Discussion
This is the first study in a cohort of people with SLE to investigate the association of potentially stressful life events with perceived stress, whether psychosocial factors affect perceived stress, and whether these relationships vary by prior trauma exposure. We found that the number of recent stressful life events was associated with greater perceived stress only among individuals with trauma history. Regardless of trauma history and life events, positive psychosocial factors were associated with lower perceived stress while social isolation was associated with greater perceived stress.
Although links between heightened perceived stress and worse disease activity, patient-reported outcomes and mental health in SLE are well documented,5 7 30 31 the role of life events in influencing perceived stress has received little attention. In the full sample, we found that a greater number of recent stressful life events was independently associated with perceived stress, consistent with findings in other health conditions. For example, a study of postpartum women with >3 recent life stressors had perceived stress that was 3 times greater compared with women with <3 stressors after adjustment for demographic factors.32 In our stratified analyses, however, this association was seen only for individuals with a trauma history. A study of 176 adults found that a higher number of ACEs correlated with lower well-being and increased stressful events in adulthood; those with more positive psychosocial factors exhibited lower stress and greater well-being.33 Similarly, in the present study, individuals with trauma history reported both a greater number of life events and greater perceived stress. It was not possible to determine if the association was due to greater exposure to stressful events or greater vulnerability to those events. People with trauma history can develop habituation to stress that is deleterious over time because of a blunted stress-response or lack of ability to recover from stress.34 Trauma may predispose a person to less favourable social situations which then could increase exposures to more frequent stressful life events or re-traumatisation.33 Regardless, the association of number of recent stressful life events and trauma history suggests that it may be possible to identify individuals who are more vulnerable to high levels of perceived stress and may benefit from interventions designed to promote positive coping with adversity.
We hypothesised that positive psychosocial factors would mitigate the effect of life events on stress; however, our results did not show meaningful change in the parameter estimates. While there was a significant association of psychosocial factors with stressful events in all groups, it did not change the effects of the stressful events, which suggests that some other coping mechanism or unmeasured factor exists in this role.
We found that positive and negative psychosocial factors were associated with perceived stress. Our finding aligned with links between perceived stress and psychosocial influences shown in individuals with sickle cell disease (SCD). Fewer positive and more negative psychosocial influences—worse self-efficacy, less social support—have contributed to worse perceived stress and worse symptoms for people living with SCD.35 36 In the present study, self-efficacy had the most robust association with perceived stress among the positive psychosocial factors. In people with SLE, greater self-efficacy has been linked to improved SLE disease activity and overall quality of life.30 37 In contrast, lower self-efficacy has been associated with health disparities in SLE organ damage, difficulties with medication adherence and lower motivation for self-care.38–40 In SLE, greater self-efficacy may lead to lower perceived stress through confidence in self-management, such as ability to manage symptoms, or means to cope with SLE disease unpredictability. Importantly, interventions have improved self-management and self-efficacy in SLE.41–43
Resilience aligns with positive coping behaviours in SLE.44 Resilience also fortifies social interactions and positive factors in individuals with rheumatoid arthritis.45 While deficits in resilience may negatively affect health, some individuals with immature coping patterns at a young age can learn to harness motivation, autonomy and external social support to overcome adversity.46 Refining and testing evidence-based resilience interventions in SLE are important next steps to reduce negative effects of perceived stress.
A key argument in trauma history and differential appraisals of trauma is that ‘traumatic events alone are insufficient to produce enduring stress and debility. Rather, the disorder is the product of the interplay of environmental stressors and psychosocial factors’.47 This argument is founded on separate behavioural and cognitive theories of situational control. Behavioural control is where an individual overcomes traumatisation by avoidance—like choosing not to engage with a negative person. Cognitive control is when an individual believes that they can successfully manage a threat—like taking a class on self-defence and feeling confident that they can protect themselves if they encounter a potentially dangerous situation. Cognitive control theory has relevance to our findings. While participants with and without trauma history reported no significant difference in resilience, those with trauma history had lower self-efficacy and emotional support than those without trauma. However, when examined individually, resilience was associated with lower perceived stress, even among those with a history of trauma. Strengthening cognitive control by enhancing positive psychosocial factors is a promising step in managing responses to traumatic experiences and merits study in individuals with SLE, since behaviour changes towards self-management could address links between perceived stress and SLE outcomes such as disease activity.
Patients with SLE often report that the unpredictability of SLE contributes to a perceived lack of control of health. This uncertainty may erode confidence and accentuate symptoms of anxiety and depression. Self-management programmes that facilitate a sustained switch from behavioural control (avoidance) to cognitive control (self-efficacy) may provide one approach to lessen perceived stress and could foster post-traumatic growth for people with SLE who have experienced trauma. Understanding how individuals exposed to childhood trauma can foster and sustain positive coping skills through the lifespan may help guide self-management interventions for those with trauma in adulthood.
Our previous work associated trauma history and perceived stress with SLE outcomes. We now establish a connection between stress perceptions and current stress in the context of historical stress and psychosocial influences. Taken together, adaptations to perceived stress may be possible with fortified psychosocial influences which in turn may affect outcomes such as disease activity, fatigue and flares—even among individuals with trauma exposures.
As research uncovers and strengthens relationships in the stress-health pathway among individuals with SLE, translating this work to clinical settings must keep pace. To ask about trauma history, coping strategies and psychosocial resources during encounters may inform clinicians how to provide more targeted interventions given links between psychosocial adaptation to uncontrollable stress and physical and mental health.48 Yet there are unmet needs to promote environments where post-traumatic growth can occur.49 Considerations include support for clinical care teams to recognise trauma and stressors, as well as access to experts in mental and social health services who can help address these factors and strengthen psychosocial resources for individuals with SLE.
Limitations
There are limitations to this study. We were underpowered to stratify within each trauma group by depression; however, we did adjust for depression. As expected, depression was associated with higher stress scores. Trauma can worsen mental health in a dose-response pattern in the general population50 51 and in those with SLE.2 Year 5 data collection coincided with the COVID-19 pandemic, a global stressful event that challenged stabilising factors of health, workplace, family and socialisation with disproportionate effects on some persons with SLE.52 Since such events can retrigger post-traumatic stress and amplify the stress response in those with a history of trauma, it is possible that effects seen among patients with SLE were overestimated. We used cross-sectional data which do not permit conclusions about directionality; those with high perceived stress could also be susceptible to increased life trauma. We do not have measures of the positive psychosocial factors from an earlier point in time. It is possible that the individuals in our study with childhood trauma who interacted with the medical community to participate in a longitudinal cohort study have developed skills that have facilitated positive post-traumatic adaptation. If this is the case, the impact of interventions to improve coping and self-management skills may be even greater among individuals without such adaptation. This sample derived from a population of individuals with median age of 50 years, well-controlled longstanding SLE and strong social support. Studies among individuals who are younger, have more volatile disease activity with recent diagnosis and greater challenges with social determinants of health are warranted, as our findings may be underestimated for these groups.
Our measure of recent stressful events is a count of the number of recent life events and may be an oversimplification of the global experience of recent life stressors. The psychosocial factors appear to affect the evaluations of stress caused by the events, although the number of events continues to play a role in perceived stress for individuals with a history of trauma. In other words, for people without a history of trauma, the cumulative load of potentially stressful events was not a critical determinant of perceived stress. In contrast, people who have a history of trauma may have less ability to manage the cumulative effects of these events. Both groups, however, appear to be able to reap the benefits of positive psychosocial factors and lessening of negative factors. These findings suggest an update to our theoretical model such that the effects of psychosocial factors act directly on perceived stress rather than modifying the relationship between the number of life events and perceived stress.