AB1590-HPR EXPERIENCES OF DELAY IN LUPUS: A QUALITATIVE SYSTEMATIC REVIEW
Authors: I. Peláez-Ballestas, A. Manrique de Lara, Y. Fuentes-Silva, T. Colmenares-Roa, L. Athié, M. F. Ramírez-Flores, C. Cadena-Trejo, A. Gastelum-Strozzi
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Understanding delay in diagnosis and treatment of lupus is essential for care. However, there is no consensus on the definition of delay in lupus. The experiences with lupus can help elucidate this phenomenon. <h3>Objectives:</h3> To describe the experiences of delay in lupus through a systematic review of qualitative and mixed-method studies in patients diagnosed with lupus, caregivers and physicians. <h3>Methods:</h3> Electronic searches were conducted in Scopus, PubMed and Web of Science for studies in English and Spanish published up to July 15th, 2023. A multidisciplinary review group (rheumatologists, anthropologists, nurse, bioethicist, and patients) worked as follows: 1) specific keywords were searched for in the title, abstract, keywords and text; 2) titles and abstracts were screened; 3) full-text reviews were conducted; 4) a critical appraisal checklist [1] was completed as quality control; 5) chosen articles were synthesized. <h3>Results:</h3> A total of 1800 articles were identified; 1132 remained after eliminating duplicates. Abstracts were screened for the 27 articles that met inclusion criteria, 21 were eligible for full-text review, and only 12 were included for quality evaluation and synthesis: 10 qualitative and 2 mixed-methods (Table 1). Most of the studies were from the Global North, with only two from Latin America and two from Africa. Most publications focused on adult patients; only two included pediatric/transition patients, one caregivers, and two physicians. The qualitative methodologies used were: semi-structured interviews, focus groups, virtual research, and questionnaires. The main theoretical frameworks used were: phenomenology, grounded theory, and hermeneutics. None of the publications specifically define diagnostic delay in lupus, or propose a framework to study this phenomenon. However, they do indicate a variety of barriers and facilitators to care in multiple dimensions: the characteristics of the disease itself, emotional factors, economic and financial considerations, families and support networks, the physician-patient relationship, the relationship with the healthcare system, and broad sociocultural aspects. Patients often mention experiencing a sense of invisibility and invalidation by both physicians and support networks, contributing to stigma and isolation. Minimizing initial symptoms leads to misdiagnosis and the need to seek multiple medical professionals. Additionally, uncertainty, ambivalence, frustration and even guilt surround the patient experience. As such, patients highlight the importance of honest communication about prognosis and treatment for a positive physician-patient relationship. Low adherence and use of non-pharmacological treatments are also discussed as part of the patient experience, along with coping mechanisms and resilience. Caregivers emphasize similar aspects of the experience of delay, such as social stigma and the lack of efficient communication with health professionals. Additionally, they focus on the origins of disease, financial obstacles and burdens, and systemic barriers more broadly. Primary care providers recognize the gap in lupus health literacy in patients, caregivers and themselves, emphasizing the need for continued education and access to specialists. Finally, we highlight the (over)reliance on positive antinuclear antibodies for a lupus diagnosis and thus for validating the patient experience. <h3>Conclusion:</h3> The experiences of the healthcare triad (patient, patient's family, and health professionals) are a fundamental element to describe the process of delay, and the related barriers and facilitators. Thus, specific studies are needed to define diagnostic delay in lupus, which include the perspectives of all relevant actors within specific sociocultural contexts. <h3>REFERENCES:</h3> [1] Lockwood C, Munn Z, Porritt K. Qualitative research synthesis: methodological guidance for systematic reviewers utilizing meta-aggregation. Int J Evid Based Healthc. 2015;13(3):179–187. <b>Table 1.</b> Synthesis of a qualitative systematic review of experiences of delay in lupus. <h3>Acknowledgements:</h3> This protocol was registered with the international prospective register of systematic reviews (PROSPERO CRD42023456508). AMdL, YFS and IPB were part of this study on behalf of the Latin American Group for the Study of Lupus GLADEL/PANLAR. <h3>Disclosure of Interests:</h3> <b>None declared.</b>