Why should rheumatologists evaluate the impact of rheumatoid arthritis on sexuality? Editorial

Joint Bone Spine 77 (2010) 493–495
Editorial
Why should rheumatologists evaluate the impact of rheumatoid arthritis on
sexuality?
Keywords:
Rheumatoid arthritis
Quality of life
Sexuality
The World Health Organization defines sexual health as a “state
of physical, emotional, mental, and social well-being related to sexuality”. Many rheumatologists may feel that, similar to Epicurus’
definition of pleasure, absolute well-being can be defined as the
absence of suffering in patients with rheumatoid arthritis (RA).
Above all, patients with RA need treatments that control the joint
inflammation and halt the structural disease progression. However,
the opinion of rheumatologists may fail to reflect the experience
of patients with RA. When asked about the impact of their disease,
patients with RA tend to focus on their quality of life and well-being
in the physical, psychological, and sexual domains [1]. Patients are
more likely to accept their disease and treatments if their physician shows an interest in their quality of life. However, whether
rheumatologists or other healthcare professionals should specifically discuss sexuality with their patients deserves discussion.
patients [7]. Another obstacle to open discussions about sexuality
is the common feeling of guilt and isolation experienced by the
patients, who feel they are somehow different from the norm [8].
Many patients do not spontaneously discuss their sexual problems
with their rheumatologist [9] and some of them do not even broach
the topic with their spouse [8–10].
The usual reluctance of patients to discuss their sexual problems
spontaneously contrasts with their willingness to answer specific
questions [1,8,11]. In France, two large surveys have been conducted by patient organizations. In 2007, the Association franc¸aise
des polyarthritiques mailed questionnaires to its members to collect data on their perceptions of their disease [11]. Among the
7700 patients with RA who mailed back completed questionnaires,
about 51% reported an adverse impact of the disease on their sexuality [11]. More recently, the Association nationale de défense contre l’arthrite rhumatoïde sent a questionnaire on fatigue and sexuality to its members [9]. The response rate was 38%, with more than
1200 respondents. Among the respondents, 70% reported a negative impact of RA on their sexuality and 72% reported never having
discussed their sexuality issues with a healthcare professional [9].
2. What is the impact of rheumatoid arthritis on sexuality?
1. Why is broaching sexuality issues so difficult?
Quality of life became a treatment objective only fairly recently.
Function assessment questionnaires and quality-of-life scales were
developed in the 1990s [2]. The use of these tools for evaluating
the response to treatments has increased with the introduction of
biotherapeutic agents, which improve not only the clinical inflammation and radiological disease progression, but also scores on
validated quality-of-life scales [3]. Rheumatologists are increasingly willing to discuss domains that are not directly related
to the medical management of joint diseases, such as quality
of life, fatigue, and education of patients with chronic illnesses
[4]. However, sexuality is very rarely addressed in quality-of-life
questionnaires [5] or during physician-patient interviews [6,7].
Rheumatologists explain this apparent lack of interest by time
constraints, unease when discussing sexuality, and uncertainties
about their role and competence regarding their patients’ sexuality issues [6]. Most of the nurses who are specifically trained to care
for patients with RA readily acknowledge that raising the topic of
sexuality with their patients may be helpful. However, they usually fail to discuss sexuality, because they lack time, specific skills,
or a place appropriate for holding private discussions with their
The impact of RA on sexuality has generally been evaluated using non-validated questionnaires sent in the mail or
administered during one-on-one interviews [8,10,12–16]. These
questionnaires collected data on sexuality issues and/or on factors
predicting sexual problems. The proportion of RA patients reporting sexual problems ranged across studies from 31 to 76% [17]. This
broad range is no doubt ascribable to variations in the questionnaire
items. The most commonly reported sexuality issues were difficulty having intercourse, decreased sexual desire, and decreased
frequency of intercourse [8,12,16]. These difficulties varied with
age and gender, and they were most distressing to younger males
[8,13,15,16]. Most of the patients felt their sexual problems were
related to RA. In a survey of perceptions among 830 females with RA
in Norway, 31% of patients reported no impact of RA on sexuality,
38% a moderate impact, 21% a major impact, and 10% overwhelming
sexual difficulties.
The identification of factors involved in the sexual problems of
patients with RA is challenging, given the large number of factors
involved and possible need for interpretation by a specialist [18].
Studies of factors that influence sexuality in patients with chronic
diseases have distinguished primary effects, that is, sexual difficulties related directly to the disease process itself; secondary effects,
1297-319X/$ – see front matter © 2010 Société franc¸aise de rhumatologie. Published by Elsevier Masson SAS. All rights reserved.
doi:10.1016/j.jbspin.2010.07.005
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Editorial / Joint Bone Spine 77 (2010) 493–495
in which the symptoms of the disease cause sexual difficulties; and
tertiary effects, related to the psychological and social impact of the
disease [19].
There is very little evidence that the rheumatoid process itself
may influence the ability to have sexual intercourse. Impotence
induced in males by methotrexate therapy is exceedingly rare and
cyclophosphamide may induce hypogonadism but is rarely used
by RA patients [17,20]. Fertility is not affected, although starting
a pregnancy may take more time than in healthy couples. Female
RA patients with concomitant sicca syndrome may have vaginal
dryness responsible for pain during intercourse [8,16].
Most of the sexual problems experienced by RA patients are
related to disease activity, pain, loss of joint motion, functional disability, or fatigue [17]. Other factors include depression, anxiety,
loss of self-esteem, and difficulty in discussing the disease. In a survey conducted in the UK among 74 patients with RA, fatigue was
the most often reported cause of sexual difficulties, followed by
pain and decreased joint motion [8]. A study of 271 females with
RA in The Netherlands found that stiffness, decreased joint motion,
and functional disability impaired sexual function, together with
disease activity [16]. In a clinical study of 52 Egyptian women that
focused on both disease activity and sexuality, factors significantly
associated with sexual difficulties included the tender joint count
(r = 0.56), pain (r = 0.45), and functional disability (r = 0.75) [14]. In
addition, hip involvement was significantly associated with sexual
problems [14].
3. What is the contribution of the disease to the sexual
difficulties experienced by patients with rheumatoid
arthritis?
Very few studies have compared sexuality in patients with
chronic inflammatory diseases and in controls. A few studies used
healthy volunteers [12,13,16] or the patients’ spouses [10] as controls. Among the sexual problems reported by patients with RA, it
is unclear which ones may be specifically related to the disease.
In a few studies, the prevalence of sexual problems was not higher
among RA patients than among controls [16], and a study of sexuality in adults with a history of juvenile idiopathic arthritis found no
difference with controls [21]. Sexual satisfaction may not be noticeably affected in RA patients compared to controls [10,12,13,16]. A
fairly comprehensive but early study compared 169 rheumatology
patients, including 76% with RA, to 130 matched controls [12]. The
patients reported less sexual satisfaction than before the onset of
RA. A decrease in sexual satisfaction was also found in the controls compared to the period matching the pre-disease period in
the patients (more than 10 years earlier), but this decrease was significantly smaller than in the patients [12]. No differences were
found between the patients and controls regarding the role for
psychological problems in the perceived sexual difficulties or on
the degree of performance anxiety. More surprisingly, the patients
did not have higher prevalence than the controls of damaged body
image or vaginal dryness, two classical consequences of RA [12].
However, a number of differences have been reported between
RA and controls, including diminished sexual desire [12,16], which
was consistently associated with the severity of the pain and functional disability [12,13,16]. In addition, fatigue was reported by 39%
of females and 57% of males with RA, compared to 25 and 38% of
female and male controls, respectively [12].
4. What is the role for the rheumatologist in improving the
sexual health of patients with rheumatoid arthritis?
The limited data in the literature suggest that RA patients experience sexual difficulties associated with clinical disease activity,
functional disability, and fatigue. These difficulties should be identified in each patient. Recognition by the rheumatologist and other
healthcare professionals that RA-related factors impact sexuality
has two advantages. First, the healthcare professional and patient
can discuss the patient’s experience of the disease in a variety of
domains including sexuality. Second, optimal treatment of the disease may alleviate the sexual difficulties.
Questions about sexuality asked via a self-questionnaire or
during a face-to-face interview may deserve to be among the
parameters used to monitor the course of the disease, alongside
functional capabilities, quality of life, and fatigue. In the near future,
an open and respectful discussion of sexuality will probably become
a component of the routine interview for patients with chronic
inflammatory joint diseases.
Conflict of interest statement
The authors declare no conflict of interest.
References
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Aleth Perdriger ∗
Service de rhumatologie, CHU de Rennes, hôpital sud,
16, boulevard de Bulgarie, 35056 Rennes cedex,
France
Editorial / Joint Bone Spine 77 (2010) 493–495
Catherine Solano
Service d’urologie, CHU de Cochin,
Paris, France
Laure Gossec
Service de rhumatologie B, CHU de Cochin,
Paris, France
495
∗ Corresponding
author. Tel.: +33 299 267 140;
fax: +33 299 267 190.
E-mail address: [email protected]
(A. Perdriger)
4 June 2010
Available online 20 September 2010