Doctor-patient communication in Systemic Lupus Erythematosus: Insights from the LupusVoice study

Good quality doctor-patient interactions foster patient involvement and increase trust, treatment satisfaction and adherence. However, what constitutes optimal doctor-patient communication in systemic lupus erythematosus (SLE) is unclear. This study aimed to identify gaps in the communication between clinicians and SLE patients. The LupusVoice Study was a qualitative, descriptive, observational, multicenter, and cross-sectional ethnographic study including the experiences of 40 patients with SLE, and the perceptions of 9 SLE specialized clinicians, from six different hospitals in Spain, collected through interviews and analyzed through thematic analysis. This study identified gaps in doctor-patient communication in four areas: diagnosis, pharmacological treatment, non-pharmacological strategies, and pregnancy. Patients were not satisfied with the communication of the diagnosis, aiming to receive more information about SLE and its impact on quality of life in a realistic and tactful manner. Suboptimal communication was mainly explained by clinicians’ lack of time. Regarding pharmacological treatment, patients wanted to have known more about the side-effects, not reported by clinicians due to time constraints and fear of non-adherence. Concerning non-pharmacological measures, doctors did not provide information about diet due to skepticism about its benefits and did not usually address psychological problems. Regarding pregnancy, while patients missed earlier and more detailed family planning counselling, clinicians only offered it when women manifested their desire to conceive. To improve SLE patients’ experiences, efforts should be made towards increasing awareness of communication gaps among HCPs while supporting them in communication delivery with the figure of a specialized nurse. • Summary Highlights: Significance and Innovations. • Optimal doctor-patient communication has the potential to improve patient outcomes in patients with rheumatic diseases, but evidence on optimal doctor-patient communication in systemic lupus erythematosus is scarce. • This is the first study that integrated patients’ and clinicians’ perspectives to identify gaps in the communication between doctors and SLE patients. • The main gaps identified in clinician-patient communication are related to diagnosis, pharmacological treatment, non-pharmacological strategies and pregnancy. • Clinicians recognized that lack of time, resources, communication skills, and awareness of patients’ plans as the main cause for communication gaps. • Effective strategies to improve doctor-patient communication in SLE should target both the individual and systemic levels.