Background: Systemic lupus erythematosus (SLE) is an autoimmune rheumatic disease that can affect almost any organ or tissue in the body [1]. Both the disease itself, and treatment with drugs can cause profound effects on patients’ lifestyles [2]. As 90% of patients with SLE are women, published information predominantly reflects a female perspective on the effect of the disease [3]. We investigated the impact of SLE on male patients, using a qualitative approach.
Objectives: To identify themes in the lived experience of male patients with SLE, particularly those which might be specific to men.
Methods: 35 male patients with SLE were identified (from a total clinic population of approximately 350 patients). Patients received a postal invitation to take part and the first six consenting respondents were recruited. Each subject took part in a semi-structured interview with a Clinical Nurse Specialist who had been trained in qualitative techniques. Interviews were recorded and transcribed verbatim. The transcripts were analysed using a phenomenological approach incorporating Colaizzi’s steps for data analysis [4].
Results: Six patients were interviewed. The age range was 41 to 69 years and all were Caucasian. Although it was clear that each person’s experience of living with lupus was different, a number of common themes were generated. Over time, lupus moved from being a primary life focus, to being part of the backdrop of the lives of men with lupus. Despite the symptoms of lupus and the potential side effects of treatment; and the need to recreate a life post lupus, the male lupus patients in this study adapted and maintained a good quality of life overall. Some men expressed feelings of low self-esteem and difficulty in adjusting to an altered role in life caused by reduced ability to work after becoming ill. Others identified difficulty associated with having an illness commonly considered a “woman’s disease”.
Table:

Fig 1. Abstracts from interview transcripts
Themes	Examples
1. Reaction to diagnosis	‘I remember it very clearly..I felt … that
2. Work / financial impact	‘I felt that lupus was holding me back’.. H
3. Family Impact	‘I do the roles that would normally be done
4. Physical / psychological impact	‘ Lupus.. in many cases are likened to powe
5. Social impact	‘I don’t have as many friends as I used to
6. Adapting to change	‘I wouldn’t walk a long way with shopping.
7. The future	‘My assumption is that it [lupus] can be ma

Conclusion: Some of the themes identified as important by the men in this study are not routinely addressed by those providing clinical services to patients with SLE. It may also be difficult for male patients to raise such issues in patient groups where most members are women. Providing time and space to address these concerns may improve the clinical experience of male patients with SLE.
References: 1. Ehrenstein M and Isenberg D (2004) Systemic Lupus Erythematosus in adults. Oxford textbook of rheumatology. 2nd ed. Oxford University Press, Oxford
2. Hatchett L, Friend R, Symister P and Wadhwa N (1997) Interpersonal Expectations, Social Support, and Adjustment to Chronic Illness. Journal of Personality & Social Psychology September 73(3):560-73
3. Lahita RG (1994) What is lupus? Lupus Foundation of America Inc, Rockville MD.
4. Colaizzi PF (1978) Psychological research as the phenomenologist views it. In Valle R, King M (Eds) Existential phenomenological alternatives for psychology. Oxford press, New York.