Pos0955 patients’ perspectives on disease- and treatment-related issues are essential for treatment success in patients with spondyloarthritis and associated diseases: a qualitative clinical concept mapping study

BackgroundEach patient’s way of living with and relating to their chronic disease is unique. However, patients with chronic diseases may have some mutual concerns and challenges. They must not only handle the disease itself, but also the consequences that the disease has for their everyday and emotional lives1.Exploring the patient’s perspectives for significant factors of relevance for patients living with a chronic disease is important in order to discover unmet needs and challenges for complying with a comprehensive lifelong treatment strategy and ensuring high-quality lives. Increasing awareness about the possible discrepancy between doctor experienced quality in care and patient experienced quality in care is of high relevance when aiming to ensure optimal disease management.ObjectivesThe objective of this study was to explore disease- and treatment-related issues and concerns experienced by adult patients with spondyloarhtritis (SpA) and associated diseases; psoriatic arthritis (PsA), psoriasis (PsO), axial spondyloarthritis (axSpA), and inflammatory bowel disease (IBD; Crohn’s disease (CD) and ulcerative colitis (UC)), and whether these factors were generic or disease dependent.MethodsConcept Mapping were used to identify and organize disease- and treatment-related issues and concerns2. Concept Mapping is a formal group process with a structured approach to identify ideas on a topic of interest and organize them into cogent domains. Participants were asked to respond to an initial task: ‘Thinking as broadly as you can, please list your thoughts (issues and concerns) related to your disease”, PsA, PsO, axSpA, CD or UC, respectively.Data were obtained through a nominal group technique and then organized using participants’ themes, multidimensional scaling, cluster analysis, participant validation, and thematic analyses to generate a conceptual model of disease- and treatment related issues and concerns experienced by patients with PsA, PsO, axSpA, CD, and UC.ResultsSeven AxSpA patients, 8 PsA patients, 9 PsO patients, 13 CD patients, and 13 UC patients contributed to generating the conceptual models. Seven AxSpA clusters, 7 PsA clusters, 7 PsO clusters, 10 CD clusters, and 11 UC clusters with each cluster having sub-clusters, emerged from the workshops producing 137 AxSpA statements, 160 PsA statements, 187 PsO statements, 335 CD statements, and 408 UC statements. Some clusters were generic: ‘Concerns about the disease and the future’, ‘Consequences of the disease’, ‘Acceptance of the disease’, ‘Medication and treatment’, and ‘At the doctor’ (Figure 1). Specific clusters were: for AxSpA: ‘Use of public services, for PsA: ‘Difficult to have an invisible disease’, for PsO: ‘Ashamed (about appearance)’, for CD: ‘Speculations and thoughts; life now and in the future - can I expect more surgeries in the future?’, and for UC: ‘The influence and importance of the diet’ and (Figure 1).Figure 1.ConclusionPatients with SpA and associated diseases largely agree on which concepts describe their disease- and treatment-related issues and concerns with a few of them being disease-dependent.Living a good life with a chronic disease is much more than having clinical control of the disease. This study gives insight to patients’ perspectives on themes that are essential when living with a chronic disease. Considering the patients’ perspectives, it is necessary to promote patient empowerment and adherence to treatment, and thereby optimize disease management and quality of life.References[1]Van Houtum L, Rijken M, Groenewegen P. Do everyday problems of people with chronic illness interfere with their disease management? Chronic Disease epidemiology. BMC Public Health [Internet]. 2015;15(1):1–9.[2]Trochim W, Kane M. Concept mapping: An introduction to structured conceptualization in health care. Int J Qual Heal Care. 2005;17(3):187–91.AcknowledgementsWe would like to thank all the participants who generously shared their experiences and valuable knowledge concerning life with a chronic disease.Disclosure of InterestsZara Rebecca Stisen: None declared, Marie Skougaard Grant/research support from: M. Skougaard has received research funding from Eli Lilly and Pfizer that is unrelated to the current abstract., Rebekka L. Hansen: None declared, Katrine Risager Christensen Grant/research support from: K.R. Christensen has participated in advisory board for Gilead Nordic and received unrestricted grants from Pfizer and Gilead Nordics, Lars Erik Kristensen Speakers bureau: Pfizer, AbbVie, Amgen, UCB, Gilead, Biogen, BMS, MSD, Novartis, Eli Lilly, and Janssen pharmaceuticals, Consultant of: Pfizer, AbbVie, Amgen, UCB, Gilead, Biogen, BMS, MSD, Novartis, Eli Lilly, and Janssen pharmaceuticals., Tanja Schjødt Jørgensen Speakers bureau: AbbVie, Pfizer, Roche, Novartis, UCB, Biogen and Eli Lilly, Consultant of: AbbVie, Pfizer, Roche, Novartis, UCB, Biogen and Eli Lilly.