Cardiovascular disease (CVD) remains a leading cause of morbidity and mortality in systemic lupus erythematosus (SLE), yet control of modifiable risks is uneven. Holistic and standardised strategies integrating lifestyle, clinical, biological and social dimensions are needed.1 Building on this, we conducted a qualitative study to identify barriers and facilitators to cardiovascular risk control from patient and clinician perspectives.

We undertook semi-structured interviews with 12 patients and 5 clinicians, until data saturation. Transcripts underwent TDF- and COM-B-guided thematic analysis.2,3 This letter reports a directed subanalysis of a broader qualitative project on living with SLE. For this subanalysis, we retained only content explicitly related to cardiovascular prevention/management and analysed it accordingly. We focused on the following core domains with patients: access and care pathways; medication routines and memory aids; emotional load and outlook; role clarity and coordination; and knowledge – skills for lifestyle change; clinicians were additionally asked about task distribution across specialties, system-level barriers/facilitators, and resource needs. Patients were predominantly women (9/12); median age 46 years (25–57) and disease duration 3.5 years (1–39). Findings clustered into five themes within COM-B framework (Fig. 1).

Fig. 1.

COM-B and TDF framework for cardiovascular risk control in SLE. Five themed panels surround a central title; bullets summarise barriers and facilitators identified in TDF-coded interviews. Abbreviations: SLE, systemic lupus erythematosus; COM-B, capability–opportunity–motivation–behaviour model; TDF, theoretical domains framework.

Patients reported difficulty navigating health services and care delays. Some felt overwhelmed by the sheer number of appointments and the logistical challenges of attending them: “At first it was overwhelming because it was so hard for me to go places…I needed someone with me, and I’d be out of breath after a few steps…” (Patient) Physical limitations, travel distance, and long waits to see specialists were common barriers. Both groups noted that fragmented pathways impeded consistent risk factor monitoring. Coordinated care was viewed as a key facilitator.

Many patients reported difficulty adhering to preventive CVD medicines due to forgetfulness or lack of routine. One patient explained that “…If I don’t have a set routine, I might end up forgetting to take my pills…” Simple memory aids and establishing daily medication habits were identified as key facilitators for adherence. Clinicians echoed that adherence is challenging when the benefits are not immediately tangible: treating hypertension or hyperlipidaemia is a “long-term investment” where patients “…do not feel a short-term benefit from treating their cholesterol or blood pressure…” (Clinician), which can undermine motivation. Highlighting near-term gains and involving family support were strategies mentioned to improve adherence.

SLE psychological burden and its complications can influence cardiovascular risk factor management. Several patients described feelings of fear, distress or even fatalism about their health: “…why me?’ I thought…I felt angry and sad about having this disease” (Patient). Such emotional distress sometimes led to denial or avoidance (for example, ignoring diet and exercise advice). Conversely, a few patients noted that adopting a positive outlook and stress-coping strategies helped them engage in healthier behaviours. Emotional support, via counselling, patient support groups, or empathetic communication, was highlighted as an important facilitator. Clinicians admitted that the “psycho-affective sphere” of SLE is often under-addressed in routine visits, even though anxiety or depression may be undermining patients’ capacity to focus on lifestyle changes.

Both groups identified uncertainty about “who is responsible” for SLE-CVD prevention as a barrier. Patients often receive care from multiple providers and can be confused about whether the internist/rheumatologist, the general practitioner, or another specialist should manage their hypertension, hyperlipidaemia or weight control. One patient remarked: “…my specialist takes care of the tests and my lupus, but there's a gap in who looks after my overall health…” Overlapping or neglected responsibilities between providers can result in important risk factors slipping through the cracks. Clear role delineation and better communication between healthcare professionals were seen as critical facilitators. Clinicians also noted that involving allied health professionals (nurses, dietitians) in care coordination could provide patients with more consistent follow-up on lifestyle and preventive measures.

Gaps in patient knowledge and self-management skills emerged as a prominent theme. Several patients were unaware of the link between SLE and CVD, or did not recall receiving specific counselling on diet, exercise, and smoking cessation. As one patient admitted: “…honestly, I haven’t changed my diet or exercise habits at all…” Such responses reflected both a lack of awareness (knowledge) and a lack of practical skills or confidence to implement changes (capability). On the other hand, patients who had received clear advice and coaching on lifestyle (for example, a referral to a nutritionist or supervised exercise programme) reported feeling more capable of making and sustaining changes. Both patients and clinicians advocated for stronger educational interventions, delivering tailored information about why risk factors control matters in SLE, and how to achieve it in daily life. Enhancing patients’ health literacy and self-efficacy was seen as a key facilitator that could empower sustained lifestyle modification.

Our study limitations include a single-region sample, self-report and translated quotations. As a pilot study, findings generate hypotheses for multicentre mixed-methods work and COM-B/TDF-informed interventions targeting barriers and facilitators to improve SLE-CVD risk management.