Abstract
Objective
Strategies to Embrace Living with Lupus Fearlessly (SELF) is an online self-management education programme for people with SLE. This mixed-methods study examines SELF’s impact on patient-reported outcomes while assessing implementation outcomes informing feasibility and dissemination.
Methods
A convergent mixed-methods design was used, merging qualitative and quantitative data to enhance interpretation. The Reach, Effectiveness, Adoption, Implementation and Maintenance evaluation framework was used to evaluate programme feasibility and sustainment potential. Participants were recruited from the Georgians Organized Against Lupus (GOAL) cohort (Georgia).
Results
221 adults with SLE from the GOAL cohort enrolled in SELF, completing patient-reported assessments at baseline and 90-day follow-up. 12 participants also completed in-depth interviews exploring the impact of the programme. Certain subgroups including black participants (n=193; 95% CI=−1.59 to −0.04), those with high fatigue levels (n=164; 95% CI=−1.85 to −0.11) and participants living below 100% of the federal poverty level (n=74; 95% CI=−3.44 to −0.18) reported significantly lower disease activity at 90-day follow-up after engaging with SELF. High-fatigue participants improved on multiple measures while the low-fatigue group showed unexpected declines that may reflect baseline confounding. Qualitative findings generally supported quantitative results. One exception was self-efficacy in managing medications, which showed a small but significant decrease (mean reduction=−1.38, 95% CI=−2.50 to −0.26, Cohen’s d=−0.14). However, qualitative data suggested participants became more aware of skill gaps rather than less capable.
Conclusions
SELF showed promising results for reducing disease activity, pain and fatigue among specific subgroups of participants with SLE. Further research should broaden the evaluation of SELF to new geographical settings, broader populations (such as people living with lupus in rural healthcare settings) and further testing for cultural relevance across diverse racial and ethnic groups.
Keywords: Lupus Erythematosus, Systemic; Health-Related Quality Of Life; Patient Reported Outcome Measures
WHAT IS ALREADY KNOWN ON THIS TOPIC.
WHAT THIS STUDY ADDS
This mixed-methods study examines the impact of Strategies to Embrace Living with Lupus Fearlessly (SELF) on PWL, focusing on patient-reported outcomes and user perceptions of the programme’s effects. SELF demonstrated promising results in reducing disease activity and fatigue among specific participant subgroups.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
This study enhances the growing body of evidence supporting the integration of digital SM programmes in lupus care and highlights the SELF intervention’s potential benefits for PWL.
Introduction
Chronic illnesses are a significant burden on individuals and health systems.1 Given that self-management education (SME) is linked to improved outcomes across multiple conditions, guidelines highlight its key role in routine care.2 3 Self-management (SM) can be defined as ‘a dynamic process in which individuals actively manage a chronic illness’.4 Barlow and colleagues define SM as ‘the ability to manage the symptoms, treatment, physical and psychosocial consequences, and lifestyle changes inherent in living with a chronic condition’.5 SLE is a chronic illness that can affect any organ in the body with variable severity and impact.6 The terms ‘systemic lupus erythematosus (SLE)’ and ‘lupus’ are used interchangeably throughout this paper. Women and individuals who are black are more likely to have SLE, and those who are black are more likely to suffer severe outcomes. Black individuals have approximately three times higher incidence and prevalence of lupus than those who are white, experiencing higher mortality rates and dying at younger ages.7,10 Additionally, living at or below 125% of the federal poverty level (FPL) is associated with greater lupus-related organ damage and an increased risk of mortality.11
Due to the unpredictable nature of the disease, SM is frequently a challenge for people with lupus (PWL).12 This is especially so for those experiencing barriers to participation in SME programmes. In some cases, PWL struggle to attend an in-person programme due to a lack of transportation, unexpected personal (eg, work or childcare) or healthcare issues (eg, lupus flares or hospitalisations).13 For those facing difficulties attending in-person programmes or for those who require a more flexible format, online SME programmes may offer promise.
In 2022, the Lupus Foundation of America launched Strategies to Embrace Living with Lupus Fearlessly (SELF), an online SME programme for PWL.14 SELF is based on the Transtheoretical Model of Change15 and provides resources and tools to help PWL manage their symptoms and medications, building self-efficacy around managing their health (see figure 1). Pilot research from SELF found that the programme was feasible and acceptable to a small number of PWL.14 However, additional research is needed to understand the impact of SELF on patient outcomes.
Figure 1. SELF modules and features (adapted from Gilman et al, Lupus Sci Med. 2025;12(2):e001580. CC BY-NC 4.0). LFA, Lupus Foundation of America.
This mixed-methods study explores the impact of SELF on patient-reported outcomes (PROs) among PWL, user perceptions of how the programme impacted them and implementation data on programme feasibility and sustainment. This study seeks to answer two research questions: (1) What can we learn about the effectiveness, acceptability and sustainability of the SELF programme from combining and comparing the qualitative data about participant perceptions of programme impact to the quantitative data collected on patient-reported health outcomes?; and (2) What can we learn about the feasibility and potential sustainability of SELF using implementation outcomes like Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM)?
Methods
A convergent mixed-methods design was used.16 The rationale for collecting both quantitative and qualitative data is to converge and compare the two forms of data, providing a more comprehensive understanding of patterns identified.
Participant recruitment
Participants were recruited from the Georgians Organized Against Lupus (GOAL) cohort.17,19 The GOAL cohort participants regularly complete PROs assessments, enabling comparison of PROs for SELF users to non-SELF users within the GOAL cohort. All participants met four or more of the American College of Rheumatology (ACR) Classification criteria for SLE and had a final diagnosis of SLE by their board-certified rheumatologist. All participants provided informed consent and were advised of the voluntary nature of the study. Participants were given a US$25 gift card as compensation for their time and effort for the post-SELF survey and a US$50 gift card for the qualitative interview.
Quantitative study sample and procedures
GOAL cohort members who elected to participate in SELF were compared with those who did not. Demographic characteristics of the participants were described using means, SD, medians and ranges for continuous variables, as well as frequencies and percentages for categorical variables. Paired t-tests were performed to investigate the effect of the SELF programme by comparing the means of PROs assessed at baseline and after SELF (at 90 days), including measures for anger, anxiety, depression, perceived stress, fatigue, pain, sleep disturbance, social isolation, stigma, disease activity (Systemic Lupus Activity Questionnaire (SLAQ)), physical and mental health, medication management, symptom management, physical function, emotional, informational and instrumental support, and lupus management confidence (see online supplemental file 1 for a full list of measures). PRO measures were expressed as means and SD, differences, 95% CIs and Cohen’s effect size. Subgroup analyses were then performed on race, education, employment status, poverty level and fatigue status. All statistical tests were two-sided with a significance level of <0.05.
Qualitative study sample and procedures
Participants were recruited from the sample of GOAL participants enrolled in SELF. Purposive sampling was used to vary participant characteristics (eg, gender, age, race, disease duration, depression) and SELF utilisation (eg, programme focus choice, number of SELF interactions) salient to the research questions. Data derived from the quantitative study and the programme system were the source of these factors. 235 candidates were grouped into three SELF user categories based on their levels of activity: single-session users (ie, onboarding session only), multisession users who did not complete a 90-day follow-up assessment and multisession SELF users who completed a 90-day follow-up assessment. Four to six candidates in each group were selected and invited via telephone by a GOAL cohort study team member to participate in the qualitative virtual interview. 15 study-interested participants consented by phone and were scheduled for interviews, and 12 participants completed virtual interviews. Three participants had health or personal challenges that prevented them from participating. The qualitative strand used qualitative data analysed inductively (using thematic analysis) and then deductively (according to themes matching the PROs measured in the quantitative strand). Two team members conducted the coding, one coding relevant themes inductively and the other coding deductively, according to the topics measured by PROs (see in-depth interview guides in online supplemental file 2). Disagreement around coding was resolved through discussion between the coders or the broader research team.
Data integration, interpretation and reporting
The qualitative and quantitative data were then merged into a side-by-side joint display.20 This allowed the research team to evaluate quantitative and qualitative results around similar themes, expanding our understanding of how participants may have experienced SELF. The Mixed Methods Reporting in Rehabilitation and Health Sciences checklist21 guided reporting of research activities and results. The RE-AIM evaluation framework (see figure 2) guided implementation-level data collection on Reach, Effectiveness, Adoption, Implementation and Maintenance.22 Integrating RE-AIM and the mixed-methods approach ensured a robust evaluation, capturing real-world programme impact and providing actionable insights for future dissemination.
Figure 2. RE-AIM framework (with permission from Ory, M. G., Altpeter, M., Belza, B., Helduser, J., Zhang, C., & Smith, M. L. (2015). Perceived Utility of the RE-AIM Framework for Health Promotion/Disease Prevention Initiatives for Older Adults: A Case Study from the U.S. Evidence-Based Disease Prevention Initiative). RE-AIM, Reach, Effectiveness, Adoption, Implementation and Maintenance.
Patient and public involvement
The participation of patients throughout our research was critical to our understanding of SELF’s results and to changes made to increase acceptability and programme engagement. We are grateful for their time and insight.
Results
The joint display summarises themes observed (quantitatively and qualitatively) and provides interpretations for each theme. We first report the patient-level results (see tables1 2), followed by implementation outcomes (table 3).
Table 1. Baseline information comparison: SELF participants versus non-participants.
| Characteristics | Category | Information at Baseline Wave† | ||
|---|---|---|---|---|
| SELF participants (n=221) |
GOAL cohort participants who did not participate in SELF (n=546) | P value | ||
| Age (years) | Mean±SD | 47.0±11.4 | 52.8±14.1 | <0.0001 |
| Median (IQR) | 47.9 (36.5–55.6) | 52.7 (42.9–64.0) | ||
| Range | (22.4–75.6) | (22.1–86.9) | ||
| Age group (years), n (%) | 18–34 | 44 (19.9) | 76 (13.9) | <0.0001 |
| 35–54 | 119 (53.8) | 221 (40.5) | ||
| 55+ | 58 (26.2) | 249 (45.6) | ||
| Disease duration (years) | Mean±SD | 16.8±10.0 | 20.0±10.1 | <0.0001 |
| Median (IQR) | 15.0 (10.0–23.0) | 19.2 (11.9–26.3) | ||
| Range | (0.7–52.4) | (0.4–55.4) | ||
| Gender, n (%) | Male | 12 (5.4) | 35 (6.4) | 0.61 |
| Female | 209 (94.6) | 511 (93.6) | ||
| Race, n (%) | Black-AA | 193 (87.3) | 417 (76.4) | 0.0013 |
| White | 22 (10.0) | 115 (21.1) | ||
| Other | 6 (2.7) | 14 (2.6) | ||
| Educational attainment | Mean±SD | 15.1±2.9 | 14.8±3.1 | 0.3 |
| Median (IQR) | 15.0 (13.0–17.0) | 14.0 (12.0–16.0) | ||
| Range | (9.0–23.0) | (1.0–23.0) | ||
| Education level, n (%) | High school or less (≤12) | 51 (23.4) | 151 (27.9) | 0.33 |
| Some college (13–15) | 72 (33.0) | 182 (33.6) | ||
| College or above (≥16) | 95 (43.6) | 208 (38.4) | ||
| Marital status, n (%) | Currently married | 80 (36.2) | 205 (38.0) | 0.11 |
| Previously married | 54 (24.4) | 162 (30.1) | ||
| Never married | 87 (39.4) | 172 (31.9) | ||
| Below 100% FPL, n (%) | No | 140 (65.4) | 356 (69.8) | 0.25 |
| Yes | 74 (34.6) | 154 (30.2) | ||
| Insurance status, n (%) | No insurance | 24 (11.0) | 40 (7.4) | 0.27 |
| Public insurance | 119 (54.3) | 310 (57.2) | ||
| Private insurance | 76 (34.7) | 192 (35.4) | ||
| Current work status, n (%) | Employed | 108 (50.2) | 208 (40.3) | 0.0019 |
| Off labour-force* | 50 (23.3) | 189 (36.6) | ||
| Unemployed | 57 (26.5) | 119 (23.1) | ||
| Disease activity (SLAQ score) | Mean±SD | 13.0±7.4 | 13.5±8.3 | 0.45 |
| Median (IQR) | 12.0 (8.0–18.0) | 13.0 (7.0–19.0) | ||
| Range | (0.0–34.0) | (0.0–39.0) | ||
| Organ damage (BILD score) | Mean±SD | 4.5±3.7 | 5.1±4.1 | 0.05 |
| Median (IQR) | 4.0 (2.0–6.0) | 4.0 (2.0–8.0) | ||
| Range | (0.0–19.0) | (0.0–23.0) | ||
| Suicidality (PHQ), n (%) | No | 194 (89.4) | 512 (94.6) | 0.0099 |
| Yes | 23 (10.6) | 29 (5.4) | ||
Values in bold denote statistical significance (p<0.05).
Off-labour force refers to those who identify as neither employed (working) nor unemployed (not working and seeking work).
Patient-reported outcomes are sent out in ‘waves’ to cohort participants.
AA, African-American; BILD, Brief Index of Lupus Damage; FPL, Federal Poverty Level; GOAL, Georgians Organized Against Lupus; PHQ, Patient-Health Questionnaire; SELF, Strategies to Embrace Living with Lupus Fearlessly; SLAQ, Systemic Lupus Activity Questionnaire.
Table 2. Mixed-methods joint display.
| Theme | Quantitative | Qualitative | Interpretation |
|---|---|---|---|
| Some subgroups of SELF participants had lower (self-perceived) disease activity (as measured by SLAQ) after participating in the programme. | Compared with baseline, black participants, participants living below 100% FPL and SELF participants with high-fatigue at baseline reported significantly lower disease activity (SLAQ). | Oh, it does. Because it was days that it, you know, when I was forgetting to take my medicine, it was days that I could barely get out of the bed. And now I, I mean, I'm, I don't, I get out the bed and I, I can do things. How to come out and talk about what’s going on with the lupus and management skills. How to manage symptoms when they arise. |
SELF participation may have helped reduce disease activity for black participants, those below 100% FPL and those experiencing high-fatigue. |
| Some subgroups of SELF participants experienced lower pain intensity after participating in the programme. | A significant difference in pain intensity (from baseline) was found for SELF participants living below 100% FPL, participants who had some college education or less, and participants with high-fatigue. | Yeah, {having less pain now means [I am] able to do more everyday activities that you maybe couldn’t do before} like folding my clothes, washing my clothes, putting on my clothes. Brushing my hair, doing my hair. Bathing. Stuff like that. Putting on my shoes. I didn’t do no exercises at all…Until SELF telling me about the different styles and the different ways and why it was good for me to do exercise by me having lupus and by me having joint pain. |
SELF participation may have helped reduce pain intensity for programme participants who were below 100% FPL, participants with some college education or lower and participants experiencing high-fatigue. |
| We observed counter-intuitive quantitative results for self-efficacy in medication management among several groups. Qualitative data suggested these results may be more nuanced than described quantitatively, potentially shedding light on participants’ skill gaps (which may ultimately have positive results in terms of building SM skills). | Mean PROMIS T-scores for self-efficacy in managing medications decreased among SELF participants (mean reduction=−1.38), 95% CI −2.50 to −0.26, p<0.05, Cohen’s d=−0.14). Similar findings emerged for all racial and ethnic groups, those above 100% FPL, those with a college degree or more education, those who were employed and those with low fatigue. | Using the medication tracker is probably the reason why all my numbers are kind of stable. It did shed some light on things that I wasn’t necessarily thinking about in terms of dealing with lupus and managing it. When it comes to the medication, I think by me interacting and focusing more on that, when I ended up setting up… What do you call it? A backup person or a support person to actually say… “Hey, stop what you’re doing. I’ll take over, go and take the medication.” |
Quantitative results show a drop in self-efficacy for managing medications. However, qualitative data highlights that the medication tracker raised awareness of areas for improvement and prompted participants to take action. Interacting with SELF likely revealed previously unrecognised gaps, as 94% of users (208/221) chose modules other than medication management, which still shed light on their skill gaps. While these modules were not specifically about medication management, they may have shed light on skill gaps that participants were not previously aware of. |
| While participants in the high-fatigue subgroup improved significantly on several measures, those in the low-fatigue group saw some unexpected negative outcomes. | Participants in the high-fatigue subgroup (n=164) improved significantly in pain intensity, disease activity and perceived stress, and showed significant improvement in their answers to question 1 of the global health assessment. Among those with low fatigue, anxiety, depression and social isolation all increased significantly compared with baseline. Those with low fatigue also saw significant decreases in physical health scores, managing medications and managing symptoms scores. |
My fatigue level has gotten better. A lot better. I pretty much gained a lot more confidence and I can, and I’m not as depressed about having lupus as I was. I feel that I can manage my lupus a lot better now. I’m going through a divorce, so it’s kind of up and down… It’s a lot of life changes. I’m kind of like, I’m not going to say homeless because I’m not going to claim that, but it’s just a lot of life changes and I’m trying to manage it the best I can. |
Other confounders, such as acute financial or emotional problems, may have influenced some of the results observed in the low-fatigue group. |
FPL, federal poverty level; PROMIS, Patient-Reported Outcomes Measurement Information System; SELF, Strategies to Embrace Living with Lupus Fearlessly; SLAQ, Systemic Lupus Activity Questionnaire; SM, self-management.
Table 3. RE-AIM results.
| Dimension | Definition | SELF results |
|---|---|---|
| Reach | Number, percentage and representativeness of those who participated in the intervention |
|
| Effectiveness | Intervention effects on outcomes |
|
| Adoption | Number, percentage and representativeness of participating settings and providers |
|
| Implementation | The extent to which the intervention was consistently implemented |
|
| Maintenance | The extent to which an intervention becomes part of routine practices and maintains effectiveness. |
|
Adapted from RE-AIM. (n.d.). RE-AIM: A framework for evaluating health interventions. Retrieved (7 November 2024), from https://re-aim.org/.
BILD, Brief Index of Lupus Damage; PHQ-9, Patient Health Questionnaire-9; PROM, Patient-Reported Outcome Measure; SELF, Strategies to Embrace Living with Lupus Fearlessly.
Characteristics of self participants
Within the GOAL cohort, 589 participants, who had completed the GOAL baseline survey between November 2021 and August 2022, were invited to participate. 221 participants consented to participate in SELF. The sample was predominantly female (94.6%) and Black (87.3%), with a mean age of 47 years and an average disease duration of nearly 17 years. Most participants were in the 35–54 age range (53.8%). About 23% had a high school education or less, 33% had some college or less (but no college degree) and 44% had a college degree or higher. Roughly one-third (34.6%) lived below the FPL, and the majority had public insurance (54.3%).
SELF participants differed from the GOAL cohort on some key characteristics (see table 1). On average, SELF participants were younger; had a shorter disease duration and lower organ damage (as measured by the Brief Index of Lupus Damage (BILD)) scores; were more likely to work full/part-time; and were more likely to respond affirmatively to the PHQ9 question about suicidal ideation than participants who did not participate in SELF. Per one participant, “Diagnosed in May 2019…I was looking for something that would help me have a better understanding of what lupus was and how to better manage the disease.” On the other hand, some participants who had been living with SLE for longer periods also found the programme helpful: “Even though I had lupus for over 10 years, it’s still so much I don’t know.”
The flexibility of SELF may also have been attractive for participants who worked full or part-time: “I guess the best part of the program is that you are able to do the surveys on your own and you don’t even have to go into a facility or building or anything. It just was right there online for you to complete.” However, for some participants, the benefits of SELF may also have been disrupted by barriers to engagement: “I can log on whenever, but also, when my life gets busy, I kind of forget or I forgot to go back and engage in all the interactive sessions.”
General health
While SELF participants’ responses to question 1 of the PROMIS Global Health scale (Patient-Reported Outcomes Measurement System: a general self-assessment of perceived health) were slightly improved at follow-up (mean difference=0.09, 95% CI 0.00 to 0.17, p=0.04), the CI’s inclusion of 0 and negligible effect size (Cohen’s d=−0.11) suggests weak to no effect. However, SELF users below 100% FPL reported higher scores on general health after engaging in SELF (mean difference=0.18, 95% CI 0.02 to 0.34, p=0.03, Cohen’s d=−0.23). Among participants with some college education or less, those who participated in SELF also reported higher social activity roles at follow-up, as measured by question 9 of the Global Health Assessment (mean difference=0.20, 95% CI 0.04 to 0.37, p=0.02, Cohen’s d=−0.22). SELF participants with some college education also reported a slight decline in physical health (mean reduction=−1.24, 95% CI −0.16 to −2.32, p<0.03, Cohen’s d=−0.15).
Qualitative data supported improvement in perceptions of general health for participants: “I’m sure it has [had an impact] because there are times when my health was so bad that I would think about some of the things to do, not necessarily having SELF at the forefront, but it was something that would come to me when I would be in those dark times, so to speak.” On the other hand, improvements in health may only have occurred when participants experienced a flare or remembered to use SELF: “…at certain parts of the year, it’s a real busy travel year. So, I don’t really engage in it as needed, but I do make mindful note that it’s available when I do.”
Disease activity
There was no significant change in disease activity as measured by the SLAQ, a validated PRO for monitoring lupus disease activity23 from baseline to follow-up (mean difference=−0.59, 95% CI −1.30 to 0.12; Cohen’s d=−0.081; p=0.10), however there were significant improvements among certain subgroups. Compared with baseline, black participants in the SELF programme (n=193) reported significantly lower disease activity (mean difference=−0.82, 95% CI −1.59 to −0.04, p=0.04, Cohen’s d=−0.11) at 90-day follow-up. Per one participant: “I got sick and tired of taking all this medication, but SELF was telling me how I can manage it and how I can not look at how many medicines they give me, but…how it’s helping me.” SELF participants living below 100% FPL (n=74) also reported significantly lower disease activity (mean=13.1 SD ± 7.6) compared with baseline (mean=14.9, SD±8.3, 95% CI −3.44 to −0.18, p=0.03, Cohen’s d=−0.23). One participant describes how SELF helped her with medication adherence, “… it was days that it, you know, when I was forgetting to take my medicine, it was days that I could barely get out of the bed. And now I, I mean, I’m, I don’t, I get out the bed and I, I can do things”. Among SELF participants who had high-fatigue at baseline (n=164), there was also a significant reduction in disease activity (SLAQ) (mean difference=−0.98, 95% CI −1.85 to −0.11, p=0.03, Cohen’s d=−0.14). In the words of one participant: “My fatigue level has gotten better. A lot better.” Another participant described some strategies learnt through SELF: “How to come out and talk about what’s going on with the lupus and management skills. How to manage symptoms when they arise.”
Pain intensity
A significant difference in pain intensity (as measured by the PROMIS measure of pain intensity) was found for SELF participants living below 100% FPL from baseline (mean=57.5, SD±11.8) to follow-up (mean=60.5, SD±13.5, 95% CI −5.91 to −0.12, p=0.04, Cohen’s d=−0.25). Among participants with some college education or less (n=123), those who participated in SELF also reported significantly lower pain intensity at follow-up (mean difference=−2.39, 95% CI −4.40 to −0.37, p=0.02, Cohen’s d=−0.21). As one participant stated, “Yeah, having less pain now means [I am] able to do more everyday activities like folding my clothes, washing my clothes, putting on my clothes. Brushing my hair, doing my hair. Bathing. Stuff like that. Putting on my shoes.” In addition, SELF participants with high-fatigue reported significantly lower pain intensity at follow-up (mean difference from baseline=−2.02, 95% CI −3.65 to −0.39, p=0.02, Cohen’s d=−0.19). Participants commented on the positive effect that increased exercise had on their pain: “I didn’t do no exercises at all…Until SELF telling me about the different styles and the different ways and why it was good for me to do exercise by me having lupus and by me having joint pain.”
Conflicting results
Managing medications
We observed some conflicting results for self-efficacy in managing medications among SELF participants, as well as specific subgroups who participated in SELF, including those who were black, those above 100% FPL, those with some college education or above, those who were employed, and those with low fatigue. Though the effect size was not clinically meaningful in the overall sample, mean PROMIS T-scores for self-efficacy in managing medications decreased among SELF participants (mean reduction=−1.38, 95% CI −2.50 to −0.26, p=0.02, Cohen’s d=−0.14), compared with baseline.
Findings in high and low-fatigue groups
Participants in the high-fatigue subgroup (n=164) improved significantly in pain intensity (mean reduction, −2.02, 95% CI −2.65 to −0.39, p≤0.02, Cohen’s d=−0.19); disease activity (mean reduction=−0.98, 95% CI −1.85 to −0.11, p≤0.03, Cohen’s d=−0.14); perceived stress (mean reduction=−1.22, 95% CI −2.18 to −0.26, p=0.01, Cohen’s d=−0.15); and self-reported general health (mean improvement=2.44, 95% CI 0.01 to 0.21, p≤0.03, Cohen’s d=0.15)). While these improvements were statistically significant, the effect size was small. Among those with low fatigue (n=50), anxiety (mean increase=2.71, 95% CI 0.29 to 5.13, p≤0.03, Cohen’s d=0.37); depression (mean increase=1.8, 95% CI 0.11 to 3.51, p=0.04, Cohen’s d=0.27); and social isolation (mean increase=1.89; 95% CI 0.16 to 3.63, p=0.03, Cohen’s d=0.21) all increased significantly compared with baseline. Those with low fatigue also saw significant decreases in physical health scores (mean reduction=−1.58, 95% CI −2.88 to −0.27, p=0.02, Cohen’s d=−0.25); managing medications (mean reduction=−2.11, 95% CI −4.02 to −0.19, p=0.03, Cohen’s d=−0.29); and managing symptoms scores (mean reduction=−2.04, 95% CI −3.96 to −0.12, p=0.04, Cohen’s d=−0.31). This unexpected outcome requires further exploration with this specific group, preferably with a higher sample size given that the low fatigue group is relatively small (n=56). Qualitatively, we did not observe any comments that SELF increased the likelihood of any of these findings. However, participants commented on other hardships that might have influenced these findings: “I’m kind of like, I’m not going to say homeless because I’m not going to claim that, but it’s just a lot of life changes, and I’m trying to manage it the best I can.”
On the other hand, one participant did state that SELF helped their mental status: “And a lot of times…when I would get the email for me to answer the SELF portion, I would be in somewhat of a state of depression, you would say…And when I would do it, it reassured me. And it really did, it made me feel good”. Overall, fatigue level did not substantially impact engagement with the SELF programme: Login frequency did not differ significantly between fatigue groups (p=0.56). Among high fatigue participants, 25.0% (n=14) logged in more than eight times, compared with 23.2% (n=38) of low fatigue participants. A smaller proportion of high-fatigue participants logged in only once (8.9%, n=5) compared with low fatigue participants (16.5%, n=27).
Implementation outcomes
Implementation outcomes reported were RE-AIM (see table 3). On the whole, implementation outcomes were positive, with 38% reach, promising quantitative and qualitative patient-level results, and 221 (out of a goal of 199) completed post-SELF surveys. Content was consistently implemented along with adaptations to make the programme more accessible (like additional log-in reminders and the development of a companion app after the study’s conclusion).
Discussion
This mixed-methods study evaluated SELF’s impact on PWL using PROs and user perceptions of how the programme impacted them, as well as implementation outcomes including RE-AIM. We gathered data and suggestions for future improvement by converging and comparing qualitative data about participant perceptions with quantitative data on patient-reported health outcomes, as well as implementation-level data.
Our findings indicated that SELF users generally were younger and more likely to be employed than non-SELF users. On the other hand, findings also indicate that those who have had lupus for a longer period of time also found the programme to be beneficial, challenging the assumption that SME programmes are only for those who are newly diagnosed. Although SELF participants were younger, on average, than the overall GOAL cohort, participants who had been living with SLE for longer also found the programme helpful. As repetition is key in adult learning—being repeatedly exposed (in different ways) to SM principles is critical.
Given SELF’s digital format, this programme may be more accessible to participants who may require a more flexible learning structure. However, the digital programme format may necessitate more reminders and re-engagement strategies. Providing the programme as an app may offer additional touchpoints and convenience for future participants. Importantly, participation in SELF requires computer and internet access, as well as the ability to read and complete online forms, which may limit access for some individuals.
Overall, SELF seemed easier for participants to access compared with an in-person programme. Still, this additional accessibility may have also encouraged participants to take it for granted when not experiencing flares. Research in other fields finds that engagement in health programmes is often influenced by the perceived benefit of the intervention and whether users perceive a need for the innovation, with those perceiving less need engaging less frequently.24 25 Given that the study follow-up was 90 days, we may have missed periods of re-engagement prompted by flares or other perceived needs. Another possibility is that if SELF benefits PWL, they may engage less, given a lower perceived need for SELF. However, they may re-engage in the future, during a flare or other need. This is true, however, only if SELF continues to provide reminders for re-engagement. Several participants suggested an app might be helpful, given push notifications with reminders and motivational messaging: “… the thing that kept me I think from using it more was that it was a website to go to as opposed to an app that would just pop up my phone or something like that…” The SELF programme has since developed a companion app.26 Future evaluations of this may provide helpful information for improvements and features.
Adverse social determinants of health, such as low socio-economic status, limited educational attainment and racial/ethnic stigmatisation, are linked to more severe SLE outcomes, including increased morbidity and mortality. These factors, notably lower income, lower educational attainment and anti-black racism, significantly worsen both disease progression and psychosocial outcomes in patients with SLE.7 27 It is encouraging that SELF outcomes were promising for those who were black, who had some college or less, and those below 100% FPL: arguably, those who would benefit the most from SELF seem to be getting the highest benefit. This is also true for those with high fatigue who saw improved pain intensity, self-reported disease activity, perceived stress and general health. On the other hand, some of the improvements noted for disease activity were approximately one point on SLAQ and therefore likely did not constitute clinically meaningful differences, even if they were statistically significant.
Negative and unexpected findings were also observed for managing medications among SELF participants and specific subgroups, including those who were black, living above 100% FPL and those with some college education and above. While quantitative results show drops in self-efficacy for managing medications, qualitative results highlight the medication tracker’s impact in raising awareness on medication management skills. Interacting with SELF potentially highlighted areas for improvement that participants had not previously considered. Regarding learning new skills, Bandura states that self-efficacy is a continuously changing cognitive process in which individuals self-evaluate their ability to perform new tasks.28 Participant self-efficacy scores may have dropped if they realised their learning curve for managing medications was steeper than initially assessed. Qualitative data from participants support this: “When it comes to the medication, I think by me interacting and focusing more on that, when I ended up setting up… a support person to actually say… ‘Hey, stop what you’re doing. I’ll take over, go and take the medication’.” Another participant noted how SELF highlighted opportunities for improvement: “[it was] helpful in a lot of ways also because it helped me improve on my medicine…Sometimes I forget and it helped me…”
The RE-AIM framework generated several insights to improve SELF’s effectiveness and its potential for dissemination. These insights highlighted the potential usefulness of a SELF app and the importance of more reminders for participants. We also learnt that it is important to allow for participants to take breaks and later revisit the programme when they need to do so. In future studies, it may also be useful to conduct further user testing, assessing each module in greater detail. It may be especially important to evaluate the medication management module, which only 6% of the study population elected to engage with despite the importance of medication management for lupus SM. Future studies with higher sample sizes and longer follow-up periods should also evaluate whether participant demographics and outcomes differed based on rates of module completion.
This study has several limitations. The internal validity of the quantitative results may be affected by the risk of bias as the study lacked randomisation and a control group. Key differences may emerge in other settings or populations, given that the study was conducted in Metro-Atlanta, Georgia. Participants were not asked about prior participation in other SME programmes, in part because SELF could complement those. This, however, may have introduced some bias. The representativeness of qualitative data for all PWL may also be limited, given small sample sizes and the subjective nature of the data. Additionally, this cohort may represent a more motivated set of participants, given their willingness to enrol in the overall GOAL cohort and reimbursement for their time.
Conclusion
This study evaluated the impact of SELF on PWL using a combination of PROs, user perceptions of how the programme impacted them and data to assess implementation outcomes. PROs were especially promising for those PWL who are from groups vulnerable to increased morbidity and mortality, highlighting the benefit of SELF for those who need it most. The programme’s digital structure resulted in more ease of access for participants (via web-browsers on their phone or computer), but frequent reminders are needed to re-engage participants. Next steps include more systematic evaluation of each programme module, evaluating SELF from the perspective of healthcare providers and assessing how the app and online programme could be integrated with patient care for increased engagement and adoption.
Supplementary material
Acknowledgements
The authors extend their gratitude to the GOAL cohort for contributing their valuable time and perspectives. The authors would also like to thank Kamil Barbour and Kurt Greenlund for their support. This research has been previously presented at ACR Convergence 2024 in Washington, DC.
Footnotes
Funding: This study was supported by the Centers for Disease Control and Prevention of the US Department of Health and Human Services (HHS) as part of a financial assistance award (U48 DP006377-03S8) totaling US$500 000 over 2 years, with 100% funded by CDC/HHS. The GOAL cohort is supported by CDC U01 DP006698. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS or the US Government.
Provenance and peer review: Not commissioned; externally peer reviewed.
Patient consent for publication: Not applicable.
Ethics approval: The Institutional Review Board of Emory University and the Grady Office of Research Administration determined that this evaluation protocol was exempt from IRB review (ID#00003735) under CFR 46.104(d)(2ii) and within the category of behavioural interventions.
Data availability free text: De-identified data or detailed summaries of data are available upon reasonable request.
Patient and public involvement: Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.
Data availability statement
Data are available upon reasonable request.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
Data are available upon reasonable request.