P80 Value of the clinical nurse specialist role in the care of patients with systemic lupus erythematosus: the patient experience

Abstract Background Systemic lupus erythematosus (SLE) is a complex, multi-system, chronic disease that is predominantly managed by rheumatologists in a clinical setting. Clinical Nurse Specialist (CNS) access and support for patients can be variable and mostly lacking. The value of the CNS role in supporting patients with SLE has not previously been explored in depth from the patient’s perspective. This service evaluation investigates the role of the SLE CNS in supporting patients with SLE, with the aim to further develop the CNS role in SLE care to support patients locally in North Wales. Methods Seven SLE participants, who had access to a dedicated SLE CNS, were selected from connective tissue disease clinics at a district general hospital. The age range was 33-69 years with a disease duration from 4-20 years. Participants took part in a one to one semi-structured interview using open ended questions. Interviews were digitally recorded, transcribed verbatim, and analysed using thematic analysis. Results The analysis of the interviews highlighted the value of a specific SLE CNS role to SLE patients. Overall, responses were positive with participants feeling reassured knowing they could contact the CNS for support via the telephone nurse advice line during flares of disease activity: “It’s like a lifeline”. Owing to the complex nature of SLE, participants valued having a nurse to monitor their condition, enabling them to feel supported between routine appointments: “I think of the nurse as my safety blanket”. Validation of symptoms led participants to feel in control, as they appreciated having a nurse to discuss their concerns with, who took the time to listen: “It’s about not putting it all down to lupus”. All respondents valued receiving information about SLE from the CNS, who was perceived as having specialist knowledge of SLE: “The specialist nurse knows the ins and outs”. This expert knowledge of SLE was fundamental to participants at diagnosis and throughout their disease trajectory, as those without support from a CNS soon after diagnosis felt isolated and ill informed: “I didn't even know what I had”. The majority of participants reported a lack of empathy and understanding of SLE among primary care specialists, and experiences of misdiagnosis were not uncommon: ‘“They said I had scarlet fever, psoriasis and various other things”. Conclusion Though the number of participants was small, the study has revealed that the SLE CNS provides an important