AB0481 PATIENT’S PERSPECTIVE ON PATIENT EDUCATION IN AXIAL SPONDYLOARTHRITIS: A QUALITATIVE STUDY
Authors: Y. M. van der Kraan, D. Paap, N. Lennips, E. C. A. Veenstra, S. Kieskamp, A. Spoorenberg
Journal: Annals of the Rheumatic Diseases (2021)

Background: Within the EULAR recommendations patient education (PE) is stated as the basis of axial spondyloarthritis (axSpA) management, since PE contributes to reaching treatment goals. 1 However, educational needs are scarcely qualitatively studied in patients with axSpA and the EULAR recommendations of PE are primarily based on research in patients with rheumatoid arthritis. The World Health Organization advocates the incorporation of qualitative research into the development of guidelines and recommendations, 2 since it generates rich and detailed data providing explanations and understanding of the complexity of human behaviour and decision-making. 3 Objectives: To explore perceptions, experiences and needs of PE in patients with axSpA. Methods: An interpretive phenomenological approach was applied and data was collected through semi-structured in-depth interviews with axSpA patients with a broad variation in characteristics. The data collection and analysis was conducted in an iterative manner. Thematic analysis was applied to translate experiences and perceptions from the interviews into themes. 4 Multiple strategies were used to enhance credibility: data saturation, research triangulation, bracketing, member checking, theoretical notes, and peer debriefing. Results: Twelve patients participated, for characteristics see Table 1. From the participants’ perspective three interrelated themes regarding PE are important for healthcare professionals (HCP) to pay attention to: illness perception, content and availability . 1) Illness perception , defined as patients’ personal understanding and belief about their disease, affects how patients experience and process PE which consequently influences coping strategies with their disease. 2) The following topics concerning content are reported as most important in PE for patients with axSpA: prognosis, treatment, and the influence of lifestyle aspects. 3) Availability of PE: face-to-face contact with a HCP is the preferred method for exploring patients’ personal needs in PE. Additionally, active self-education is preferred to learn more about the different subjects which patients can apply when preferred. Furthermore, participants reported a relationship of trust between patient and HCP and sufficient amount of time in combination with a comprehensible amount of information to support their understanding (health literacy) as prerequisites for effective PE. Table 1. Characteristics of the patients with axSpA in this study Participants Sex Age Symptom years Diagnosis years ASDAS Disease activity PASS Level of education Marital status 1 M 39 18 15 0.47 ID Yes ISCED 7 Single 2 M 56 30 30 2.90 HDA No ISCED 3 Divorced 3 M 24 10 9 0.88 ID Yes ISCED 7 In a relationship 4 M 32 20 13 1.04 ID Yes ISCED 6 In a relationship 5 M 66 24 23 1.33 LDA Yes ISCED 3 Married 6 M 33 7 5 1.20 ID Yes ISCED 7 Married 7 M 56 9 6 2.72 HDA - ISCED 2 Married 8 F 30 15 9 2.11 HDA No ISCED 3 Single 9 F 36 14 12 1.22 ID Yes ISCED 7 Married 10 F 56 18 17 3.23 HDA - ISCED 2 Married 11 F 33 10 5 1.66 LDA Yes ISCED 3 Divorced 12 F 27 3 2 1.90 LDA No ISCED 7 In a relationship M = Male; F = Female; ASDAS = Ankylosing Spondylitis Disease Activity Score; ID = inactive disease, LDA = low disease activity, HDA = high disease activity; PASS = Patient Acceptable Symptom State Questionnaire; ISCED 2011 = International Standard Classification of Education 2011 Conclusion: This first bottom-up qualitative study exploring perceptions, experiences and needs of PE in patients with axSpA, shows that HCP should pay attention to patients illness perception to promote effective delivery of PE. Additionally, diagnosis, treatment and lifestyle aspects are important subjects and a combination of face to face contact and self-education is preferred by the patients. These results will provide disease specific content for future guidelines regarding PE in axSpA. References: [1]Zangi HA, et al. Ann Rheum Dis. 2015;74:954-962 [2]Downe S, et al. Heal Res Policy Syst. 2019;17,1-12 [3]Kelly A, et al. J Rheumatol. 2021;48,6-15 [4]Braun V, et al. Qual Res Psychol. 2006;3:77–101 Disclosure of Interests: None declared.