Background In patients with axial spondyloarthritis (axSpA), diagnosis delay (DD) postpones the initialisation of the most appropriate treatment with irreversible consequences on physical function, mobility and quality of life of patients. DD is also responsible for increased health costs resulting from incorrect referrals, visits to inappropriate health professionals and poorly planned diagnostic tests. Many initiatives have been undertaken in recent years in an attempt to reduce DD but their influence is still unknown.
Objectives i) To determine diagnosis delay in patients with ax-SpA in Spain; ii) To assess the pre-diagnosis care process; iii) To analyse the possible beneficial effects on DD of a training programme for primary care physicians and early referral to rheumatology units.
Methods A sample of 680 patients diagnosed with ax-SpA was interviewed during 2016 as part of the Atlas in Spain. This project aims to improve early diagnosis and to promote the use of effective treatments in ax-SpA patients. Collected data included: socio-demographics, medical visits prior to diagnosis, date for first symptoms and diagnosis and disease characteristics. This information was used to determine the DD and the possible beneficial effects on DD of a training programme for primary care physicians and early referral to rheumatology units. A descriptive analysis was performed, stratifying the results according to the start of the symptoms (before and after 2009). The ESPeranza Program (a Spanish prospective multicentre national health programme aimed at facilitating early diagnosis of patients with ax-SpA) started in 2009.
Results 53% of the patients included were females. Mean scores (standard deviation) were 45.7 (10.8) years for age and 12.4 (11.2) for disease duration. 77.1% were HLA-B27+. Visits to health professionals prior to diagnosis included: primary care physicians (88.5%), orthopaedic surgeons (71.7%), rheumatologists (70.4%), and physiotherapists (47.6%). The mean number of consultations prior to diagnosis was 2.6; 3.0; 2.0 and 3.4, respectively.
Patients stated the onset of the first ax-SpA symptoms was at mean 24.4 years of age, with diagnosis at mean 32.9 years of age, translating into a mean DD of 8.5 years. For 25% of patients DD was >12 years, whereas a DD of <2 years was found in only 25% of respondents. Mean DD for patients whose first symptoms appeared before 2009 was 9.5 years, whereas for patients whose first symptoms appeared after that date it was significantly reduced to 2.5 years.
Conclusions The mean delay in diagnosis ax-SpA in Spain is above 8 years. Patients make a large number of visits to a variety of specialist physicians before they are diagnosed, which could point to proof of wrong referrals by primary care. However, DD has fallen drastically (to a mean 2.5 years) since the implementation of the ESPeranza Program in 2009, suggesting that training primary care physicians have substantial beneficial effects on patients with ax-SpA and the care process.
Acknowledgements This project has been supported by Novartis.
Disclosure of Interest None declared