AB1433-HPR Improving nursing care in patients with systemic lupus erythematosus
Authors: L Gossens, M. Limper, G. Kiers, E. Molendijk, K.V.D. Brande, P. Mosterman, J. Ammerlaan
Journal: Annals of the Rheumatic Diseases (2018)

<h3>Background</h3> Systematic Lupus Erythematosus (SLE) is a systemic inflammatory autoimmune disease with a heterogeneous presentation in which almost every organ can be affected<sup>1</sup>. SLE patients experience a lower health-related quality of life, due to variation of disease severity over time, arthritis, arthralgia, skin abnormalities, myalgia and general fatigue<sup>2</sup>. The treatment and support of patients with SLE is carried out by a multidisciplinary team, composed of rheumatologists, clinical immunologists, nurse practitioners and rheumatology nurses. Although nurses have a major task concerning providing information, support, and education in SLE care<sup>3</sup>, little is known about how patients experience nursing care and what needs and expectations they have. <h3>Objectives</h3> To investigate the patients' needs for nursing support in order to optimise and standardise nursing care in a SLE clinical pathway. <h3>Methods</h3> To identify specific factors regarding nursing care for SLE patients, a literature search was performed. Subsequently, semi-structured interviews were held among patients with SLE from the department Rheumatology and Clinical Immunology of the University Medical Centre Utrecht (tertiary care referral centre with approx. 300 SLE pts/year). The interviews focused on patients' needs, quality of life and nursing care. The questions regarding quality of life were partially derived of the SLE QoL Questionnaire<sup>4</sup> and focused on; daily-, social- or occupational activities, symptoms, medical treatment, and negative emotions. Interviews were recorded, transcribed and analysed with thematic analysis by the researchers and patient partners. <h3>Results</h3> Several tools to explore individual needs among patients with SLE, such as the Dutch version of the Educational Needs Assessment Tool (D-ENAT), were identified<sup>5</sup>. Eight SLE patients were interviewed (female n=6, average age 37.5 years). All were using a DMARD and/or biological. Patients indicated a need for help with problems in daily life, information regarding SLE, peer support, and psychosocial help. Pain and fatigue were the most commonly reported symptoms. Most patients saw their nurse on an irregular basis. They appreciated the accessibility, accuracy, clarity, and patience of nurses. <h3>Conclusions</h3> There is a need for individualised nursing support in dealing with SLE. To assess individual needs among patients, a needs assessment tool could be used. Further research on the usefulness and effectiveness of a needs assessment tool in daily clinical practice is needed. <h3>References</h3> [1] Rahman A, Isenberg DA. (2008) Systemic lupus erythematosus. N Engl J Med. 358(9):929–39. [2] Morgan C, Bland AR, Maker C, Dunnage J, Bruce IN. (2018) Individuals living with lupus: findings from the LUPUS UK Members Survey 2014. <i>Lupus</i>, 0,1–7. [3] Ferenkeh-Koroma A. (2012) Systemic Lupus Erythematosus: nurse and patient education. Nursing Standard, 50–59. [4] Leong KP, Kong KO, Thong B, Koh E, Lian T, et al. (2005) Development and preliminary validation of a systemic lupus erythematosus-specific quality-of-life instrument (SLEQOL). Rheumatology, 1267–1276. [5] Zirkzee EJM, Ndosi ME, Vliet Vlieland TPM, Meesters JJL. (2014) Measuring educational needs among patients with systemic lupus erythematosus (SLE) using the Dutch version of the Educational Needs Assessment Tool (D-ENAT). Lupus, 23,1370–1376. <h3>Disclosure of Interest</h3> None declared