Nursing interventions for people with systemic lupus erythematosus: a systematic review

Abstract

Background

Systemic lupus erythematosus (SLE) is a chronic, multisystem autoimmune disease characterised by diverse clinical manifestations that require multidisciplinary care. Across diverse care settings, nurses play a central role in supporting patients through education, psychosocial support and self-management strategies. However, evidence on nurse-led interventions and their effects on health outcomes in people with SLE remains fragmented.

Objectives

This systematic review aimed to synthesise existing evidence on nurse-led interventions for adults with SLE and their effects on health outcomes.

Methods

We systematically searched CINAHL, PubMed, Embase, Web of Science, Trip Database and the Cochrane Library in July 2026, with additional searches of Google Scholar. Eligible studies included adults with SLE, evaluated nurse-led interventions and reported at least one health outcome. Quantitative intervention studies published in English or French between 2016 and 2026 were included. Methodological quality was assessed using the Joanna Briggs Institute critical appraisal tools. Data were extracted on study characteristics, interventions and health outcomes. Due to heterogeneity in study design, interventions and outcomes, a narrative synthesis was conducted.

Results

Twenty-four studies were included. Nurse-led interventions primarily focused on therapeutic education and self-management, psychological and psychoeducational support, and lifestyle and self-care interventions. Improvements were most consistently reported in SLE-related knowledge and self-management and quality of life, with additional benefits reported for fatigue, pain and psychological outcomes.

Conclusion

Nurse-led interventions may improve several health outcomes in adults with SLE, particularly SLE-related knowledge, self-management and quality of life. However, heterogeneity across interventions and outcomes, together with methodological limitations and risk of bias, limits the certainty of the evidence. Further research is needed to strengthen the evidence on the effectiveness of nurse-led interventions in adults with SLE through rigorous study designs and longer follow-up.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Adults with systemic lupus erythematosus (SLE) face complex health challenges, including multisystem manifestations, unpredictable flares and impaired quality of life.

• Nurse-led interventions may improve self-management and patient-centered outcomes in chronic diseases, but evidence in adults with SLE has remained fragmented.

WHAT THIS STUDY ADDS

• This systematic review synthesises evidence from 24 studies evaluating nurse-led interventions for adults with SLE.

• Nurse-led interventions were associated with improvements in disease-related knowledge, self-management behaviors, self-efficacy, quality of life and psychological outcomes in adults with SLE.

• Therapeutic education and self-management support were the most frequently evaluated intervention approaches.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• The findings provide preliminary evidence to support the development and evaluation of structured nurse-led interventions within multidisciplinary SLE care.

• Future research should prioritise rigorous study designs, longer follow-up, standardised outcome measures and broader geographical representation.

• The findings may inform policy discussions regarding the role of nurses in supporting education, self-management and psychosocial care for adults living with SLE.

Introduction

Systemic lupus erythematosus (SLE) is a chronic, multisystem autoimmune disease affecting approximately 5–7 million people worldwide.¹ Compared with the general population, people with SLE experience two- to threefold higher morbidity and increased mortality, making SLE a major public health concern.² The global burden of SLE is unevenly distributed, with prevalence estimates ranging from 4 to 178 cases per 100 000 inhabitants,³ and particularly high prevalence estimates reported in the United Arab Emirates, Barbados, Cuba and Brazil.⁴ SLE predominantly affects women, with a disproportionate burden among people of African, Hispanic/Latino, Asian and Native American heritage.^{5 6} These disparities reflect a complex interplay of genetic, environmental, socioeconomic and healthcare access factors,^{7 8} potentially contributing to differences in disease outcomes and access to care among people living with SLE.

SLE has highly variable clinical manifestations and an unpredictable course, with disease severity ranging from mild to life-threatening depending on organ involvement.^{5 9} Flares and persistent symptoms such as fatigue and pain can contribute to psychological distress and reduced quality of life among people with SLE.¹⁰ Although pharmacological treatments aim to control disease activity and prevent complications, many people continue to face challenges in managing their condition.^{9 11 12} These include insufficient disease-specific information, limited self-management support and unmet psychosocial needs, which can negatively affect their quality of life and overall well-being.^{12 13} These unmet needs highlight the potential role of nurse-led interventions in supporting long-term disease management in people with SLE.

Nurse-led interventions are defined as interventions delivered by registered nurses, including those in specialist or advanced practice roles, who take a primary role in coordinating care and providing clinical monitoring, health education, lifestyle support, symptom management and follow-up tailored to patients’ needs.¹⁴ Through ongoing patient contact and therapeutic relationships, nurses can provide continuity of care, promote patient empowerment, support self-management and address educational and psychosocial needs.^{15 16} Evidence from chronic disease management suggests that nurse-led interventions may improve self-management, quality of life, treatment adherence and psychosocial outcomes.^{11 17 18} These aspects of care are particularly relevant in people with SLE, given the chronic and unpredictable nature of the disease and the importance of patient engagement in care.¹⁹ The European Alliance of Associations for Rheumatology (EULAR) recommendations for SLE management similarly emphasise a multidisciplinary and individualised approach that incorporates patient education, self-management support and shared decision-making tailored to patients’ needs and preferences.²⁰

However, evidence on nurse-led interventions specifically for people with SLE remains fragmented, and their characteristics and effects on health outcomes have not been comprehensively synthesised. To address this gap in knowledge, this systematic review aimed to synthesise existing evidence on nurse-led interventions for adults with SLE and their effects on health outcomes. Specifically, the review addressed the following questions:

1. What nurse-led interventions have been evaluated among adults with SLE?

2. What are the effects of nurse-led interventions on health outcomes among adults with SLE?

Methods

Protocol and registration

This systematic review was guided by a broad search strategy and conducted in accordance with the 2020 PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines.²¹ The review protocol was retrospectively registered in the Open Science Framework (OSF; DOI: 10.17605/OSF.IO/7UE5V) to enhance transparency and reproducibility.

Search strategy

An updated comprehensive literature search was conducted in July 2026 in CINAHL, PubMed, Embase, Web of Science, Trip Database and Cochrane Library. The search strategy combined controlled vocabulary terms and free-text keywords related to systemic lupus erythematosus and nursing interventions. Search terms were adapted to each database and combined using Boolean operators ‘AND’ and ‘OR’. Grey literature was also explored through Google Scholar to identify potentially relevant evidence not captured in bibliographic databases. Backward citation searching was also conducted by screening the reference lists of included studies to identify additional relevant records. These complementary approaches aimed to identify additional relevant evidence from complementary sources and reduce the potential risk of publication bias.^{22 23} However, only sources meeting the predefined eligibility criteria were considered for inclusion. The complete search strategies for all databases and information sources, including keywords, controlled vocabulary terms (eg, MeSH terms), Boolean operators, filters, and limits applied, are provided in online supplemental table S1. References were managed with Zotero and exported to Covidence, a web-based collaboration platform that facilitates the conduct of knowledge syntheses.²⁴

Eligibility criteria

In this review, nurse-led interventions were defined as interventions in which registered nurses had primary responsibility for planning, delivering, coordinating, monitoring or evaluating the intervention.¹⁴ Multidisciplinary interventions were included when the nursing component was clearly described and sufficiently prominent to allow its specific contribution to the intervention to be distinguished from that of other healthcare professionals. To guide study selection, health outcomes were defined as measurable indicators of patients’ health, well-being or health-related behaviors, including clinical, patient-reported, psychosocial, behavioral and knowledge domains.

Studies were eligible if they included adults (≥18 years) diagnosed with SLE, evaluated nurse-led interventions, reported at least one health outcome and used a quantitative intervention design. Articles published in English or French between 2016 and 2026 were included. Studies were excluded if they involved children or adolescent populations, interventions for which the nursing role could not be clearly identified, lacked health-related outcomes or did not report original quantitative empirical data. Excluded publication types comprised systematic reviews, scoping reviews, meta-analyses, Delphi studies, qualitative studies, editorials, commentaries, letters, conference abstracts, protocols without published results and other publications not reporting original empirical data. The detailed eligibility criteria are presented in table 1.

Table 1. Study eligibility criteria.

Study characteristic	Inclusion criteria	Exclusion criteria
Population	Adults (≥18 years) diagnosed with SLE	Children and adolescents with SLE
Intervention	Nurse-led interventions	Interventions in which the nursing role could not be identified or distinguished from the roles of other healthcare professionals
Comparator	Any comparator, including usual care, alternative interventions or no comparator	None
Outcomes	Health outcomes	Studies not reporting health-related outcomes
Study design	Quantitative intervention studies evaluating nurse-led interventions	Systematic reviews, scoping reviews, meta-analyses, Delphi studies, qualitative studies, editorials, commentaries, letters, conference abstracts, protocols without published results and other publications not reporting original empirical data
Publications	Articles published in English or French between 2016 and 2026	Articles published outside the specified period or in languages other than English or French

SLE, systemic lupus erythematosus.

Study selection

Two reviewers independently screened titles and abstracts, followed by full-text assessment of potentially relevant studies according to the predefined inclusion and exclusion criteria. The screening and selection process was conducted using Covidence. Discrepancies were resolved through discussion, ensuring a rigorous and transparent selection process.

Data extraction

Data were independently extracted by two reviewers using a standardised data extraction form within Covidence. Extracted information included: study identification (author, year, country), study objectives, study design and methodology, participant characteristics (sample size, age, sex, inclusion/exclusion criteria), intervention details (description, provider, setting, duration and frequency), comparator (if applicable), outcomes and measurement instruments and any additional notes or comments.²⁴ Health outcomes reported after the intervention were extracted to assess the effects of nurse-led interventions. Missing or unclear information was recorded as ‘not reported’ or ‘not specified’ when applicable. No assumptions were made regarding missing data.

Quality assessment

The methodological quality of the included studies was assessed by one reviewer using the Joanna Briggs Institute (JBI) critical appraisal tools appropriate to each study design, including the tools for randomised controlled trials (RCTs)²⁵ and quasi-experimental studies,²⁶ which contained 13 and 9 questions respectively. Each criterion within the tools was rated as ‘yes’, ‘no’, ‘unclear’ or ‘not applicable’.^25–27 A total score was calculated for each study based on the number of criteria rated ‘yes’.

Data synthesis

A narrative synthesis was conducted due to substantial heterogeneity across included studies in terms of study designs, intervention characteristics, outcome domains and measurement instruments. Given these differences, a meta-analysis was not considered feasible. A meta-synthesis was also not undertaken, as no qualitative studies met the inclusion criteria. Data were synthesised according to study and intervention characteristics and reported outcomes. Interventions were compared based on their objectives and main components and grouped into three categories: (1) therapeutic education and self-management support; (2) psychological and psychoeducational interventions; and (3) lifestyle and self-care interventions. Findings were synthesised and presented using descriptive tables and narrative summaries of study characteristics, interventions and outcomes.

Results

Study selection

The database search identified 851 records, of which 701 remained after duplicate removal. After screening the titles and abstracts, 42 full-text articles were assessed for eligibility. A total of 24 studies met the inclusion criteria and were included in the review. The study selection process is illustrated in the PRISMA flow diagram (figure 1).^{21 28} Reasons for full-text exclusions are provided in online supplemental table S2.

Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flow diagram illustrating the study selection process for the systematic review, including numbers of records identified, screened, excluded and included (Generated using Covidence, https://www.covidence.org/).

Study characteristics

Among the 24 included studies, most were conducted in Egypt (n=12), followed by China (n=5), Iran (n=3) and Turkey (n=2). Additional studies were conducted in India and Indonesia (n=1 each).^{29 30} Study designs included quasi-experimental studies (n=16) and RCTs (n=8). Participants were recruited primarily from rheumatology outpatient clinics, hospital departments and specialised SLE clinics. Sample sizes varied widely, from 34 to 200 participants. Detailed characteristics of the included studies and reported outcomes are presented in online supplemental table S3.

Methodological quality assessment

The results of the methodological quality assessment are presented in online supplemental table S4. Among RCTs, appraisal scores ranged from 8/13 to 11/13. The main concerns were related to blinding of participants and those delivering the intervention, as these criteria were not met in most studies. Allocation concealment was also frequently unclear or insufficiently reported. Among quasi-experimental studies, appraisal scores ranged from 6/9 to 9/9. The main concerns related to the absence of a control group and unclear reporting regarding whether participants received similar care other than the intervention of interest. These limitations should be considered when interpreting the effects of nurse-led interventions.

Types of nurse-led interventions

The nurse-led interventions identified in the included studies were grouped into three main categories based on their primary focus and core components: (1) therapeutic education and self-management support, (2) psychological and psychoeducational interventions and (3) lifestyle and self-care interventions. Interventions were delivered through face-to-face, telephone, web-based and telehealth modalities. Duration ranged from a single session to 20 months, with most studies reporting intervention periods between one to 8 months.^29–52

Therapeutic education and self-management support

Therapeutic education and self-management support were the most frequently reported nurse-led interventions (n=15).^{31–37 39 43–49} These interventions aimed to improve patients’ knowledge of SLE and strengthen their ability to manage disease-related symptoms and treatment-related demands. Educational content commonly addressed disease knowledge, symptom monitoring and management, medication management, treatment adherence, nutrition, physical activity and stress management. Interventions were delivered through various formats, including individual consultations, group education sessions, structured self-management programmes, telehealth interventions, smartphone-based support and web-based counselling. Educational booklets, audiovisual resources and digital platforms were frequently used to reinforce learning and facilitate patient engagement. Several interventions incorporated ongoing follow-up through telephone contacts, telehealth consultations or continuous care approaches to reinforce self-management behaviors and promote long-term disease management. Several interventions were guided by theoretical frameworks, including Orem’s Self-Care Model (n=1)³² and the Continuous Care Model (CCM; n=3).^{34 35 46}

Psychological and psychoeducational interventions

Psychological and psychoeducational interventions (n=3) focused on addressing emotional well-being and psychological adaptation to SLE. These interventions included individualised counselling, supportive counselling delivered through digital platforms, psychoeducational programmes, relaxation techniques, cognitive restructuring and strategies to improve coping and patient-family communication. Interventions were generally tailored to patients’ psychological needs and aimed to reduce anxiety, depression and health-related distress while promoting psychological adaptation and overall well-being.^{29 50 52}

Lifestyle and self-care interventions

Lifestyle and self-care interventions (n=6) focused on behavioral modification and the adoption of healthy lifestyle practices. Common topics included physical activity, nutrition, sun protection, infection prevention, stress management, fatigue management and strategies to prevent disease complications. These interventions sought to enhance self-care behaviors and encourage the integration of healthy habits into daily life as part of long-term disease management. Educational booklets, multimedia resources and home-based support were used in some studies to reinforce learning and promote adherence to recommended self-care behaviors.^{30 38 40–42 51}

Outcomes and nurse-led intervention effects

Outcomes varied across the included studies to evaluate the effects of nurse-led interventions (online supplemental table S2). The most common assessed outcomes were SLE-related knowledge, self-management behaviours, self-efficacy, quality of life, fatigue, pain and psychological outcomes including anxiety and depression. Clinical and treatment-related outcomes, such as disease activity, treatment adherence, complications and hospital readmissions, were assessed less frequently.^29–52 The LupusPRO and 36-Item Short Form Survey (SF-36) were the most frequently used measures of quality of life,^{34 36 41 42 46 47 50–52} while the Fatigue Severity Scale (FSS)^{37 40 41 43 48 49} and Brief Pain Inventory (BPI)^{35 41} were the most used measures of fatigue and pain, respectively. The Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) was the most frequently used measure of disease activity.^{44 47 48}

Regarding intervention effects, the most consistently reported benefits were observed for SLE-related knowledge and self-management including self-efficacy, self-care behaviors and medication adherence.^{31 34–46 49 51} Improvements in quality of life were also frequently reported across studies.^{34–37 39 42 44 46 49 51 52} Several studies further demonstrated beneficial effects on symptom-related outcomes, particularly reductions in fatigue and pain following interventions targeting symptom management and lifestyle behaviors.^{33 37 38 40 41 43 45} Psychological outcomes also showed improvements across several studies, particularly in anxiety, depression, coping and emotional adaptation.^{38 42 52} Effects on clinical and treatment-related outcomes included changes in disease activity, complications, hospital readmissions and treatment adherence.^{38 45–47}

Synthesis of findings

Overall, most studies used quasi-experimental design and were conducted in single-centre hospital-based rheumatology settings, with fewer rRCTs. Nurse-led interventions predominantly focused on therapeutic education and self-management support and were associated with improvements across multiple domains of SLE management. The most consistent findings concerned SLE-related knowledge, self-management behaviors, self-efficacy and quality of life. Improvements were also reported in symptom-related outcomes, particularly fatigue and pain and in psychological outcomes, while fewer studies reported improvements in clinical and treatment-related outcomes. However, substantial heterogeneity in intervention characteristics, outcome measures and study designs, together with methodological limitations such as the lack of control groups and limited blinding, should be considered when interpreting these findings.

Discussion

This systematic review synthesised evidence on nurse-led interventions targeting adults with SLE and their effects on health outcomes. The findings suggest that nurse-led interventions may contribute to improvements in patient-centered outcomes in adults with SLE, with the most frequently reported benefits relating to self-management, quality of life and psychological well-being. Therapeutic education and self-management support were the most frequently evaluated approaches.

The predominance of improvements in self-management-related outcomes may reflect the central role of self-management in the long-term management of SLE. Living with SLE requires individuals to monitor symptoms, adhere to treatment, cope with fatigue and pain and adopt health-promoting behaviors in daily life.⁵³ Consequently, interventions that strengthen patients’ disease-related knowledge, self-efficacy and self-management skills may be particularly relevant to the challenges of living with SLE.^{53 54} This may help explain the improvements in self-management-related outcomes observed across several nurse-led interventions included in this review. These findings are consistent with evidence from systemic autoimmune rheumatic diseases, where nurse-led interventions have been associated with improvements in patient-reported outcomes, including self-efficacy, quality of life, fatigue and mental health.¹¹ They are also aligned with current EULAR recommendations, which emphasise patient education and self-management support as key components of non-pharmacological care.²⁰

The findings also suggest potential benefits of nurse-led interventions for quality of life, which was the most frequently assessed patient-centred outcome in this review. This may reflect the capacity of nurse-led interventions to address multiple modifiable factors influencing patients’ daily management of SLE, beyond disease-related outcomes.¹¹ Interventions combining education, psychological support, behavioral strategies and lifestyle guidance are intended to help patients better understand and manage symptoms, adapt to fluctuations in disease activity and maintain participation in daily activities. The observed improvements across physical, emotional and social dimensions of quality of life may therefore reflect the cumulative effect of addressing multiple aspects of living with SLE within a single intervention. In this context, the potential value of nurse-led care may extend beyond improving specific self-management skills to supporting patients’ broader adaptation to the ongoing demands of a fluctuating chronic disease. This interpretation is consistent with evidence from other chronic disease populations, where comprehensive nurse-led interventions incorporating education, psychosocial support and symptom management have been associated with improvements in quality of life, including mental, social and physical domains.^{55 56}

Beyond these broader quality-of-life benefits, the psychological dimension warrants consideration given the uncertainty and emotional burden associated with living with SLE.^{10 13} Nurse-led interventions may be well positioned to address these challenges through patient education, ongoing follow-up and individualised support, consistent with recommendations highlighting the role of nurses in SLE management.⁵⁷ By providing opportunities to discuss concerns and develop coping strategies, these interventions offer support to patients in managing the challenges associated with the unpredictable course of SLE. This may be particularly relevant to psychological well-being, as uncertainty regarding disease flares and persistent symptoms can contribute to emotional distress.¹⁰ These findings are consistent with evidence from chronic disease populations showing that nurse-led psychosocial interventions can improve quality of life and reduce symptoms of anxiety and depression.⁵⁸

Taken together, these findings suggest that the potential contribution of nurse-led interventions in SLE extends beyond the provision of disease-related information. Their effects appear particularly relevant to patients’ ability to manage their disease, maintain quality of life and address psychological and emotional challenges. This may reflect the broader scope of nurse-led care, which can integrate education, behavioural support and psychosocial care within a patient-centered approach.

Limitations

This systematic review has several limitations that warrant consideration. First, the heterogeneity in study designs, intervention characteristics, delivery modalities, durations and outcome measures complicated direct comparisons across studies and precluded quantitative synthesis. Second, the predominance of quasi-experimental studies, together with common methodological concerns including the absence of control groups, limited blinding, unclear allocation concealment and the frequent use of self-reported outcomes, may have reduced confidence in the overall findings. Third, small sample sizes and relatively short follow-up periods may have limited the ability to assess the sustainability of intervention effects. Fourth, the evidence base was geographically concentrated, with half of the included studies conducted in Egypt and several others in China. Although a comprehensive search strategy was used across multiple databases and grey literature sources, relevant studies from the Global South indexed in regional databases may have been missed. This potential underrepresentation may limit the generalisability of findings across healthcare systems, cultural contexts and models of care in regions with a high burden of SLE. Restriction to English- and French-language publications may also have introduced language bias. Finally, retrospective protocol registration represents a limitation, as it may provide fewer safeguards against reporting bias and methodological deviations than prospective registration.

Implications

The findings of this review suggest that nurse-led interventions may contribute to addressing the educational, behavioral and psychosocial needs of adults living with SLE. Improvements in disease-related knowledge, self-management behaviours, self-efficacy, quality of life and psychological outcomes suggest a potential contribution of nurses to comprehensive, patient-centered SLE care. The range of delivery modalities identified, including face-to-face, telephone-based, web-based and telehealth approaches, may facilitate flexible and ongoing support. These findings provide preliminary evidence to inform the development and evaluation of structured nurse-led programmes within multidisciplinary rheumatology care. However, stronger evidence regarding effectiveness, long-term sustainability and cost-effectiveness is needed before widespread implementation can be recommended. Future research should prioritise methodologically rigorous study designs, such as RCTs, with larger and more diverse samples, longer follow-up and standardised outcome measures. Research should also identify which intervention components, timing, intensity and duration are most effective across the disease trajectory and include a broader range of geographical regions, particularly those with a high burden of SLE.

Conclusion

This systematic review suggests that nurse-led interventions may contribute to improvements in several health outcomes among adults living with SLE, particularly disease-related knowledge, self-management behaviours, self-efficacy, quality of life and psychological well-being. While methodological limitations and heterogeneity across studies warrant cautious interpretation, the findings support the potential role of nurse-led interventions in addressing the complex educational, behavioral and psychosocial needs of this population. Further research is needed to strengthen the evidence base and inform the development and implementation of nurse-led interventions in SLE care.

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.