for basic information about possible disease-related effects on sexual-related areas. The patients wanted their healthcare professionals to be better informed and aware of sexual issues and the impact on their relationships, in relation to rheumatological conditions.
In the second study, qualitative interviews with six rheumatology nurses identified four key categories experienced in the management of sexual issues in rheumatology practice:
- Patient-initiated conversation: The patient asks the nurse about a sexual problem
- Patient-initiated conversation: The patient acts in an inappropriate or sexual manner during the consultation (e.g. experiences arousal or makes sexual advances towards the nurse)
- Nurse-initiated conversation: The nurse is experienced in rheumatological disease-related sexual issues
- Nurse-initiated conversation: The nurse has an intuitive impression that the patient is encountering problems of a sexual nature
Nurses agreed that the first two themes, where the patient takes the lead, are situations that can lead to embarrassment, but that it is still preferable to them that the patient proactively raises the topic themselves. The latter two themes, where the nurse takes the lead, are situations in which nurses often choose not to share their professional experiences with the patient and not to follow their intuition, as they do not always feel that experience and intuition are sufficient to initiate a conversation on sexual issues.
Mrs Lene Sigaard of the Copenhagen University Hospital, Glostrup, Denmark, who conducted the nurse (second) study, said: "Nurses are uniquely positioned to raise the subject of sex with their rheumatology patients, explaining the reasons for any problems and how they might be rectified. Equipping nurses with better information about these types of problems may help them to overcome their own embarrassment and reluctance to initiate this type of dialogue. We hope that our study will contribute to the development of a professional approach towards sexual topics."
In the first patient-oriented study, from Diakonhjemmet Hospital, Oslo, Norway, 19 individual semi-structured interviews and two focus group interviews were conduced with 23 rheumatology patients aged 29-66 years, mean 44 years; disease duration 2-34 years) (including those with rheumatoid arthritis, juvenile rheumatoid arthritis, spondylarthropathy; 13 men, 10 women) who had been recruited by purposeful sampling from the in-and-out-patients clinics at Diakonhjemmet Hospital and by postal request. The development of the interview guide was informed by a literature review and discussions with a patient and healthcare professional resource group. The results are preliminary, the data have been coded, condensed and further analyses are ongoing.
In the second study of nurses, from Denmark, qualitative data was analysed on the basis of Hermeneutic Theory and inspired by Grounded Theory and Discourse Analysis, to interpret the results and identify commonalities.
References
1.Esselens G, .Enzlin P, Borms R, Westhovens R, Demyttenaere K. Sexual dysfunction in patients with rheumatoid arthritis: a controlled study. (suppl.) ed. Ann Rheum Dis; 2004. p. 184
2.Pirildar T, Muezzinoglu T, Pirildar S. Sexual function in ankylosing spondylitis: a study of 65 men. J Urol 2004 Apr;171(4):1598-600 Hill J, Bird H, Thorpe R. Effects of rheumatoid arthritis on sexual activity and relationships. Rheumatology (Oxford) 2003 Feb;42(2):280-6
For further information on this study, or to request an interview with the study lead, please do not hesitate to contact the EULAR congress press office on:
Email:eularpressoffice@uk.cohnwolfe.com
Rory Berrie: Onsite tel: +44 (0) 7894 386 425
Camilla Dormer: Onsite tel: +44 (0) 7876 190 439
Abstract number: FRI0569-AHP and OP-0106-AHP
About EULAR
- The European League Against Rheumatism (EULAR) is the organisation which represents the patient, health professional and scientific societies of rheumatology of all the European nations.
- In line with The European Union of Medical Specialists (UEMS), EULAR defines rheumatology as including rheumatic diseases of the connective tissue, locomotor and musculoskeletal systems.
- The aims of EULAR are to stimulate, promote, and support the research, prevention, treatment and rehabilitation of rheumatic diseases. To this end, EULAR fosters excellence in education and research in the field of rheumatology. It promotes the translation of research advances into daily care and fights for the recognition of the needs of people with rheumatic diseases.
- In 2009, The EULAR Executive Committee launched the EULAR Orphan Disease Programme (ODP) which aims to provide funding to research programmes focused on furthering understanding of the disease mechanisms behind systemic sclerosis. Please see www.eular.org for further information.
- Diseases of the bone and joints such as rheumatoid arthritis and osteoarthritis cause disability in 4-5% of the adult population and are predicted to rise as people live longer.
- As new treatments emerge and cellular mechanisms are discovered, EULAR 2009 is set to be the biggest rheumatology event in Europe with over 13,500 scientists, physicians, allied health professionals, and related audiences in attendance from over 100 countries. Over the course of the congress, more than 300 oral and 1,700 poster abstract presentations will be featured, with 780 invited speaker lectures taking place in more than 150 sessions.
- To find out more about the activities of EULAR, visit: www.eular.org