**1. Introduction**

214 Rheumatoid Arthritis – Etiology, Consequences and Co-Morbidities

Selye H 1949 Further studies concerning the participation of the adrenal cortex in the

Selye H 1950 The Physiology and Pathology of Exposure to Stress, 1st edition. Acta inc

Short CL. The antiquity of rheumatoid arthritis. Arthritis Rheum. 1974 May-Jun; 17(3): 193-

Silman A. Epidemiology and rheumatic diseases. In: Maddison P, Isenberg D, Woo P, Glass

Simon GE, Goldberg DP, Von Korff M, Ustun TB. Understanding cross-national differences

Simon-Thomas, J., Kamman, T.J., Silverman, P.S., & Rothman, W. Child Coping Moderates

Singh JA, Noorbaloochi S, Singh G. Golimumab for rheumatoid arthritis. Cochrane Database

Slattery JM, Kromer AM, Kifer S, Miller C. Gender-specific use of natural coping strategies

Sleath B, Chewning B, de Vellis BM, Weinberger M, de Vellis RF, Tudor G, Beard A.

Soderlin MK, Hakala M, Nieminen P. Anxiety and depression in a community-based rheumatoid arthritis population. Scand J Rheumatol 2000; 29: 177-83. Stastny P. Association of the B-cell alloantigen DRw4 with rheumatoid arthritis. N. Engl J

Timonen M, Villo K, Hakko H, Sarkioja T, Ylikulju M, Meyer-Rochow VB, et al. Suicides in

Vali FM, Walkup J. Combined medical and psychological symptoms: impact on disability and health care utilization of patients with arthritis. Med Care 1998; 36: 1073-84. VanDyke MM, Parker JC, Smarr KL, Hewett JE, Johnson GE, Slaughter JR, et al. Anxiety in

Van Gaalen FA, Linn-Rasker SP, Van Venrooij WJ, et al. Autoantibodies to cyclic

Wynn Parry CB, Nichols PJR, Lewis NR. Meniscectomy: a review of 1,723 cases.

Zaphiropoulos G, Burry HC. Depression in rheumatoid arthritis. Ann Rheum Dis 1974; 33:

persons suffering from rheumatoid arthritis. Rheumatology (Oxford) 2003; 42: 287-

citrullinated peptides predict progression to rheumatoid arthritis in patients with undifferentiated arthritis: a prospective cohort study. Arthritis Rheum 2004;50:709-

visits Arthritis Care and Research 2008Volume 59 Issue 2: 186-191

Still GF. On a form of joint disease in children. Med Chir Trans 1897; 80:47–59.

Turner CD 1955 General Endocrinology, 2nd edition. WB Saunders Co. Philadelphia

D, editors. Oxford Textbook of Rheumatology. Oxford: Oxford University Press,

the Effects of Interparental Conflict on Child Adjustment. Poster session presented at the Society for Research in Child Development Biennial Meeting, Minneapolis,

and their perceived effectiveness. Boston: Eastern Psychological Association annual

Communication about depression during rheumatoid arthritis patient

pathogenesis of arthritis. British Medical Journal 2; 1129

in depression prevalence. Psychol Med. 2002;32(4):585-594.

Syst Rev. 2010 Jan 20;(1):CD008341. Review.

Montreal.

1998: 811-828.

Minnesota, (2001) 19-22.

meeting publication 2002.

Med 1978; 298:869-871.

RA. 2004;51: 408-12.

Rheumatology 1958;4:201-15

91.

15.

132-5.

205.

The aim of this chapter is to describe how rheumatoid arthritis (RA) can affect sexual health and intimate relationships negatively and to explore some possible ways to improve sexual health for persons with RA. To introduce the subject the chapter will begin with a short introduction to the term sexual health and how chronic illness can affect sexual health. Thereafter follows a description of how RA affects sexual health and intimate relationships, current research in this field by the authors, suggestions on how to improve sexual health and intimate relationships for persons with RA, and finally new research in the area and conclusions.

#### **2. Background**

According to World Health Organization (WHO) (World Health Organization 2006) sexual health is a state of physical, emotional, mental and social well-being in relation to sexuality. Sexual health incorporates a positive and respectful approach to sexuality and sexual relationships, and includes the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. To have a good sexual health is not only absence of sexual diseases, but is connected to self-esteem, intimate relationships and general quality of life. Sexuality has a multidimensional nature consisting of biologic, affective, cognitive and motivational parts. During the lifespan, sexuality is an integrated part of life. A good sexual health is to many people an important factor in order to achieve a desired quality of life, but the essence of what is good sexual health differs between individuals. A description of what a good sexual health is can also differ during the lifespan for the same person due to life circumstances. According to a recent study one of the two main predictors of global life satisfaction is satisfaction with sexual life (Tasiemski, Angiaszwili-Biedna, and Wilski 2009). A person´s sexual health affects their intimate relationship. A poor sexual health can also affect the person's view of the possibilities of finding a partner to share an intimate relationship with.

Chronic illness affects the patient physically, psychologically, socially and in their relationship with their partner.. The impact of a chronic disease on sexual health can be due to indirect factors influencing sexual function such as altering self-image, fatigue, pain and dependency (Basson and Schultz 2007). Sexual health is one of the domains that can be

Sexual Health and Intimate Relationships in Rheumatoid Arthritis 217

professionals (Abdel-Nasser and Ali 2006; Akkas 2010; Josefsson and Gard 2010; Hill, Bird, and Thorpe 2003; Rkain et al. 2006). Possible reasons for this will be discussed further in this chapter. Persons with RA can also be unaware of the fact that their reduced sexual health can be due to RA and therefore patient information about sexual health and RA is important. Ways of informing patients are by using material that often is available from organizations for persons with RA, both on-line and/or by leaflets. There are also on-line help-lines for persons with RA, where questions about sexual health have been presented (Richter et al. 2011). It is possible that further use of such information including sexual health might assist the communication concerning sexual health between partners and

Sexual health difficulties due to RA can include decreased sexual arousal, decreased sexual desire and decreased satisfaction (Abdel-Nasser and Ali 2006; Karlsson, Berglin, and Wallberg-Jonsson 2006). The reasons for reduced sexual health often include both psychological and physical components. These factors can be experienced in combination or separately and they might change during the course of the disease. Psychological responses to chronic illness can include feelings of loss of independence, disrupted self-image, depression and anxiety (Basson and Schultz 2007). The physical components can include pain, fatigue, reduced functional ability, reduced strength and mobility (Hill, Bird, and Thorpe 2003). Both the psychological and the physical factors interrupt and affect sexual health in several ways. Problems before sexual activities can be due to decreased sexual arousal and/or negative body image (Gutweniger et al. 1999). Decreased sexual desire is reported for 50-60% of patients with RA (Abdel-Nasser and Ali 2006). Sexual health difficulties during sexual activities can be pain and/or decreased mobility. After sexual activities, persons with RA can experience sexual health problems such as decreased satisfaction and increased pain. There can also be an altering of the sexual activities such as wanting to reach orgasm quickly, because prolonged sexual activity increases both pain and

Intimate relationships can be affected negatively by RA and there has been some studies concerning the situation of the partner of a person with RA according to the persons with RA (Rkain et al. 2006; Matheson, Harcourt, and Hewlett 2010; Bermas et al. 2000). Factors that can influence the intimate relationship of a person living with a chronic illness are: if the partner reacts negatively to illness; fear of rejection from the partner; lack of information about sexual rehabilitation; and if there is a cultural belief that persons with illness should not be engaged in sexual activities (Basson and Schultz 2007; Clayton and Ramamurthy 2008). There is also research showing that RA has a negative impact on the sexual relationship according to spouses of individuals with RA (van Lankveld et al. 2004; Lapsley et al. 2002). Reasons for this can be psychological distress and the need for social support

There is some research concerning how various medical treatments affect sexual health, but it is far from complete. Therefore there is limited information concerning the effect of common medication for RA on sexual health. Corticostereoids are often used for persons with RA and they can cause weight gain and "moon face" (i.e. edematous appearance of the face), which can be perceived as ugly and unpleasant by the person taking the medication (Clayton and Ramamurthy 2008). Feelings of being unattractive affect sexual health

perhaps also between persons with RA and health professionals.

fatigue (Elst et al. 1984).

within the relationship.

**3. How does RA affect sexual health and intimate relationships?** 

affected by chronic illness, such as RA. Effects of chronic conditions on sexual health is often under diagnosed (Bitzer et al. 2007), which can prolong or worsen the difficulties. Sexual health is included in the International Classification of Functioning, Disability and Health (ICF) (*International Classification of Functioning, Disability and Health.* 2001) within two separate areas, sexual functions (body functions) and intimate relationships (activity and participation). The ICF core sets for rheumatoid arthritis (Stucki et al. 2004) acknowledge both areas as important since they can be affected by the disease. However, since sexual health is a complex and broad field there are other components of the ICF, such as pain, sleep, physical functions, psychological functions etc., that are of importance when exploring sexual health. The importance of sexual health is at the same level for persons with a chronic disease as for healthy persons (Kedde et al. 2010) Therefore sexual health must be acknowledged by health care professionals. This is especially important since people with decreased sexual pleasure due to physical impairment can experience a decreased overall wellbeing which can be very distressing (Hull 2008).

The prevalence of RA is approximately 0.5-1% and the disease affects the life of the persons with RA in many different areas during life. There is a gender division for RA, with more women than men getting the disease (Englund et al. 2010). RA is characterised by joint swelling, joint tenderness and destruction of synovial joints (Aletaha et al. 2010). It is a chronic inflammatory disease and common symptoms are pain, fatigue, limited function, and decrease in physical capacity. The criteria for RA were revised in 2010 in order to increase focus on earlier stages of the disease (Aletaha et al. 2010). The most important treatment outcomes for persons with RA are reduction of pain, disability, fatigue and improved general wellness (Carr et al. 2003). All of these outcomes are connected to sexual health. The commonality of sexual health problems for persons with RA makes it assumable that sexual health is addressed routinely by health professionals within rheumatology and in patient reported outcome measurements. However, neither standard patient reported outcome measurements nor communication about sexual health is common within the field of rheumatology. Commonly used patient reported outcome measurements for RA such as Stanford Health Assessment Questionnaire (HAQ) (Fries et al. 1980) and Arthritis Impact Measurement Scales 2 (AIMS2) (Meenan et al. 1992) do not include questions about sexual health and intimate relationships. In the revised version of the HAQ, the Multi-Dimensional Health Assessment Questionnaire (MD-HAQ) one simple question about effect on sexuality by the disease is included (Pincus, Sokka, and Kautiainen 2005). If the MD-HAQ was used more often it might enhance the communication about sexual health in the clinical situation. Unfortunately MD-HAQ is only available in a few languages which limits the use of the instrument both in research and clinical work.

Generic outcome measurements are often used for patients with RA, such as Short Form 36 (SF 36) (Ware and Sherbourne 1992) and the EQ5D (EuroQol--a new facility for the measurement of health-related quality of life. The EuroQol Group 1990). These instruments are also lacking questions concerning sexual health. The lack of inclusion of sexual health and intimate relationships in the patient reported outcome measurements is a principal reason why the subject rarely is brought up in clinical meetings between persons with RA and health professionals. By using patient report outcome measures that include sexual health for patients with RA the communication about sexual health between health professionals and patients might be easier to start and perhaps increase.

Earlier research concerning communication about sexual health issues with persons with RA, indicates that this rarely appears in the meeting between the person with RA and health

affected by chronic illness, such as RA. Effects of chronic conditions on sexual health is often under diagnosed (Bitzer et al. 2007), which can prolong or worsen the difficulties. Sexual health is included in the International Classification of Functioning, Disability and Health (ICF) (*International Classification of Functioning, Disability and Health.* 2001) within two separate areas, sexual functions (body functions) and intimate relationships (activity and participation). The ICF core sets for rheumatoid arthritis (Stucki et al. 2004) acknowledge both areas as important since they can be affected by the disease. However, since sexual health is a complex and broad field there are other components of the ICF, such as pain, sleep, physical functions, psychological functions etc., that are of importance when exploring sexual health. The importance of sexual health is at the same level for persons with a chronic disease as for healthy persons (Kedde et al. 2010) Therefore sexual health must be acknowledged by health care professionals. This is especially important since people with decreased sexual pleasure due to physical impairment can experience a

The prevalence of RA is approximately 0.5-1% and the disease affects the life of the persons with RA in many different areas during life. There is a gender division for RA, with more women than men getting the disease (Englund et al. 2010). RA is characterised by joint swelling, joint tenderness and destruction of synovial joints (Aletaha et al. 2010). It is a chronic inflammatory disease and common symptoms are pain, fatigue, limited function, and decrease in physical capacity. The criteria for RA were revised in 2010 in order to increase focus on earlier stages of the disease (Aletaha et al. 2010). The most important treatment outcomes for persons with RA are reduction of pain, disability, fatigue and improved general wellness (Carr et al. 2003). All of these outcomes are connected to sexual health. The commonality of sexual health problems for persons with RA makes it assumable that sexual health is addressed routinely by health professionals within rheumatology and in patient reported outcome measurements. However, neither standard patient reported outcome measurements nor communication about sexual health is common within the field of rheumatology. Commonly used patient reported outcome measurements for RA such as Stanford Health Assessment Questionnaire (HAQ) (Fries et al. 1980) and Arthritis Impact Measurement Scales 2 (AIMS2) (Meenan et al. 1992) do not include questions about sexual health and intimate relationships. In the revised version of the HAQ, the Multi-Dimensional Health Assessment Questionnaire (MD-HAQ) one simple question about effect on sexuality by the disease is included (Pincus, Sokka, and Kautiainen 2005). If the MD-HAQ was used more often it might enhance the communication about sexual health in the clinical situation. Unfortunately MD-HAQ is only available in a few languages which limits the use of the

Generic outcome measurements are often used for patients with RA, such as Short Form 36 (SF 36) (Ware and Sherbourne 1992) and the EQ5D (EuroQol--a new facility for the measurement of health-related quality of life. The EuroQol Group 1990). These instruments are also lacking questions concerning sexual health. The lack of inclusion of sexual health and intimate relationships in the patient reported outcome measurements is a principal reason why the subject rarely is brought up in clinical meetings between persons with RA and health professionals. By using patient report outcome measures that include sexual health for patients with RA the communication about sexual health between health

Earlier research concerning communication about sexual health issues with persons with RA, indicates that this rarely appears in the meeting between the person with RA and health

professionals and patients might be easier to start and perhaps increase.

decreased overall wellbeing which can be very distressing (Hull 2008).

instrument both in research and clinical work.

professionals (Abdel-Nasser and Ali 2006; Akkas 2010; Josefsson and Gard 2010; Hill, Bird, and Thorpe 2003; Rkain et al. 2006). Possible reasons for this will be discussed further in this chapter. Persons with RA can also be unaware of the fact that their reduced sexual health can be due to RA and therefore patient information about sexual health and RA is important. Ways of informing patients are by using material that often is available from organizations for persons with RA, both on-line and/or by leaflets. There are also on-line help-lines for persons with RA, where questions about sexual health have been presented (Richter et al. 2011). It is possible that further use of such information including sexual health might assist the communication concerning sexual health between partners and perhaps also between persons with RA and health professionals.
