Experiences and Perspectives of Adults Living With Systemic Lupus Erythematosus: Thematic Synthesis of Qualitative Studies

Abstract

Objective

Systemic lupus erythematosus (SLE) is a chronic inflammatory autoimmune disease that significantly impairs patients' quality of life and can be life threatening. This study aimed to describe the experiences and perspectives of adults living with SLE.

Methods

We conducted a systematic review and thematic synthesis of qualitative studies that explored the experiences of adults living with SLE. We searched MEDLINE, Embase, PsycINFO, CINAHL (to November week 1, 2012), Google Scholar, a thesis database, and reference lists of relevant articles.

Results

Forty-six studies involving 1,385 participants were included. Five themes were identified: restricted lifestyle (including subthemes of pervasive pain, debilitating fatigue, mental deterioration, disruptive episodic symptoms, and postponing parenthood), disrupted identity (gaining diagnostic closure, prognostic uncertainty, being a burden, hopelessness, heightened self-consciousness, fearing rejection, and guilt and punishment), societal stigma and indifference (illness trivialization, socially ostracized, and averse to differential treatment), gaining resilience (optimism, control and empowerment, being informed and involved, and valuing mutual understanding), and treatment adherence (preserving health, rapport with clinicians, negotiating medication regimens, and financial burden).

Conclusion

SLE has a severe and pervasive impact on patients' self-esteem and independence. Their physical and social functioning is limited and they feel anxious about their future. Patients perceive that SLE is trivialized, misunderstood, and stigmatized by their family, friends, and physicians, which intensifies their sense of isolation. Educational, psychosocial, and self-care interventions are needed to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation, and thereby to achieve better treatment and health outcomes in patients with SLE.

INTRODUCTION

Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with a relapsing and remitting course that can be life threatening. The disease has a peak incidence in females ages 15–40 years, and the prevalence of SLE is higher in nonwhite populations (1-4). Although treatment advances have reduced mortality rates in SLE, patients still experience impaired quality of life (QOL) and long-term morbidity (3, 5-7).

The debilitating pain, musculoskeletal manifestations, fatigue, and renal and cutaneous problems can limit patients' ability to work and participate in family and social activities (8-10). The psychological and cognitive impact of SLE can have an adverse effect on physical functioning and disease activity (10-12). Depression may be associated with greater physical disability, and low self-esteem has been found to be associated with greater cumulative organ damage (13). Moreover, studies have identified discordances between patients and clinicians in their perceptions of disease burden and activity, and consequently this can lead to poor treatment adherence, dissatisfaction with care, and adverse QOL and health outcomes (7, 14-16).

Studies examining the burden of disease in patients with SLE have tended to focus on physician-measured disease activity and damage scores or QOL surveys (15-20). Qualitative research can provide a range and depth of understanding about the experiences and beliefs of SLE from the patient's perspective. A single qualitative study typically focuses on a target patient group or specific research topic. Thematic synthesis is used to formalize the identification and development of themes from multiple primary studies (21), and subsequently enables the development of a comprehensive conceptual framework that explains the experiences and perceptions of patients with SLE.

This study aimed to synthesize qualitative studies on the experiences and perspectives of adults living with SLE. Broader knowledge about patients' perspectives can inform strategies to deliver patient-centered care to improve health and treatment outcomes (22).

Box 1. Significance & Innovations

• Systemic lupus erythematosus (SLE) has a severe and pervasive impact on patients that can be described in 5 major themes identified in the synthesis: restricted lifestyle, disrupted identity, societal stigma and indifference, gaining resilience, and treatment adherence.
• Patients living with SLE need educational, psychosocial, and self-care interventions to promote mental resilience, positive coping strategies, self-advocacy, and capacities for social participation, which can lead to better treatment and health outcomes in patients with SLE.

MATERIALS AND METHODS

Selection criteria

Qualitative studies that explored the perspectives and experiences of adults (ages ≥18 years) diagnosed with SLE were included. We excluded articles that used structured surveys and reported only quantitative data. Observational epidemiologic studies, non–primary research articles (letters, commentaries, and reviews), conference abstracts, and studies that did not elicit data from adults with SLE were also excluded. Non-English articles were excluded due to lack of resources for translation.

Data sources and searches

The search strategy is provided in Supplementary Appendix A (available in the online version of this article at http://onlinelibrary.wiley.com/doi/10.1002/acr.22032/abstract). The searches were conducted in MEDLINE (1946 to November week 1, 2012), Embase (1980 to week 45, 2012), PsycINFO (1806 to November week 1, 2012), and CINAHL (1982 to November week 1, 2012). We also searched Google Scholar, reference lists of relevant studies and reviews, and a digital dissertation database (ProQuest). We screened the abstracts and discarded those that that did not meet the inclusion criteria, and then examined the full text of potentially relevant studies.

Comprehensiveness of reporting

We assessed the explicitness of reporting of each primary study, which can provide contextual details for readers to assess the transferability of the study findings to their setting (23). We used a framework that was developed for the reporting of qualitative studies that included the criteria specific to the research team, study methods, context of the study, analysis, and interpretations (23). Two reviewers (BS, JJ) independently assessed each study and disagreements were resolved by discussion.

Synthesis of findings

We used thematic synthesis to synthesize the findings (21). This technique involves the development of descriptive themes and also analytical themes that aim to go beyond the primary studies to generate new interpretive constructs, explanations, or hypotheses. We extracted all of the participant quotations and text under the Results and/or Discussion/Conclusion sections of each article. These were entered verbatim into HyperRESEARCH software, version 3.5.1 (ResearchWare), for qualitative data management. For each article, we performed line-by-line coding and recorded concepts that focused on the experiences and perspectives of patients with SLE, and identified common and divergent concepts. Subsequent articles were analyzed similarly, and we translated the concepts across studies by adding coded text to existing concepts or created a new concept when necessary. One author (BS) reread each article to ensure that all concepts were integrated. The preliminary coding framework was discussed among 4 authors (BS, DS-G, JCC, AT). We examined the concepts for similarities and differences, and grouped them into descriptive themes. To extend the findings offered by the primary studies, we used FreeMind 0.9.0.2 Beta 14 (Source Forge) to map the interrelationships between themes and to develop analytical themes.

RESULTS

Literature search and study descriptions

The search yielded 1,774 articles. Of these, 1,728 were excluded because they were ineligible (Figure 1). We included 46 studies involving more than 1,385 participants (more than 1,309 [95%] were women). Two studies did not report the number of participants and 5 studies did not specify the sex of the participants. The study characteristics are shown in Table 1. The studies were conducted across 15 countries. Data were collected using interviews (31 studies), focus groups (12 studies), observations (6 studies), drawings (1 study), and open-ended surveys (2 studies).

Figure 1

Search results. SLE = systemic lupus erythematosus; * = minimum 1,385 participants, 2 studies did not report the total number of participants.

Table 1. Characteristics of included studies*

Author, year (ref.)	Country	N	Age, years	Sex, M:F	Years since diagnosis	Data collection	Conceptual methodologic framework	Analysis	Principal participants' experiences explored
Archenholtz et al, 1999 (45)	Sweden	50	20–70	0:50	≥1	Open-ended telephone interview	–	Content analysis	Domains of importance and dissatisfaction
Backman et al, 2007 (46)	Canada	2	24–53	0:2	3–40	Face-to-face semistructured interview	Grounded theory	Grounded theory analysis	Impact of chronic, inflammatory arthritis on motherhood or parenting
Baker and Wiginton, 1997 (47)	US	38	18–75	0:38	0–29	Structured interview with open-ended questions	–	–	Illness experience
Beckerman, 2011 (48)	US	32	–	3:29	≤2, 2–5, ≥5	Focus group	–	Thematic analysis	Psychosocial experiences, challenges, and needs
Burckhardt et al, 1993 (49)	Sweden	50	20–70	0:50	≥1	Telephone interview, open-ended questionnaires	–	–	Quality of life and satisfaction
Carder et al, 2003 (50)	US	–	18–64	–	≥1	Face-to-face semistructured interview	Ethnography	Grounded theory analysis	Perception on long-term medication use
Chambers et al, 2008 (51)	Jamaica	17	<30, 31–50, >50	0:17	>1	Face-to-face semistructured interview	–	Inductive analysis	Medication adherence
Chambers et al, 2009 (52)	UK	31	19–70	3:28	2–41	Face-to-face interview	–	Framework analysis	Medication adherence
Chute, 1998 (53)	US	22	29–68	2:20	–	Face-to-face interview	Grounded theory	Grounded theory analysis	Illness experience
Costenbader et al, 2007 (54)	US	31	–	2:29	≥1	Focus group and telephone interview	–	Grounded theory analysis	Trials participation
Doward et al, 2009 (55)	UK	50	20–70	3:47	0.3–36	Face-to-face interview	–	–	Impact of SLE on quality of life
Gallop et al, 2012 (56)	US	22	20–60	1:21	–	Face-to-face semistructured interview	Cross-sectional, qualitative	Thematic analysis	Perspectives on symptoms and impact on quality of life
Garcia Popa-Lisseanu et al, 2005 (57)	US	22	18–80	2:20	≤15	Focus group	Ethnography	Grounded theory analysis	Medication adherence in ethnically diverse and economically disadvantaged patients
Goodman et al, 2005 (58)	Australia	36	–	4:32	–	Face-to-face semistructured interview	Phenomenology	Interpretative phenomenologic analysis	Illness representations
Grant, 2001 (59)	UK	1	26	0:1	>1	Face-to-face interview, occupational therapy, observation	Case study	Middle-order approach	Illness experience in relation to parenting and occupational therapy
Hale et al, 2006 (60)†	UK	10	26–68	0:10	1–12	Face-to-face semistructured interview	Phenomenology	Interpretative phenomenologic analysis	Concerns about appearance
Hale et al, 2006 (61)†	UK	10	26–68	0:10	1–12	Face-to-face semistructured interview	Phenomenology	Interpretative phenomenologic analysis	Health care provision
Hatfield-Timajchy, 2007 (62)	US	42	29–63	0:42	≥0	Open-ended interview, observation	Ethnography	Content analysis	Impacts of diagnosis delays, treatment options, and support group participation
Howe, 2010 (63)	US	10	33–48	0:10	≥2	Semistructured interview and observation	Grounded theory	Grounded theory analysis	Perceptions regarding influence of social support in African American women
Jolly et al, 2012 (64)	US	21	≥18	2:19	≥1	Face-to-face semistructured interview	–	Thematic analysis	Development and validation of body image tool
Karlen, 1997 (27)†	US	10	25–51	0:10	≥3	Face-to-face interview, observations	Ethnography	Thematic analysis	Sexual experience
Karlen, 2002 (65)†	US	10	25–51	0:10	≥3	Face-to-face interview	Ethnography	Thematic analysis	Sexual experience
Kumar et al, 2011 (66)	UK	14	44–55	–	≥0.5	Focus groups with open-ended questions	–	–	Beliefs about medicines in patients of Southeast Asian origin
Mancuso et al, 2011 (67)	US	50	≥18	4:46	–	Face-to-face interview with open-ended questions	Grounded theory	Grounded theory analysis	Perceptions and measurements of physical activity
Mattje and Turato, 2006 (68)	Brazil	5	–	1:4	–	Semistructured interview with open-ended questions	Case–control study	Content analysis	Life experiences
Mattson et al, 2012 (69)	Sweden	19	27–80	3:16	7–34	Focus group	–	Inductive content analysis	Illness experience
McElhone et al, 2010 (24)	UK	30	21–75	0:30	1–28	Semistructured interview	Phenomenology	Interpretative phenomenologic analysis	Impact of illness
Mendelson, 2003 (38)	–	90	–	–	–	Internet support group postings	–	Inductive analysis	Support group
Mendelson, 2006 (70)a	US	7	23–59	0:7	≥2	Audiotaped interview	Ethnography	Immersion and crystallization	Daily experience
Mendelson, 2009 (42)a	US, Australia, UK, Ireland	23	18–57	0:23	2–22	Patient stories via e-mail	Ethnography	Immersion and crystallization	Diagnosis experience
Miles, 2009 (39)	–	–	–	–	–	Textual and symbolic content from the internet	–	–	Meaning of chronic illness and identity transformations
Miljetaig and Graue, 2009 (71)	Norway	11	35–69	1:9:1 other	3–23	Focus group interview	–	Ad hoc meaning generation	Unmet needs
Nowicka-Sauer, 2007 (25)	Poland	38	–	0:38	–	Drawings	–	–	Illness perceptions and experiences
Ow et al, 2011 (72)	Singapore	29	23–62	2:27	>0	Focus group, semistructured interview with male participants	Grounded theory	Thematic analysis	Health-related quality of life domains important to multiethnic Asian SLE patients
Pettersson et al, 2010 (73)	Sweden	33	25–70	0:33	≥2	Focus group discussions	Descriptive	Content analysis	Experience of SLE-related fatigue
Pettersson et al, 2012 (74)	Sweden	324	18–84	30:294	0–58	Written answers to open-ended questions	Mixed approach	Inductive analysis	Illness experience
Porter, 2000 (30)	US	12	–	0:12	–	Face-to-face interview	Ethnography	Thematic analysis	Daily experiences
Robbins et al, 1993 (75)	US	12	18–62	–	–	Focus group interview, observation	Case study	–	Adapting the SLE Self-Help (SLESH) Course for Latino patients
Robinson et al, 2010 (76)	US	33	≥18	6:27	–	Focus group, face-to-face interview	Phenomenology, mixed approach	–	Impacts on health, family, and work
Schattner et al, 2008 (26)	Israel	15	–	0:15	–	Face-to-face interview	Phenomenology	Thematic analysis	Impact of SLE on personality
Stamm et al, 2007 (77)	Austria	21	26–66	1:20	2–30	Focus group	–	Meaning condensation	Concepts important to SLE patients
Taieb et al, 2010 (28)	France	33	15–65	0:33	0–26	Face-to-face semistructured interview	Kleinman's explanatory model	Interpretative phenomenologic analysis	Patients' beliefs about the causes of SLE
Waldron et al, 2011 (78)	UK	43	20–70	3:40	3–22	Focus groups	Grounded theory	Thematic inductive analysis	Information needs at early stage of diagnosis
Wiginton, 1999 (79)	US	20	27–60	0:20	≤2 or ≥5	Interview and concept maps	Self-Q technique	–	Perspectives on SLE
Wittmann et al, 2009 (80)	Switzerland	12	30–69	0:12	2–35	Semistructured interview	Explorative	Content analysis	Suffering and posttraumatic growth
Zeddies, 2002 (29)	US	14	31–55	0:14	1–17	Semistructured face-to-face and telephone interview, observation	Interpretive	Grounded theory analysis	Experiences and coping with chronic illnesses

• – =not stated, unclear, or unable to ascertain; content analysis = interprets the data based on either summative, directed, or conventional approaches; grounded theory = uses iterative data collection and analysis to develop theories about social phenomena; thematic analysis = develops concepts and theories inductively based on data; ethnography = understands and describes meanings and behavior of social and cultural groups; framework analysis = follows 5-step processes, including familiarization, thematic analysis, indexing, charting and mapping, and interpretation; SLE = systemic lupus erythematosus; phenomenology = focuses on exploring individuals' own perceptions, which provide accounts into the subjective experience of individuals; interpretative phenomenologic analysis = builds concepts based on in-depth patient experiences and understanding and associated literature; middle-order approach = allows movement in either direction from middle-order categories to subcategories and/or broader themes; immersion and crystallization = involves multiple readings and reflections on data; ad hoc meaning generation/meaning condensation = uses a variety of common sense approaches to generate meanings; Kleinman's explanatory model = encompasses anthropology, medicine, and psychiatry disciplines; Self-Q technique = derives cognitive maps of the participants.
• ^a The studies used the same samples. Mendelson (2006) (70) conducted 2 independent and distinct samples in her study.

Comprehensiveness of reporting

Comprehensiveness of reporting was variable, with studies reporting 5–23 of the 26 possible items included in the framework (Table 2). Of the 46 studies, 34 described the participant characteristics and 42 stated the participant selection strategy. Questions or a topic guide were provided in 43 studies. Eleven studies reported the use of software. Twenty-eight studies specified the use of researcher or expert triangulation in data analysis. Forty-two studies provided raw data, including quotations and drawings, and reported a range and depth of insight on the experiences and perspectives of patients living with SLE.

Table 2. Comprehensiveness of reporting in the included studies

Items	References	N
Personal characteristics
Interviewer/facilitator identified	24, 25, 27-30, 38, 42, 45-48, 50-54, 56-63, 65-67, 69-73, 76-80	38
Occupation	24, 25, 27-30, 38, 42, 45-48, 51-54, 58-63, 65-67, 70-73, 76-80	34
Sex	24, 25, 27-30, 38, 42, 45-48, 51-54, 56, 58-63, 65-67, 69-73, 76-80	36
Experience/training in qualitative research	27-30, 45, 54, 56, 63, 76	9
Relationship with participants
Relationship established prior to study commencement	58	1
Participant selection
Selection strategy (snowball, purposive, convenience)	24-30, 45-64, 66-80	42
Method of approach or recruitment	24-30, 42, 45-80	44
Sample size	24-30, 38, 42, 45-80	45
Number/reasons for nonparticipation	24, 27-30, 47, 48, 50-54, 57, 60, 61, 65-67, 69, 73	20
Setting
Venue for data collection	24-30, 45, 46, 49-54, 56-59, 62, 66-73, 78	29
Presence of nonparticipants	24, 28, 75, 78	4
Description of the sample	24-30, 42, 45-71, 73-80	43
Data collection
Questions, prompts, or topic guide	24-30, 42, 45-54, 56-80	43
Repeat interviews/observations	27, 29, 30, 38, 62, 65	6
Audio/visual recording	24, 27-30, 46-48, 50-66, 68-73, 76, 77, 80	34
Field notes	24, 27-29, 45, 46, 48, 50-54, 57-63, 67, 69, 71, 72	23
Duration	24-30, 38, 46, 47, 50-54, 56-66, 69-72, 76-80	35
Data/theoretical saturation	24, 27, 29, 46, 51, 52, 54-56, 64-66, 68, 75, 78	15
Data analysis
Number of data coders	24, 27-30, 39, 45, 46, 49-54, 56-59, 61-63, 66, 67, 69, 70, 72-74, 77-80	32
Derivation of themes or findings	24, 26-30, 38, 39, 45-54, 56-64, 66-80	42
Protocol for data preparation and transcription	24, 26-30, 38, 39, 45-48, 50-54, 56-64, 66-74, 76-80	40
Use of software	38, 47, 50, 53, 56, 57, 62, 63, 72, 79, 80	11
Participant feedback on findings	27, 29, 30, 46, 56, 59-61	8
Researcher/expert triangulation	24, 27-30, 45, 46, 50-52, 56-58, 60, 61, 63, 66, 67, 69-74, 76-78, 80	28
Reporting
Participant quotations or raw data provided	24-30, 39, 42, 45-48, 50-54, 56-74, 76-80	42
Range and depth of insight into participants' perspectives (thick description provided)	24-30, 39, 42, 45-48, 50-54, 56-74, 76-80	42

Synthesis

We identified 5 themes: 1) restricted lifestyle (including subthemes of pervasive pain, debilitating fatigue, mental deterioration, disruptive episodic symptoms, and postponing parenthood), 2) disrupted identity (gaining diagnostic closure, prognostic uncertainty, being a burden, hopelessness, heightened self-consciousness, fearing rejection, and guilt and punishment), 3) societal stigma and indifference (illness trivialization, socially ostracized, and averse to differential treatment), 4) gaining resilience (optimism, control and empowerment, being informed and involved, and valuing mutual understanding), and 5) treatment adherence (preserving health, rapport with clinicians, negotiating medication regimens, and financial burden). Selected quotations to demonstrate each theme are provided in Table 3. A thematic schema indicating conceptual links between themes is provided in Figure 2.

Table 3. Illustrative quotations reflecting each theme

	Participants' quotations and/or authors' explanations	Contributing references
Restricted lifestyle
Pervasive pain	“The pain… . I really was in tears … I was just so sick I just called in and didn't go to work. I was feeling like I was dying” (62)a “Lupus causes obstacles for me pain, fatigue and makes me not in the mood to walk or exercise” (67)a “Joint pain stops me walking very far. I used to go to the gym, I don't now. I used to swim quite a lot, I don't do that now. My knees sometimes give way. My leg gives way so I am a bit frightened of actually coming out of the changing rooms, you know on to the side of the pool and the results of that, of not doing those things have made me gain so much weight and I have put so much on I feel like it has hampered my joints and it is like a vicious circle that I don't know how to break” (24)a “I hurt all over, terrible … just constantly … hurting … and being very grumpy and depressed… . The arthritis is what was severe to the extent that I needed help dressing, getting out of bed … all that adds to the depression” (76)a	24, 25, 27-30, 53, 55, 56, 58, 62, 63, 65, 67, 70, 74, 76, 80
Debilitating fatigue	“I was a co-manager of a store and the fatigue was really bad that I had to step down to being assistant manager” (56)a “I think the hardest things about my disease have been debilitating fatigue and malaise that sends me to bed right after dinner and interferes with family life” (70)a “Once in a while I have a day where I can't get myself to do anything. Those days are terribly long for me. I feel so restless that I can't stand myself” (30)a	24, 27-30, 42, 46, 48, 49, 55-58, 62, 63, 67, 69, 70, 73, 74, 76
Mental deterioration	“I have days where I can't think straight at all, and I get confused easily. Also I will forget what I'm doing in the middle of doing it, or saying in the middle of saying it” (70)a “I was forgetting things and I couldn't concentrate. At work, we would be going to see patients and I felt like I was in worse shape than they were. Here I am trying to help them and I can't even help myself” (30)a “That was the reason that I retired. I got to the point that I couldn't remember the children's names. I would go to call a child and draw a complete blank, which was very frustrating. I was a teacher. I could not grasp things like normal. That last year reduced me to tears because I was unable to do an effective job. I then decided that it was time for me to hang it up” (30)a	24, 27, 30, 42, 69, 70, 76
Disruptive episodic symptoms	“Sometimes I can go months without worry, but when it hits, what troubles me is that I just don't know from day to day. Sometimes, I am feeling ok enough and then all of a sudden, the fever, the pain and I can't walk. I can't step up on the bus stairs and I worry I'll start to have more flare-ups” (48)a “I could never understand why I would get sick sitting in the sun. Nobody gets sick from sitting in the sun. I would come in from being outside and feel like I had the flu. I could be in bed for two days with aches and pains” (53)a “When you plan on something … you can't engrave it in stone 'cause you never know how you're going to feel” (56)a “… it's so inconsistent, so to speak, it's so variable. I often say SLE is cancer number two, because you don't know if you will be able to be so very lively today, but you'll be having a flare-up next week, just like that, it's so very unpredictable …” (69)a	24-26, 29, 30, 46-49, 53, 54, 56, 58-63, 67, 69, 70, 72, 73, 76, 78
Postponing parenthood	“I'm kind of torn between having and not having [children], because I would like to, but then I think, I have lupus, what's gonna happen? Are my kids gonna be born with lupus or will I even be able to have children? Am I going to get very ill? You know, it's just … [pause] I'm torn. Ideally I would love to have children. I can't think of any woman who wouldn't. But not right now, maybe after I'm done with school, and I have my career and my life set the way I want it. Because that's gonna be a difficult task, that's gonna be like a job, for me to have a kid. It's not like a woman who has perfect health, she can have a baby and do this or that. I'm gonna have to be very prepared for it … I'd like to have children someday, but not right now” (27)a “My concern is for the future and having kids worry me especially with miscarriages and that. I worry if I am having a really bad couple of weeks at work and under a lot of pressure if that will affect it” (24)a
	“It can be very daunting when I really sit and think. Chances are that my mother will outlive me. Even though I drink plenty of water and try to take care of my kidneys, my chances of kidney failure are greater than 75% of the non-lupus population. If I were to get pregnant, I stand a greater chance of miscarriage” (70)a A Chinese participant described the stress experienced when plans for a baby were put on hold due to a disease flare: “It worries me, and I kind of feel stressed because my husband is an only son, so it adds a certain stress to me” (72)a	24, 27, 28, 30, 47, 70, 72, 80
Disrupted identity
Gaining diagnostic closure	“Actually [breathes out] I was relieved because it sort of made me realize that I really wasn't crazy and that I hadn't made this stuff up in my own mind. That there was a real entity. That there was something that they could put their finger on that was causing all of these symptoms. So I was pretty much relieved. A weird relief but a relief” (62)a “I have to admit the diagnosis of SLE [systemic lupus erythematosus] and Sjögren's was actually a relief. I had suspected for more than a year that I had an autoimmune disease, and now I had a legitimate name for all the trouble I'd been having” (70)a	29, 30, 39, 53, 58, 62, 70
Prognostic uncertainty	“I was very, very devastated. I was concerned [voice quivering]. My biggest concern was working in the OR [operating room], I saw a lot of people come through for the vascaths [dialysis catheters] and the graphs for dialysis and all that. Frankly that's my biggest fear that I will end up going on dialysis because I'm not a person who likes to be confined. Even if I've ever been in the hospital, I need to get out of there because I go crazy. I just can't imagine having to do dialysis. I think that was my biggest fear. I was very upset” (62)a Younger patients felt that the disease was a hindrance to their career progression mainly because they were unsure how their disease would be in the future and whether they could take on more responsibility (24)	24, 25, 27, 29, 48, 62, 71, 72
Being a burden	Many expressed guilt over their physical limitations and the subsequent increase to the workload on others (47) “It makes me feel dependent where I've never been dependent. I feel not as competent as I was. I have a fear of being independent to them and very incompetent. I don't want to get to where I can't handle everything. I know there will be some time when that is going to come … I have a fear of losing my independence” (47)a “I guess I just feel guilty in bringing this [lupus] into my role as wife and mother … I am so good at helping other people … I don't like the idea that I am the one who needs to rest and take a break” (39)a	24, 27, 29, 30, 39, 47, 48, 56, 58, 63, 69, 70, 72, 75, 76, 80
Hopelessness	“I feel sad most of the day, just trying to go about my business is exhausting, and the thought that I may never feel better than this, is so depressing” (48)a “You cry and you have different mood swings. You cry. You're depressed. You feel worthless. You feel like nobody don't care about you” (56)a “(…) I try to talk to myself a lot. ‘Accept it, believe me it'll be better for you, you'll take it much better.’ But I can't, I can't make peace with it. I hate it. It's like I blame it for destroying my life. It wrecked the entire course of my life” (26)a “I didn't even want to get out of bed … I pretty much wanted to die. I thought, if this is how I have to live the rest of my life, I don't want to live” (29)a	24, 26-30, 39, 48, 50, 53, 56, 58, 60, 62, 63, 68, 69, 72, 76, 79, 80
Heightened self-consciousness	“I'm so embarrassed about how my body looks. The meds caused weight gain and I'm a young woman, but I don't feel like it anymore and I don't look like it anymore. I feel like I'm just not myself and people who look at me don't know who I really am inside. They see a sick, bloated woman and it just makes me feel so discouraged” (48)a “My image of myself was a lot worse than I looked, probably. But my face was a moon face, and my neck was thick, and your skin feels bad, your hair falls outta your head, you feel awful, and I lost my menstrual cycle and had really no sexual feelings” (27)a “I have severe rashes on my upper body and I get stared at and sometimes hurtful comments from people. I have found a peace within to ignore all the negatives. I no longer feel out of place because of my skin or my disease but I do sometimes feel insecure about my looks” (70)a	24, 25, 27, 29, 30, 48, 53, 56, 60, 62-65, 70, 72, 76, 77
Fearing rejection	“And I'm really scared that if I tell him, he probably won't want to marry me because something's wrong” (27)a “My husband, I didn't tell him a lot because he just couldn't cope with it he just walked away” (78)a When her date asks, “What's wrong?” she feels pressured to share the fact that she has lupus, but fears that it will drive that person away (29)	26, 27, 29, 64, 65, 75, 78
Guilt and punishment	“I strongly believe I caused myself and body to be ill. I didn't nourish it as I should have, didn't water it, my kidneys, I was always stressed out exams, this and that, a kind of superhyper type. So they gave me a kick to the face sit down, take it easy, eat right, have breakfast, have lunch. (…) I think I destroyed my body with my own hands. If I have this thing called lupus, I've brought it upon myself” (26)a “It could be an attack by a witch from the mistress of the father of my children. In a dream I had a fight with that woman” (28)a “But I remember, after the abortion, I had a whole lot of health problems. So maybe it was after the abortion that it was triggered …” (28)a	26, 28, 29, 53
Societal stigma and indifference
Illness trivialization	“I can be fine for months at a time, and then it hits me. It's exhausting. My friends don't understand, that when I say I'm too tired, I don't mean I'm a bit tired, I mean, I feel like I have the worst flu anyone ever had and I physically can't get up” (48)a “My ex-husband … thought that when I was getting sick that I was faking it and that I was hallucinating and I wasn't really as sick as I portrayed to be so we ended up divorcing” (63)a	24, 26, 27, 29, 38, 45, 47-49, 53, 56, 60-64, 67-70, 72, 73, 76-78
Socially ostracized	“I don't have a lot of friends … the people my age, they are so cruel, ‘Oh look at her she is so ugly, look at her! Look at her!’ They are so cruel and so mean. It's unreal, it is so unreal; and it makes me hate to go to new places and places I've never been because I hate going, I hate to get the stares, and the look, and the whispers … hate it. I really haven't been going to parties, I don't go to clubs. When I go to places I just stay to myself I'd like to be invisible if I could, just disappear, be there but be invisible, I would do that just so I don't have to endure the cruelness of people” (63)a	26, 29, 60, 62, 63, 72
	“My face will be puffy and very red. If I wait for a lift, I find that my neighbors all avoid me, they don't want to go in the same lift as me” (72)a “They think this is contagious. Even my family, my sister-in-law, said ‘you take your food separately’” (72)a “If I couldn't go to whatever event or function then, you know, you get dropped from the list. So the invitations stopped, but then the phone calls stopped” (29)a
Averse to differential treatment	“When we first got married it was a case of Kate's got lupus so she can't do anything, it's not that I couldn't do anything but he didn't want me to … ‘I'll do it, I can do that’ … very protective, and … since then I have been able to say, ‘Look I want to be able to do something … it's all very well you waiting on me hand and foot, but what happens when you have to go away for a week… . Do I get someone in?’” (59)a “My colleagues or friends, who know I have lupus, they will see me in a different light, they see me as very fragile. I don't like any special treatment” (72)a	27, 29, 30, 59, 68, 72, 80
Gaining resilience
Optimism	“If you allow it to beat you it will. Strength of will. Try to be as normal as possible. Don't feel sorry for yourself” (53)a “Just each day when I wake up in the morning to pray to God; and then look in the mirror and say ‘I am going to live today, I'm not going to let this devil get me,’ and lupus is so far out of my reach that I don't want to even reach for it; because that's what I have to do every morning, even in the midst of the pain. I sound strong sometimes but when you're sick and you're lying in the bed and your body hurts and your mind is weak and your muscles are tired, and the pains are hitting you, you know, it's just like … you're not gonna get me, no you're not” (63)a “I am better able to prioritize owing to the SLE because I've been forced to prioritize; I think perhaps one could call this a small advantage …” (69)a	26, 29, 30, 39, 47, 48, 51-53, 56, 58, 60, 62, 63, 65-67, 69, 73, 80
	“I believe every experience offers fortitude, endurance, and strength of character if I am willing to learn from it. Today I will welcome this teacher into my life, looking for what I can learn rather than fighting or fearing it, thereby freeing my mind to enjoy as much as possible” (39)a
Control and empowerment	“You never want to push yourself. I was very active, and there's a limit now as far as pushing myself physically. Even emotionally. Even if I'm going to get angry, I've got to think that could cause a flare-up. Basic control, I guess. I don't go out two nights in a row, that type of thing” (53)a In addition to the mental struggle, structure and restrict, the respondents described a selection of actions to provide strength to deal with the fatigue. The women emphasized that the actions did not eliminate fatigue, but gave more power to accomplish things (73) “I take care, because I think that getting upset can cause flares. I try to keep calm and worry less” (28)a	26, 28-30, 39, 45-47, 53, 62, 63, 65-70, 72, 73, 77, 79, 80
Being informed and involved	“I would not have coped nearly as well had I not had that resource of knowing what other patients are going through and knowing what the latest research is, what studies have been done, what books have been written, and what doctors are really working on the illness. Knowing that there are better educated doctors and that there is ongoing data coming out about the disease is helpful. I would probably not know even what symptoms to report to the doctor had I not become knowledgeable” (47)a “The more I learn about the illness, the better I feel. I study on the internet, so that I know when to recognize a real symptom, when to call my doctor and when to take a breath and let it pass. I go to a meeting at my hospital. My rheumatologist has a meeting about lupus and even if it's once a year, I always learn something that helps me understand what I'm going through” (48) “I suppose because you know more about it you are not inclined to think the worst” (58)a	29, 45, 47, 48, 50, 52, 53, 58, 60-62, 71, 78
Valuing mutual understanding	“I think just sheer determination that I'm going to keep going and I'm willing to do it. It seems the people I've met that had lupus were very strong people. I haven't met anyone who wasn't; I don't know if the lupus causes it or vice versa. I feel they have strong constitutions and are very determined, not going to let things keep them down long. I think I'm a survivor. I do what I have to do to get something done” (47)a “… when I first found out I had lupus, I started going to the lupus support group meetings… . Everybody is so nice. I mean it's just like a family. There's a closeness, you know? When somebody is sick or not feeling well and you send that person cards or that person sends you cards or they'll send you flowers or whatever. It's a closeness. It's like a family” (62)a “… there is a big difference when you meet someone who is just like you, feels like you” (78)a	30, 38, 39, 42, 47, 48, 62, 63, 71, 78
Treatment adherence
Preserving health	“I stopped taking the steroids and the hydroxychloroquine and within six months, I had a flare up and I was in hospital again. Those were the only two times I have been in hospital” (52)a “When I first got it, I thought it was severe, a major problem, but it's not really as long as you keep taking your drugs and you are happy, your lupus is just fine” (58)a	28, 47, 51-53, 58, 62, 67, 69
	“I was just relieved especially when the cortisone shots started working that I just really had some decrease in pain. Because that was all I wanted—just somebody to put the pain down a little bit and help me maybe not be so tired. … that's all I wanted—just a little relief. That's all I wanted. I was relieved at least maybe to have something that was going to help me” (62)a “… I can be grateful for those pills, right? How could I live if they didn't exist … ? No, we don't know. Yes, I'm sure that I'd have gone under if those medicines hadn't stopped the awful flare-ups that I had, it's them [the medication] that sharpen me up again …” (69)a
Rapport with clinicians	Some patients felt obligated to take their medications because family members/partners and health care workers had invested so much time and effort into helping to manage their disease (52)	25, 29, 30, 42, 47, 49-52, 54, 57, 61, 62, 66, 75, 78
	Often, the women said that because so many people were involved in their health care, they did not feel that anyone got to know them sufficiently well. The women felt that they had no specific point of contact with whom they felt comfortable enough to discuss issues in any depth. “… it's not as if you can talk to one person [health care provider], you've got all these different people and somehow along the line they never all link up” (61)a The women expressed a strong desire to have more open and mutually influential partnerships with their doctors, in which they could be active participants in the decision-making process with respect to their own care and treatment (29)
Negotiating medication regimens	“I would rather die than go back on the prednisone. It is a bad drug and I just won't do it. He said, ‘Yes, you will.’ I said, ‘Well, let's wait until it happens and then we'll see. But don't ask me to do it’” (50)a	47, 50-53, 57, 61, 66, 69
	“… whenever I take it, I tend not to feel good, so like every time I keep on buying it, then start like taking two days, I notice I'm getting headache, upset stomach, so I keep some in the fridge, I don't bother with it, 'cause it makes me feel worse'” (52)a “I also reduced (prednisolone dose) to 7.5, which means I'm tired all the time. I know I have only got to take the 2.5 mg more and I know I will lead a normal life … but as I say with the old osteoporosis that scared me witless. So that's what I'm doing” (52)a “… we have 2 things that are attacking us, the medicine and the disease” (57)a
Financial burden	“… sometimes I don't have the money to buy it … that's the only time I don't take it, when I don't have the money” (52)a “My medication was 2 dollars per prescription and you see how many prescriptions I have to get. So, it was hard for me to get them sometime. So, they would look at me like, why aren't you taking this? Well, if you give me the money, I will go buy it right now” (57)a “I fear that when the flares and attacks come, these cause a lot of medical fees and money to be spent. I also take a long leave from work, so sometimes I have a fear I will have to give up my job. From there, it affects my family because there's no income” (72)a	30, 45, 48, 52, 57, 70, 72

• ^a Quotations taken directly from participants.

Figure 2

Thematic schema representing experiences and perspectives of adults living with systemic lupus erythematosus (SLE).

Restricted lifestyle

Pervasive pain

Participants in 18 studies described the pain and stiffness in the joints and muscles as unpredictable and disabling, occurring in a “vicious cycle” (24). This often interfered with the participants' daily activities and their mood. When participants experienced excruciating pain, they felt incapacitated, depressed, and unable to sleep, exercise, and work, and struggled to accomplish simple tasks such as getting dressed.

Debilitating fatigue

Participants in 21 studies were overwhelmed by fatigue and lethargy. They felt frustrated and hopeless about their role limitations in work and household responsibilities and family and social activities. In several studies, women described feelings of frustration and a sense of being incapable of performing tasks that were required to carry out their jobs. Some women made the decision to cease contribution to the job force, i.e., to “hang it up” (stop working altogether).

Mental deterioration

Some participants in 7 studies believed that SLE had affected their brain and felt that their ability to recall certain memories was not the same as before. They worried about being incapable of performing daily tasks and some were forced to resign from their jobs.

Disruptive episodic symptoms

The unpredictability and multiplicity of symptoms were perceived by the participants in 25 studies to have a chaotic impact on their lives. Their daily and leisure activities became severely limited, since stress, sun exposure, and weather could trigger a relapse and aggravate the symptoms. The constant anticipation about the possible onset of symptoms meant participants felt perpetually worried. Some found it difficult to commit to their work schedules.

Postponing parenthood

In 8 studies, some women avoided or delayed pregnancy. They were anxious about the risks of pregnancy complications, miscarriage, and genetic predisposition to SLE. They also doubted their ability to perform mothering tasks.

Disrupted identity

Gaining diagnostic closure

Prior to being diagnosed with SLE, some patients in 7 studies lived in limbo for years. They experienced “unexplained” erratic symptoms that were incorrectly diagnosed. Some were exasperated when they felt ignored by doctors and accused of being a hypochondriac. When finally diagnosed with SLE, participants felt relieved because it validated their symptoms. On the other hand, a few struggled to accept the reality of the illness, suffered silently in pain, and did not actively seek a diagnosis or treatment.

Prognostic uncertainty

In 8 studies, the participants expressed living in fear as they thought about disease complications and the uncertainty of the disease. Participants described SLE as an “aggressive and expansive” (25) disease. Some participants dreaded the possibility of having kidney failure and were terrified about dialysis. In one study, younger patients in particular perceived the uncertainty to hinder their social life and career advancement, and they doubted their capacity to manage additional responsibilities (24).

Being a burden

Participants in 16 studies felt physically incapacitated by the disease, and were fearful and frustrated about losing their independence. They believed they were an onerous burden to family and friends, whom they had to rely on for physical assistance and emotional support.

Hopelessness

Participants in 21 studies felt that SLE had “wrecked the entire course” (26) of their life, and were pessimistic about the future. They believed that there was no hope for remission or recovery. Some expressed that it was difficult to continue living and contemplated suicide.

Heightened self-consciousness

Due to malar rash, hair loss, joint swelling, and corticosteroid-induced weight gain, many female participants in 17 studies experienced loss of self-esteem and impaired self-image. They felt acutely conscious about how others would look at them, and were embarrassed when questioned or teased about their physical appearance. Wigs and long-sleeved shirts were worn to conceal their symptoms. Feeling unattractive, some withdrew from social settings, and a few stated they had lost their sexual drive. A participant in one study felt she had lost her femininity because her menstrual cycle had ceased (27).

Fearing rejection

Some participants in 7 studies denied the diagnosis or “hid” their physical symptoms and pain in an attempt to avoid rejection or abandonment. They were averse to being labeled as a sick person. A few kept the disease to themselves to preserve a “normal” identity. Some were worried that they would not be able to find a partner because of SLE.

Guilt and punishment

In 4 studies, some participants believed that their illness was the consequence of living an unhealthy, stressful, or “immoral” lifestyle, or viewed SLE as a punishment from God. In one study conducted in France, migrants from Africa believed that their illness was a curse or a test from God (28). One study found that having the illness also caused some participants to doubt their faith (29).

Societal stigma and indifference..

Illness trivialization

In 24 studies, some participants felt a lack of understanding and empathy from family members, friends, and their treating physician because of the invisibility of their symptoms. They felt others labeled them as a hypochondriac and were sometimes accused of feigning symptoms to excuse themselves from work or study. The perceived trivialization of their pain and fatigue led to social isolation, relationship conflict, marital divorce, and loss of employment or job opportunities.

Socially ostracized

Some participants in 6 studies believed that their relatives and friends perceived SLE as contagious and deliberately kept their distance. The participants felt shunned and rejected by others who directed callous comments or repulsive looks toward them, particularly when the symptoms flared.

Averse to differential treatment

Seven studies stated that the participants' sense of freedom and independence was limited if they perceived their family and friends to be overprotective and intrusive. Those who were studying or working did not want sympathy or differential treatment as a sick person, but valued flexibility so they could manage their symptoms better (30).

Gaining resilience

Optimism

Participants in 20 studies coped with SLE by accepting their limitations and developing positive mental attitudes. The emotional and physical support offered by family, friends, and clinicians encouraged them to maintain a positive outlook, and they felt more motivated to persevere and cope with the illness. Some pursued spiritual inspiration for strength, while others sought counseling to help them cope emotionally with the challenges of SLE. They strived to live a “normal” life.

Control and empowerment

For some participants in 22 studies, they learned to master their bodies in order to withstand the pain and fatigue. They strived to focus on remission, adopted a healthy lifestyle, including diet modification and regular exercise, and avoided stress and overwork that could trigger or exacerbate the symptoms. These strategies enabled them to feel empowered and remain active in performing daily work and participating in social activities.

Being informed and involved

Access to accurate and comprehensive information about SLE was deemed important in 14 studies. Participants wanted to gain knowledge about the impact of SLE on their lives, treatment and potential side effects, current research on SLE, and lifestyle management. Some also emphasized the importance of extending education about SLE to help family members understand the illness and how to cope with SLE and its impacts. Knowing about the possibility of remission or recovery gave participants hope and they were able to develop better coping strategies and a more positive outlook toward life. Some participants also valued involvement in decision making regarding medication and treatment options.

Valuing mutual understanding

In 10 studies, all participants who were members of a support group felt understood by those experiencing a similar illness. Interactions with other SLE patients also promoted a sense of normality and allowed them to share their feelings, experiences, and coping strategies. They found comfort in knowing that they were not alone.

Treatment adherence

Preserving health

Participants in 9 studies believed that their prescribed medications were effective for relieving the severity of SLE symptoms, which would enable them to maintain their well-being and ability to work, perform household duties, and participate in recreational activities. To avoid the risks of symptom flares, they were vigilant in taking medications as advised.

Rapport with clinicians

Sixteen studies found that effective communication and understanding by clinicians promoted a sense of trust and respect among participants. Medication adherence was a way of demonstrating their appreciation toward their treating clinician. Some emphasized the importance of consulting the same physician to encourage more open and in-depth discussion regarding SLE and its treatment.

Negotiating medication regimens

In 9 studies, many participants did not take their prescribed medications because they forgot or chose to discontinue due to a large number of pills. However, some doubted the efficacy of the medications and felt it was not worthwhile to take them. They wanted to avoid drug dependence, and were fearful of the immediate and potential long-term side effects, including weight gain and osteoporosis. Some took medications only when symptoms flared, or adjusted their doses according to their symptom status or perceived “need” for medication. Also, participants wanted to know about alternative treatments in an attempt to counteract the side effects.

Financial burden

Some participants in 7 studies felt burdened by the costs of ongoing medications, which was more evident among participants from a lower socioeconomic background and those who became unemployed due to SLE. Some felt guilty about having to rely on financial support from family members.

DISCUSSION

SLE has a severe and pervasive impact on patients' self-esteem and QOL despite substantial improvements in treatment and patient survival. The unpredictable nature of the illness meant that patients felt they lived in constant uncertainty. Patients experienced pervasive pain, debilitating fatigue, and reduced mental acuity, which limited their physical and social functioning. Patients were fearful of losing their independence and felt they were a burden to their family. Some experienced a lack of understanding and empathy from others, which was largely due to the invisibility of the illness. Patients also felt ostracized by family members who believed SLE was contagious. Those who perceived that recovery or remission was not possible felt a profound sense of hopelessness. Women with SLE felt unattractive, self-conscious, and afraid of rejection, and some postponed parenthood in fear of pregnancy complications and genetic transmission of SLE to their child.

However, many patients strived to master their illness and to overcome their limitations by maintaining a positive attitude and making practical lifestyle adjustments. They focused on remission and developed resilience and optimism through spiritual and social support. Patients adopted a healthier lifestyle, adhered vigilantly to their treatment regimen, and actively pursued information and social support to cope with SLE and maintain their health.

The themes we identified in this study share similarities with the experiences of patients with other connective tissue diseases that involve a number of common clinical features with SLE, including rheumatoid arthritis and systemic sclerosis. Patients with rheumatoid arthritis also experience physical restriction, difficulties in maintaining social relationships, constant anxiety about the future, and loss of independence (31-33). In comparison, patients with SLE and systemic sclerosis typically experience more diverse disease manifestations, including arthritis, sicca symptoms, alopecia, and Raynaud's phenomenon, and this can further contribute to loss of physical, social, and emotional functioning. Qualitative studies in systemic sclerosis have also found that patients experienced distress about their physical appearance, fear of rejection, stigmatization, and social isolation (32, 33).

In this study, we used software for data management to facilitate an auditable development of themes. Two reviewers independently reviewed the data to ensure that the thematic framework reflected the findings in the primary studies. This review included a range of insights from participants of diverse ethnicities and countries. However, only a small proportion of studies were from developing countries and non-English articles were excluded, which may limit the transferability of our findings. Also, many studies did not report on theoretical saturation (i.e., when few or no new concepts are raised by subsequent research participants), use of software to code the data, and feedback on the preliminary analysis from participants or other researchers. Therefore, an assessment of the credibility, dependability, and auditability of the studies is limited.

The complexity of SLE demands long-term and multiple- approach treatments (9, 34). Our study highlights the need for information and educational support to promote self-care, positive adjustment, and treatment adherence. Patients valued comprehensive information about SLE; the benefits and potential side effects of medications, alternative therapy, and treatment advances; and research about SLE. Effective communication about diagnosis and the disease course, involvement in treatment decision making, and good rapport with clinicians can promote and improve patients' capacity to cope with SLE.

Patients with SLE were anxious about the possible side effects of medications, such as developing infections, Cushingoid features, teratogenic effects, and medication dependence. Addressing patient concerns about medications, including treatment costs, side effects, and facilitating their involvement in treatment decision making, can promote treatment adherence, satisfaction, and improved health outcomes (13, 17).

The emotional challenges faced by patients with SLE are profound (10). Patients diagnosed with SLE can feel worthless and hopeless. Changes in bodily structures were conditions in which women felt unattractive or less descriptive of their feminine identity. Moreover, societal stigma, ostracization, and lack of understanding intensified their loss of self-esteem; some women felt the need to isolate themselves from social gatherings and others felt they faced relational difficulties and conflicts. Psychological and behavioral interventions can be effective for reducing fatigue and improving vitality in patients with autoimmune disorders, including SLE (10, 35). A systematic review found that psychoeducational interventions such as counseling, a stress management program, and cognitive–behavioral therapy resulted in significant improvements in anxiety, depression, stress, and disease activity in SLE patients. However, evidence of long-term benefits is still lacking (36). Social support can help patients with SLE achieve optimism and a sense of empowerment (37) and can include interventions such as family education, work place advocacy, and face-to-face or online patient support groups (38, 39).

Although emerging knowledge about autoimmunity and availability of advanced serologic tests have improved diagnosis and survival rates, the delay between the onset of SLE and diagnosis remains a challenge (34, 40, 41). Not only does undiagnosed SLE cause distress in patients, but a late diagnosis is associated with poor QOL and clinical outcomes (34). Strategies such as awareness campaigns targeted at the general community and primary care providers are suggested to minimize delays in diagnosis and prompt referral to specialist care. For example, studies have found that web-based platforms are often used by individuals to research their symptoms and can promote treatment seeking and diagnosis (42). Further qualitative studies exploring factors that initiate or delay treatment-seeking behavior among SLE patients are suggested.

A number of generic and specific QOL instruments such as the Systemic Lupus Erythematosus Quality of Life and Lupus Quality of Life questionnaires have been established for use in clinical care (43), but further evaluation for consistency, validity, and sensitivity to change has been recommended (44). The themes identified in this study may provide additional insights into the meaning and impact of SLE, including postponing parenthood, gaining diagnostic closure, and guilt and punishment. More qualitative research is recommended to elicit patient experiences and perspectives on issues yet to be addressed, such as patients' beliefs and perspectives on new therapies, including immunosuppression and monoclonal antibody therapy.

SLE is debilitating and patients must contend with unpredictable and pervasive pain, fatigue, multiorgan damage, physical limitations, stigmatization, and psychosocial challenges. The complexity of SLE demands long-term, multifaceted, and individualized care. Ongoing psychosocial support, education, self-care interventions, and active involvement in treatment decision making are needed to improve confidence, mental resilience, self-advocacy, and health management in patients with SLE. This is likely to contribute to improved health and QOL outcomes and treatment satisfaction among patients diagnosed with SLE.

AUTHOR CONTRIBUTIONS

All authors were involved in drafting the article or revising it critically for important intellectual content, and all authors approved the final version to be published. Dr. Tong had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.

Study conception and design. Singh-Grewal, Jones, Tong.

Acquisition of data. Sutanto, Tong.

Analysis and interpretation of data. Sutanto, Singh-Grewal, McNeil, O'Neill, Craig, Jones, Tong.