This report was written by Dr Sarah Ryan PhD, Rheumatology Nurse Consultant.
Introduction
Living with RA has been described as a 'tightrope between freedom and a life sentence' (Maycock, 1988). The course of the disease and the efficacy of the treatment programme are hard to predict. The real impact of illness is the restraint it places on everyday life and the affect it has on physical, psychological and social function. A half to two thirds of patients report lost social relationships, disrupted leisure activities and limitations in employment (Yelin et al, 1987).
1. Reactions to the diagnosis
Many patients experience a range of emotions including shock, retreat, denial or disbelief, grief, mourning or depression, anger and bewilderment, comparable to the stages of bereavement. Even after two years many patients have not realised that they have a chronic disease and remain in a state of denial (Eberhardt et al, 1993). Le Gallez (1993) found that it could take patients as long as 5 years for to adapt to their condition.
2. Sexuality and arthritis
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The W.H.O (1975) defines sexual health as: the integration of the somatic, emotional, intellectual and social aspects of sexual being in ways that are positively enriching. This includes freedom from fear, shame, guilt, false beliefs and other psychological factors that inhibit sexual responses and impair sexual relationships
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Blake et al (1987) in a randomised controlled trial (RCT) found that physical unattractiveness, loss of partner interest and concerns regarding sexual drive were as common amongst people without arthritis as in those with arthritis. The main difference between the two groups was a greater loss of sexual satisfaction over time, with joint symptoms and fatigue cited as major influences on sexual satisfaction.
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Kraaimat et al (1996) reported physical disability, pain and to a lesser extent, depression was found to contribute to the intrusiveness of RA on sexuality
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Fifty six percent of patients with RA found that fatigue and pain placed limitations on sexual intercourse (Hill et al, 2002).
Both Blake and Hill identified that patients would welcome the opportunity to discuss sexual health with either the doctor or nurse.
3. Depression
People with RA are twice as likely to suffer from depression compared to the general population (Dickens and Creed, 2001). Major depression is a syndrome of sufficient intensity to impair psychological, social and vocational functioning (Parker and Wright, 1995).
Factors associated with depression
- Pain
- Functional disability-patients perform fewer valued activities (Katz, 1995).
The causal relationship of these two factors is not known. It is difficult to state whether depression cause pain and functional problems or whether having pain and limitations in function contributes to an individual feeling depressed.
- Social factors e.g. lack of social support.
- Concerns regarding future disability.
Recognising depression
Depressionis often considered to be a consequence of living with a chronic condition such as RA and consequently often go untreated. One of the most widely used tools is the Hospital Anxiety and Depression Index (Zigmond and Snaith, 1983). It contains fourteen items and obtains patient's responses to their perceptions of wellbeing. It has been shown to be valid and reliable for most medical conditions including RA (Zigmond and Snaith, 1983). Dickens and Creed (2001) recommend that follow up questioning is required to determine whether an intervention is necessary.
Treating depression
A combination of approaches may be required, determined by an individual assessment. These can include:
- Individual supportand counselling
- Cognitive behaviourtherapy
- Medication. Tricyclics and Specific Serotonin Reuptake Inhibitors have equal efficacy in the treatment of RA (Anderson et al, 2001) Tricyclics have a better analgesic effect but should be avoided in patients with a cardio-vascular history
- Referral to a psychiatrist or psychologist
- Referral to a voluntary agency e.g. MIND for relaxation therapy
4. Social Support
Social support is regarded as a necessary component to promote physical, psychological, social and emotional wellbeing.
Patients with RA who had a greater number of close friends and relationships reported fewer activity losses and made activity modifications (Katz, 1995). Being able to turn to others for support may mitigate the effects of pain and functional impairment and alleviate the psychological distress associated with them.
Patients with arthritis who receive support from their family and friends exhibit greater self esteem (Fitzpatrick et al, 1988), psychological adjustment (Affleck et al, 1988) life satisfaction (Burckhardt 1985) and report less depression (Revenson and Majerovitz, 1991).
The family both influences and is influenced by the rheumatic disease of one of its members (Revenson, 1993). Radojevic et al (1992) demonstrated the importance of the family role in the management of symptoms in patients with RA, an intervention incorporating family support was more effective in reducing pain.
Manne and Zautra (1989) demonstrated that married women with RA perceived better access to help with instrumental tasks, experienced more affection and felt more needed than unmarried women. Although marriage can confer health protection, negative aspects of the marital relationship can affect coping and adjustment. Increased criticism from the spouse is directly related to maladaptive coping behaviour and indirectly to poor psychological adjustment (Manne and Zautra 1989).
5. Work
It is estimated that 40 out of a 100 people with RA stop working within 5 years of being diagnosed with the condition (NICE guidelines, 2002).
This can lead to:-
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Coping with an enforced change of role for the individual which often has psychological and social consequences e.g. depression and isolation
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Family members may have to leave work to provide care or take on work to compensate for lost income
The impact of rheumatoid arthritis can affect physical, psychological, social and sexual function. There are many interventions that can minimise the impact of the condition on everyday activities. Having access to rheumatology specialists e.g. doctors, nurses, physiotherapists and occupational therapists will ensure support, education and appropriate treatment options are provided.
References
Affleck G et al (1988) Social support and psycholoical adjustment in rheumatoid arthritis. Arthritis Care and Research ; 1: 71-77
AndersonI M et al 2001 Evidence based guidelines for treating depression disorders with anti-depressants: a revision of the 1993 British Association for Psychopharmacology guidelines. J Psychopharmacology 2001; 14 : 2-30
Blake DJ et al (1987) Sexual quality of life of patients with arthritis compared toarthritis free controls. Journal of Rheumatology ; 14 (3) ;570-576
Burckhardt CS (1985) The impact of arthritis on quality of life. Nursing research; 34:11-16
Dickens and Creed (2001) The burden of depression in patients with RA. Rheumatology;40:1327-1330
Eberhardt K et al (1993) Psychological reactions in patients with early RA. Patienteducation and counselling; 20: 93-100
Fitzpatrick R et al (1988) Social relationships and psychological wellbeing in RA. SocialScience and Medicine; 27: 399-403
Hill J et al (2002) The effects of rheumatoid arthritis on sexual relationships. Rheumatology ; 41, absract supplement 1 no 203, p 83
Katz P (1995) The development of depressive symptoms amongst women with rheumatoid arthritis, with and without symptoms, the role of function. Arthritis and Rheumatism ; 3 (8): 49-56
Kraaimaat F.W et al (1996) Intrusiveness of Rheumatoid Arthritis on Sexuality in Male and Female Patients Living with a Spouse. Arthritis Care and Research ; 9 (2):120-125
Le Gallez P (1993) Rheumatoid arthritis: effects on the family. Nursing Standard ;17 (39): 30-34
Mann eSL, Zautra AJ (1989) Spouse criticism and support. Journal of Personal Social Psychology; 56: 608-617
Maycock J (1988) The Image of rheumatic Disease. In Salter M (ed) Altered Bodyimage :The Nurses Role. J Wiley, New York
NICE(2002) Guidelines on the use of etanercept and infliximab fro the treatment of RA. Technology appraisal guideline no 36. NICE March 2002
Parker JC, Wright GE (1995) The implication of depression for pain and disability in rheumatoid arthritis. Arthritis Care and Research ; 8 (4):279-281
Radojevic V et al (1992) Behavioural interventions with and without family support for rheumatoid arthritis. Behavioural Therapy ; 23: 13-30
Revenson TA (1993) The role of social support with rheumatic disease. In: Newman S,Shipley M (eds) psychological aspects of rheumatic disease. Baillere's clinical rheumatology ; 7 (2): 377-396
Revenson TA, Majerovitz SD (1991) The effects of chronic illness on the spouse: social resources as stress buffers. Arthritis Care Research ; 4: 63-72
World Health Organisation (1975) cited in Woods, NF (1987) Towards a holistic perspective of human sexuality; Alterations in sexual health and nursing diagnosis. Holistic Nursing Practice; 1 (4) : 1-11
Yelin E et al (1987) Work dynamics of the person with rheumatoid arthritis. Arthritis and Rheumatism ; 30: 507-512
Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Psychaitry Scandinavian ; 67: 361-370
Useful Addresses
Arthritis Care
18 Stephenson Way
London
NW1 2HD
Arthritis Research Campaign
Copeman House
St Mary's Court
St Mary's Gate
Chesterfield
S41 7TD
Reviewer's Comments
The impact of rheumatoid arthritis is not confined to physical symptoms or functional ability but extends to almost every area of life. This review highlights the wide-ranging impact of RA, summarising an enormous literature in a few concise paragraphs. In addition to providing background information about the psychological and social impact of RA, it provides useful clinical hints on assessment and management. It is an informative review that should help every clinician to have better understanding of the experience of their patients.
(Oct 2003 Dr Alison Carr)
