This document summarizes the results of a survey conducted by LUPUS UK to understand patient experiences and quality of life impacts of systemic lupus erythematosus (SLE). The survey collected demographic information, diagnosis details, symptoms experienced, health status, and treatment details from over 2,500 SLE patients. Key findings include: 1) The average time from initial symptoms to SLE diagnosis was over 6 years, and nearly half of respondents were initially misdiagnosed. 2) Common symptoms included pain, fatigue, and cognitive issues. 3) Patients reported high usage of glucocorticoids, anti-malarials, and immunosuppressants but many symptoms were not fully addressed by treatments. The study highlights the

1. 家醫科R1 盧敬文
指導老師：王宏斌主治醫師
2018.9.26

2. Introduction
• SLE is more prevalent in people of African ancestry as well as Indo-
Asians and individuals from the Far East such as China.
• Diagnosing SLE can be difficult due to the complex and unpredictable
disease course

3. • Quality of life and the individual personal burden of SLE are equally
important to allow us to better understand the illness from the
patient’s perspective.
• Further insight is needed into the personal burden of SLE in
everyday living and to identify areas of unmet need from the patient’s
perspective.
• LUPUS UK

4. Methods:
survey population and data collection
• Questionnaire:
• month and year of birth, gender, ethnicity, living status and where
applicable, details of work status and benefit support
• details of their consultant diagnosis(es) including month and year and
details of other diagnoses they may have previously been given
• symptoms that regularly affect them
• Information on general health:
• mobility, self-care, anxiety/depression, pain and fatigue and level of
disruption to undertake usual activities
• The level of support

5. Methods:
Statistical methods
• descriptive statistics

6. Results:
Demographic characteristics
• 44.6%(n =2527) completed and returned.
• 93.8%(n =2371) were female and 6.2% (n =156) were male
• mean (SD) age at survey date of 56.9(13.6) years and 60.9 (15.7) years
• White British(93%, n =2350) with 2.7%(n =68) of African and 1.8%
(n =46) of Indo-Asian
• 78.9%(n =1994) lived with their partner or family and 19.4% (n =489)
lived alone

8. Diagnosis characteristics
• Black patients(2.8(3.6)years)
• indicating no temporal trend towards earlier time to diagnosis in
recent decades

9. • One-half of respondents had been given a different diagnosis prior to
their final diagnosis (46.9%,n =1186).

10. • The commonest co-morbidities reported:
• thyroid disease (12.9%, n =326),
• overlapping RA(11.2%, n =283),
• osteoporosis (9.0%, n =227),
• osteoarthritis (10.1%, n =256)
• cardiac conditions (11.5%, n =291)

11. Symptoms
experienced

13. Health care and support

14. Treatment
• Patients self-reported high levels of
therapy use with the commonest
being
• glucocorticoids (67%,n =1694)
• anti-malarials (67.9%, n =1715)
• immunosuppressants (45.1%, n =1140)

15. Discussion
• significant period of time (6.4 years) between initial symptoms and
reaching the diagnosis of SLE.
• Almost one-half (46.9%) of the individuals who responded had also
been given a different initial diagnosis prior to their final diagnosis.
• the time to diagnosis was much shorter in Black patients(2.8 years).
• a trend towards a shorter time to diagnosis in men(4.8 years).
• A recent UK study showed that in the five years prior to diagnosis there is a
higher consultation rate amongst patients who are eventually diagnosed as
SLE.

16. • many of the symptoms are not fully addressed by usual treatments.
• From a patient perspective, commonly used treatments in SLE are
falling short of managing the disease and some may even be
contributing to residual symptoms.
• 32% of patients reporting use of alternative therapies
 more consultation time per patient
 Further research
• e.g. omega-3 fish oils, vitamin D

17. • SLE symptoms impact directly on an individual’s ability to maintain
employment, contributing to a high societal burden
• A holistic approach is required
which encompasses regular support from health care professionals,
psychological support such as counselling, exercise, diet and evidence-
based alternative therapies.
• careful monitoring both of clinical and patient-reported outcomes
is key to better supporting individuals with SLE

18. limitation
• self-reported patient recall is not formally valid for diagnosis
• individuals who participated were more likely to be motivated
individuals than individuals declining
• Individuals were members of a patient support group, already a
motivated cohort potentially better informed about their disease.
• The ethnic mix of the sample was not fully representative of the UK
SLE population.

21. • 受苦也是社會的。病人不是個人的悲劇，而是病人和家屬之間，
互為主體的「受苦」過程，是「關係式」的受苦。
• Kleinman, Arthur. 1999. “Experience and Its Moral Mode: Culture, Human Conditions, and
Disorder.” Pp. 357-420 in The Tanner Lectures on Human Values, edited by G. Peterson. Salt
Lake City: University of Utah Press.
• 「積極病患」不只是遵從醫囑，而是積極主動的過自己的生活，
著重日常的嘗試，二元對立並不會改善病患的生活。流行病學關
注用大數字測量的變數相關性，但我們要透過訪談和個案報告，
才能了解那些無法被測量的非預期的經驗。
• Annmarie Mol. 2008. The Logic of Care: Health and Problem of Patient Choice. London:
Routledge.

22. Back to our case…