FRI0646-HPR MAPPING THE PATIENT JOURNEY OF NON-RADIOGRAPHIC AXIAL SPONDYLOARTHRITIS: PERSPECTIVE OF PROFESSIONALS AND PATIENTS
Authors: T. Oton, C. Sastré, L. Carmona
Journal: Annals of the Rheumatic Diseases (2020)

Background: Non-radiographic axial spondyloarthritis (nr-ax-SpA) is a relatively new disease classification that has generated controversy among payers. Objectives: To explore the perspective of patients and health care professionals (HCPs) on the journey from first symptoms to a diagnosis of non-radiographic axial spondyloarthritis (nr-ax-SpA), in order to identify gaps and unmet needs. Methods: Qualitative study in two phases: (1) focus groups with HCPs and personal interviews with patients; (2) nominal group in which results were discussed with all stakeholders and possible solutions were proposed. Content analysis, patient journey mapping, and ideas generation techniques were used. Results: Five focus groups were organised with rheumatologists, GP, orthopaedic surgeons, physiotherapists, and radiologists, and six patient interviews were held. HCPs recognised poor communication among specialists and contradictory or redundant approaches. Non-rheumatologists recognise poor training on spondyloarthritis, difficulty in identifying red-flags, and biases in differential diagnosis. Rheumatologists recognise that SpA nomenclature can be confusing, nevertheless nr-ax-SpA term is defining an early stage of ankylosing spondylitis, and it could lead to over-diagnosis. Most of the patients agreed in the narrative of a very long journey with a multitude of diagnoses, mostly wrong, ineffective treatments and much frustration; acknowledging the need for psychological support during the process and the importance of receiving a diagnosis in order to cope with the disease. The participants in the nominal group meeting recognised and discussed the problems derived from the diagnostic delay and care gaps that clearly affect people with nr-ax-SpA (Table 1). Table 1. Problems recognised by the different actors involved in the journey. Problem Recognised by Pt PT Or GP Rh Ra Non-recognition of symptoms X X Delay first visit to doctor X Cancel appointments X Self-medication X Disease denial X Invisibility X Lack of adherence X Ignorance of medication X Unclear symptoms X X X X No clinical filter by back problems X Treatments variability X Ineffective protocols X X Lack of time X X X X Lack of resources (human and material) X X X Lack of commitment X X X X X Not outcome measurement X X X X Inadequate knowledge/training X X X Few explanations / patient education X X X X Focused on “our” diagnostic codes X X X X X No relation between specialties X X X X X Prioritization of tests over solutions X X X Labelling patients (prejudice) X X X X Inadequate referral circuits X X X X X Demotivating delays X Limited medical history / little research X Temporality of work contracts X Limited access to tests X X Non-sustainability threat X Lack of specialised support X Diagnostic dispersion X Too much weight of local issues X Absence of protocols or outdated X X Poor information transmission in all directions X X X X X X Focus on pharmacological treatments X Ignorance of others’ roles X Gender bias X Incomplete order forms X Abbreviations: Pt, patient; PT, physical therapist; Or, orthopaedic surgeon; GP, general practitioner; Rh, rheumatologist; Ra, radiologist. The following were indicated as possible solutions: (1) Improving relations between specialities, (2) High resolution consultations, (3) Rethinking disability scales, (4) Better information, (5) Visibility, (6) Resource maps and (7) Citizen training. Conclusion: The patient’s journey with an nr-ax-SpA is long, complicated and frustrating for both the person who experiences it and the HCPs who care for them. It is necessary to improve the knowledge about nr-ax-SpA among non-rheumatology health HCPs along with low back pain in general, among doctors and the general population, as well as other feasible measures that affect multiple levels. Disclosure of Interests: Teresa Oton Consultant of: Novartis Farmaceutica, SA, Pfizer, S.L.U., Merck Sharp &amp; Dohme España, S.A., Roche Farma, S.A, Sanofi Aventis, AbbVie Spain, S.L.U., and Laboratorios Gebro Pharma, SA (All trhough institution), Carlos Sastré Employee of: YES; I´m Medical Advisor in Novartis Spain, Loreto Carmona Grant/research support from: Novartis Farmaceutica, SA, Pfizer, S.L.U., Merck Sharp &amp; Dohme España, S.A., Roche Farma, S.A, Sanofi Aventis, AbbVie Spain, S.L.U., and Laboratorios Gebro Pharma, SA (All trhough institution)