Summary of the LUPUS UK Member Survey Findings

Summary of the LUPUS UK Member Survey Findings

During summer 2014 a questionnaire was posted to all 5660 members of LUPUS UK asking them to provide information about how lupus impacts on their lives. The response to the survey was fantastic with almost 50% (2527 questionnaires) completed. The results were analysed by The Arthritis Research UK Centre for Epidemiology, University of Manchester and accepted for publication in the journal ‘Lupus’ on 16 November 2017.



  • It is taking, on average, 6.4 years to diagnose lupus from the first symptom(s) experienced. (This has not improved over recent decades.)
  • Almost a half (46.9%) of individuals are initially misdiagnosed.
  • Fatigue and joint pain/swelling were reported as the most difficult symptoms to live with.
  • Almost a third (32%) reported using alternative or complementary therapies, with acupuncture and massage being the most common.
  • Almost one-half of those retired had done so on medical grounds.



Lupus affects approximately nine times as many women as men.

  • 94% of respondents were female and 6% male.

Lupus appears in people of all races, but is more prevalent in people from black and Asian heritage.

  • 93% of respondents classified themselves as white British. 2.7% and 1.8% of respondents classified themselves as African and Indo-Asian origin respectively.

Living Status

  • 79% of respondents live with their family or partner (85% of men and 76% of women).
  • 20% of women reported that they live alone compared to 14% of men.


  • The mean age of survey respondents was 57.1 years.




Details of diagnosis

  • 88% of respondents were diagnosed with systemic lupus erythematosus (SLE)[i]

Timing of diagnosis

  • The mean number of years between experiencing first symptom(s) and receiving a diagnosis is 6.4 years.
    • Men are diagnosed sooner (4.8 years)
    • Black patients are diagnosed sooner (2.8 years)

The delay in diagnosis from the onset of first symptoms is a significant period of time for many people. Whilst some individuals may be mildly affected, others can experience severe relapses of life-threatening disease.

Early recognition of SLE can lead to better treatment and preventative care, thereby avoiding the more severe and long-standing outcomes such as renal impairment, cardiovascular disease, and infections.

Of interest, the time to diagnosis was reported as much shorter by black patients. This may reflect the higher incidence and better awareness amongst healthcare professionals of the possibility of SLE in black individuals and also since the initial presentation in this population may be more severe, a more prompt diagnosis is also more likely.

  • The delay in diagnosis has stayed the same over a number of decades.

This finding suggests that further work is needed to raise awareness of lupus and related conditions both amongst health care professionals in the UK and amongst patients to recognise the early symptoms and signs of the disease.

  • 46.9% of respondents were initially incorrectly diagnosed with another condition.
    • Approximately 30 different illnesses were cited with rheumatoid arthritis being most commonly reported.



  • Respondents are commonly affected by many symptoms.
  • Over half (54%) reported frequently experiencing from between 6 and 10 different symptoms.
  • The most commonly reported symptoms were; Fatigue and weakness (91%), Joint pain/swelling (77.4%), Poor circulation/Raynaud’s (61%).

  • When patients ranked which three symptoms were most difficult to live with, fatigue (81%), joint pain/swelling (60%) and back pain (18%) were most commonly listed.

Almost a third of patients reported using alternative or complementary therapies suggesting that many of the symptoms are not fully addressed by usual treatments. For many patients conventional therapy is falling short and may even be contributing to residual symptoms due to of side-effects. This highlights that further research is needed to focus on potential causes of these symptoms and also to develop newer, more effective therapies. In addition, more consultation time per patient may be needed to monitor and address potential exacerbating factors of these symptoms.


Lupus has had a major impact on respondents’ lives.

Work status

  • 15% are working full-time.
  • 19% are in part-time employment.
  • Almost a quarter of all respondents have had to retire on medical grounds.
  • Over half (51%) of respondents receive benefits.

These results highlight that SLE symptoms impact directly on an individual’s ability to maintain employment. At an individual level, many patients also require day-to-day support not only from healthcare professionals but also from a partner, family member and friends. A holistic approach is therefore required which encompasses regular support from health care professionals, psychological support such as counselling, exercise, diet and evidence-based complimentary therapies.



[i] Some patients will be diagnosed with more than one type of lupus.


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