Rheumatoid arthritis and sexuality: A patient survey in France

Rheumatoid Arthritis (RA) was one of the first diseases where quality of life (QoL) measurements were included in clinical trials in the mid-eighties [1]. Today investigating patient-reported outcomes has become standard in clinical research and a number of measures are routinely included in trials [2].

Yet, with ever more effective anti-inflammatory and disease modifying treatments available to the treating rheumatologist, the focus in clinical practice is more on control of those objectively measurable disease symptoms such as disease activity targeted by these treatments than on the more subjective and less obvious parts of patients’ well-being. While the relationships between QoL and inflammation, pain and functional limitations have been shown [3‐5], control of these symptoms may not fully restore all physical, social and mental aspects of QoL. Studies in France on these topics are rare. The international literature provides an overview of issues such as fatigue, depression, sleep disorder, coping [6‐11] and social interactions, family life and sexuality [12‐15]. In a survey among French patients around half answered that RA impacted negatively on their family life and/or sexuality [16]. In another observational study in France 80% of patients spontaneously reported fatigue as the most difficult aspect to cope with in daily life, while 15% indicated problems with sexuality [17].

The objectives of the current study were therefore to investigate the impact of RA on patients’ intimate and sexual relationships and identify significant factors such as functional handicap, pain and in particular fatigue that may lead to problems. In order to better isolate problems caused by RA, the study attempted to include a control group from the normal population.

Difficulties in sexual relationships have been mentioned in surveys among patients with RA as an aspect of the disease that is difficult to cope with. However, no study has investigated this in depth in France and the French patient association ANDAR thus decided to perform a specific study on RA patients’ sexuality. Research on fatigue – which is also often mentioned as a very difficult and handicapping aspect of RA - was primarily included because of a hypothesis that fatigue would negatively impact on sexual activity. The results in our study indicate, however, that the impact is not significant. We would argue that the reason for this is the strong impact of physical function (HAQ) which is a significant predictor for having sexual activity or not, but is also correlated with fatigue.

However, with a relatively scattered picture of research on fatigue in RA patients, fatigue is also interesting as a research topic in its own right. Indeed, fatigue was significantly correlated with most disease variables collected in the study: patients with higher fatigue scores had also a higher HAQ, higher disease activity, worse general health, worse pain, more depressed mood and worse quality of life (utility). Among these, HAQ was a strong driver of fatigue, with scores around 3-4 at low HAQ levels to 7 at higher HAQ levels. This confirms the correlation between HAQ and fatigue as reported by patients in an earlier survey [17], but other data on this relationship are scarce. A British study reported similar proportions of patients with fatigue (80%), but found that fatigue reflected pain and signs of depression, not disease activity; functional status was not investigated [9].

An interesting finding was that patients who were working were less fatigued than those working, but also had a lower HAQ. Thus, fatigue and HAQ together have a significant impact on whether a patient can remain in the workforce or not. Contrary to this, controls who were working had significantly more fatigue than those not working. Fatigue may thus be simply a consequence of working for a population in this age group, but one of drivers of being able to work or not for patients.

Previous experience with patient surveys in France indicates answer rates between 30% and 50%. In light of this, and the delicate subject, the overall answer rate of 38% in this survey, with a 90% completion rate for the part sexuality appears excellent and indicative of the importance of this topic to patients. However, the size of the problem is difficult to assess without a comparator group – and such a group is difficult to study, with the limited means of a patient association. We therefore decided to ask a random group of patients to hand the questionnaire to an acquaintance of theirs. The hypothesis that this would provide a sample with similar characteristics as the patients proved correct, although the low number of respondents (12%) was somewhat of a disappointment. Nevertheless, we believe that even the small control group provides insights into the part played by RA in sexual difficulties.

Controls and patients were similar in their demographics, but controls had a surprisingly high number of diseases (59% with an average of 1.1 diseases). This is only slightly less than the co-morbidities of the patients (62% with an average of 1.4 diseases other than RA), and we can assume that this exerts a similar effect in both groups. Significantly fewer patients below 60 (the official retirement age in France) were working than controls, 55% versus 74%, and we would argue that RA is the cause for this difference.

More controls were sexually active, but the difference was small in the population below 55 years. This appears logical, as at that age many patients still have relatively mild RA (mean HAQ 0.97 compared to 1.31 above 55). However, the difference becomes significant at ages above 55: 10-20% fewer patients have sexual activities, with the differences particularly striking for women. As potential issues with age and menopause cannot be different between the two female groups, this difference can thus be considered to be due to RA. Only one other study on sexual activity included a control group [15] and findings were similar.

Few individuals had addressed the issues with a health professional (36% of controls and 18.5% of patients) and those who hadn’t discussed it, were reluctant to do so. However, as more research into this topic is performed, arguments in favor of a more open dialogue between patients and treating physicians might emerge [26].

Our patient sample may, although it is representative of the structure of the patient association, not be entirely representative of the overall RA population in France. Members of patient associations are often older, with longer disease duration and possibly more severe disease, as it takes time before they join. Another issue appears to be the more frequent than average treatment with biologics in the sample. This can likely be partly explained by the longer disease duration and hence advanced disease with patients having failed a number of DMARDs over time. It is also possible that patients on biologics are more aware of issues and more motivated to participate in surveys. A similar picture had emerged in the earlier economic survey performed by ANDAR [17]. This does in our view not diminish the value of the information obtained from the sample.

Studies carried out by official patient organizations with their own members do not require approval by ethics committees in France. However, the study has been declared to the French Commission for Information and Liberty (CNIL).

GK has been the lead investigator and author of the manuscript, BTR has been responsible for study administration and in field work, SM has been a member of the scientific committee and has supervised the development of the section on sexuality in the patient questionnaire, ASW has been a member of the scientific committee responsible for patient view and input into the development of the questionnaire, DRB has been responsible for supervision of in-field work, AP has been a member of the scientific committee, YM has been a member of the scientific committee, BC has been a member of the scientific committee, All authors read and approved the final manuscript.