Advanced Search Abstract Objectives. The primary aim of this research was to assess patients' perceptions of the effects of rheumatoid arthritis RA on their sexual relationship and sexual activity, the causes of any difficulties and who they would turn to for help. Poor communication was a major problem, patients being reluctant to approach health professionals and vice versa. The topic of sexual relationships was broached with patients attending one nurse practitioner's clinic, but only one other patient had ever been offered any discussion.
RA impacts on the sexual lives of a large minority of patients and this is a problem that patients and health professionals are reluctant to discuss face to face. However, patients do appear to be willing to complete questionnaires and this may be an acceptable format for assessment. Further training and support is needed by nurses and other health professionals in this sadly neglected area.
The reality of living with illness impacts on the sexuality of many patients [ 1 ]. This is particularly so with a disease such as rheumatoid arthritis RA as it is a chronic, systemic, inflammatory condition that is both painful and potentially physically disabling. RA can affect almost every domain of life, including relationships and sexual function. Nurses often play a central role in the care of rheumatology patients, providing holistic care, but sexuality remains an area that many feel unable to discuss [ 2 , 3 ].
This is unfortunate, as sexuality is an important aspect of the lives of the majority of people. Sexuality has been described as an essential part of the whole person, an integral part of being human, including one's total sense of self [ 4 ], and is linked to the quality of life of the individual [ 5 ]. Sexuality is a complex aspect of human life, comprising much more than the act of sexual intercourse [ 4 ]. In Freud described the distinction between sex and sexuality thus: It is therefore imperative that nurses raise the subject of sexuality with their patients and it has been suggested that all practising nurses should reflect on whether they are addressing this topic adequately [ 1 , 8 ].
There is an abundance of research into the effects on sexuality of chronic diseases such as diabetes and renal disease [ 9 ], but there is relatively little pertaining to sexuality and RA. The research to date suggests that some patients experience problems within relationships and this occurs more frequently if the disease presents within an established relationship [ 11 , 12 ].
Some studies have focused on the frequency of sexual intercourse and satisfaction with it. One early study demonstrated a lower frequency of sexual intercourse, orgasm and decreased sexual desire in females following the onset of RA [ 13 ]. These results were not entirely substantiated by two later controlled studies that found no difference in the frequency of intercourse between patients with RA and healthy controls [ 14 , 15 ].
The study by Elst et al. Other authors have reported similar findings [ 16 ]. There has been some research into the effects of the symptoms of RA on patients' sexual lives. Loss of physical function, fatigue and pain have been shown to interfere with sexual pleasure [ 14 , 17 ]. The former study [ 14 ] reported that patients with RA preferred shortened foreplay and time to reach orgasm because of increased pain.
The higher the level of pain, physical disability and depression, the greater the effect on sexuality, regardless of gender [ 9 ]. The aims of this study were to investigate the patients' perceptions of i the effects of RA on their sexual relationship; ii the effects of RA on sexual activity; iii the causes of any difficulties; and iv which health professionals patients consider to be appropriate confidant e s.
Main study The final questionnaire was distributed via a rheumatology nurse practitioner or junior hospital doctors' clinic to 74 patients with RA who were participating in a study of outcome.
The inclusion criteria admitted any patient over 18 yr of age with a positive diagnosis of RA. The literature search revealed a questionnaire specifically developed for use with patients who have arthritis [ 17 ].
Scrutiny of the tool by researchers and patients revealed that additional questions and alterations to the language were required and so permission for these changes was obtained. Patients were informed about the content and asked to complete it at home and return it in a prepaid envelope; none refused.
Patients were assured of anonymity and advised not to include their name if they did not wish to be identified. Two independent analysts scrutinized the handwritten replies several times and each constructed a list of words and themes.
The lists were then compared for words and themes common to both, and these were then categorized. The themes that emerged from the data were illustrated with patient quotations. Results Pilot study Demographic data from the pilot study are shown in Table 1. Patients were asked to complete the questionnaire and then interviewed by a researcher, who asked about its readability, face validity, comprehensiveness and ease of completion.
None thought the questionnaire was too embarrassing to complete or suggested that any additional items should be included. All 10 patients found it easy to read and physically easy to complete and so this was considered to be a suitable version for use Appendix 1.