The term Spondyloarthritis (SpA) describes a group of chronic inflammatory diseases that share clinical, pathogenic, genetic, radiological, epidemiological, and therapeutic response characteristics.1 Currently, patients with SpA are commonly classified according to the predominant manifestations in peripheral and axial SpA (axSpA).2,3 At the same time, axSpA includes Ankylosing Spondylitis (AS) and Non-Radiographic Axial Spondyloarthritis (nr-axSpA), which represents a form of axSpA without a substantial radiographic structural damage.

Nowadays, the mean estimated AS prevalence in Europe (from 36 eligible studies) is 23.8 per 10,000.4 Disease onset occurs commonly before 45 years of age, leads to severe functional disability and loss of work capacity, generally coinciding with a productive life period.5 Some studies have shown an unemployment rate of 25% among AS patients; in up to 21% of cases this is attributed to the disease.6 In this sense, one main challenge of axSpA is the huge diagnostic delay, which prevents initiating the most appropriate treatment during the initial phases. This is largely associated with disease progression, irreversible structural damage, and loss of patient mobility.7–9 During the last decade, many advances in the field of axSpA have been achieved. In 2009, the ASAS classification criteria for axSpA were developed, including the implementation of the magnetic resonance imaging of the sacroiliac joints in patients with suspected axSpA.1,10 This results in an increased ability to detect inflammation during the first stages of the disease, much longer before structural damage can be detected by other methods, such as x-ray or computed tomography.11 In addition, new therapies (biological therapies) have been developed and have shown to be efficacious in patients with axSpA too.

In Spain, data available for both diagnosis and disease outcomes are drawn from studies completed more than a decade ago.12,13 Therefore, to date, it is unknown whether or not all the medical advances achieved have had any impact on the course of the disease and quality of life of patients. On the other hand, there is a wealth of information about axSpA from the clinical point of view, in addition to the most appropriate pharmacological treatments. However, few studies have evaluated aspects such as healthcare planning, treatment resources, reasons for diagnostic delay, functional limitations, psychological status, productivity losses, costs associated with disease management, or patient opinion. Thus, it was decided to undertake the Atlas of Axial Spondyloarthritis in Spain 2017 project.

The Atlas 2017 aims to better understand the current reality of people suffering from axSpA from an integrative perspective based on scientific evidence, expert knowledge, and patient opinion. The study objectives were to assess the main barriers and difficulties for diagnosis, health care, pharmacological and non-pharmacological treatments, labor productivity losses, and the direct health and non-medical costs of the Spanish National Health System derived from the disease.

A total of 838 patients with axSpA accessed the questionnaire. After the validation and homogeneization process, the survey database was comprised of a total of 680 patients, distributed homogeneously by gender through the 17 Spanish Autonomous Communities.

The sociodemographic characteristics of the included patients are detailed in Table 2. Gender distribution was homogeneous across the sample. The majority of patients were married, within the range of working ages, and with a significant percentage having some degree of recognized disability. On the other hand, although an important part of the survey dissemination was carried out through SpA patient associations, less than half of respondents were members of one of these patient associations.

Table 3 shows the clinical self-reported characteristics of patients. In addition to the data shown in this table, it is noteworthy that 61% of patients reported moderate to severe stiffness and 74.9% had a medium-high degree of limitation. On the other hand, 76.7% of the patients presented a BASDAI above the cut-off point for active disease (≥4). Similarly, the GHQ-12 mean score exceeded the cut-off point to define psychological distress (≥3) with 65.4% of the patient above this point,18 with the main comorbidities self-reported being anxiety, sleep disorder, depression and overweight/obesity. Most patients were taking NSAIDs, followed by biological therapy, and DMARDs. However, a significant percentage of patients reported that they were not currently receiving any pharmacological treatment despite the 2016 update of the ASAS-EULAR management recommendations for axSpA.27

Atlas 2017 also assesses the economic burden of AS in Spain. The social perspective was used and the estimated average cost per patient per year is €11,462.3 (including direct health care costs, direct non-medical costs and productivity losses). Out of this, more than half are related to direct health costs, followed by costs associated with labor productivity loss and, finally, direct non-medical costs (Table 4).

Atlas 2017 is the most ambitious project promoted from Spanish Coordinator of Associations of Spondyloarthritis (CEADE) to date and aims to respond to a shortage of information on axSpA in Spain, including the patient's perspective. The data collected provide a comprehensive and current vision of axSpA in Spain and the implications for patients coping with this chronic condition. The main tool of the Atlas has been the anonymous online survey carried out on a wide sample of patients distributed throughout the country, promoted, and disseminated by the CEADE patient associations. However, this was not a limitation since only 44.3% of respondents were members of patient associations.

Among the most relevant data, we should highlight a diagnosis delay of 8.5 years and the large burden associated with the disease in terms of disability. This describes a worrisome situation and highlights the difficulties that still persist today regarding early diagnosis, which could largely prevent its evolution. In addition, less than 50% of respondents were working at the time of the survey, which is of concern considering that the average age was around 45 years. On the other hand, the mean 5.5% BASDAI reported by patients indicates that, for most, the disease is not controlled. Finally, this study also demonstrates the great psychological impact of this disease, since the GHQ-12 showed a high average score (value 5.7). Using this data, a document was created (English and Spanish versions are available at www.espondiloartritisaxial.org/atlas) that deepens the knowledge of axSpA in Spain and provides new evidence aimed at improving patient care and quality of life.

One of the main contributions of the Atlas 2017 has been the incorporation of the patient's perspective. Unlike other reports or research carried out on axSpA, it not only seeks to capture the burden of disease from a medical and health perspective, but also to reflect the patient's overall experience in terms of the physical, social, emotional, labor and economic limitations, among others. This study outline the importance of a strong partnership developed between researchers (academic institutions), scientific societies of rheumatology, healthcare professionals and patients with rheumatic diseases.

In the future, the database derived from the Atlas 2017 survey will allow analysts to answer key research questions, such as: what are the reasons for the diagnostic delay?; what are the key risk factors for structural damage?; how does the disease severity affect psychological distress?; what is the relationship between unhealthy habits and disease activity?; or the possible benefits of belonging to a patient association.

However, the Atlas 2017 project does have a number of limitations. In the first place, having collected the data through a patient survey online, this could bias the study results since it is possible that patients with higher disease severity tend to respond more frequently to surveys. Being self-reported patient information, there may be some difficulty ensuring proper SpA diagnosis and accurately establishing the type of axSpA experienced.12,13 On the other hand, it should be noted that the survey did not collect direct non-medical costs related to the transportation of patients to attend consultations, tests, emergencies, and other health services. Likewise, it did not include information about professional and informal care received by patients, nor about adaptations made to housing as a result of physical limitations. Previous studies have shown that patients with advanced AS can incur significant out-of-pocket costs to cover informal care and accommodation.28 Therefore, it was necessary to estimate the cost related to informal care and housing adaptations, taking data from the literature.

The Atlas 2017 has achieved great impact at national level, being published by the Institute Max Weber.29 Likewise, a multitude of informative support content has been generated, including the specific web of the Atlas 2017 (www.espondiloartritisaxial.org/atlas/), infographics, and a documentary aimed at enhancing scientific and social understanding. Proof can be seen in the high number of downloads relating to this document to date. On the other hand, the Atlas data are being presented and discussed with the regional health authorities of Spain (Autonomous Communities) to put the axSpA in the health agendas in order to plan and implement solutions at National Health Service level to improve patient's health.

The Atlas 2017 has been considered a benchmark study. As a result, its methodology is being implemented in 12 other European countries (Austria, Belgium, France, Germany, Italy, Netherlands, Norway, Russia, Slovenia, Sweden, Switzerland and United Kingdom) under a joint project called EMAS (The European Map of Axial Spondyloarthritis). EMAS is promoted by the Ankylosing Spondylitis International Federation (ASIF), CEADE, and the University of Seville. In this way, it is intended to assess the existing inequalities and disparities between countries and establish recommendations aimed at improving patient care in Europe.

The Atlas 2017 aims to better understand the current reality of people suffering from axSpA from an integrative perspective based on scientific evidence, expert knowledge, and patient opinion. The patient survey data shows still a long diagnostic delay, high disease activity, psychological distress, while an important proportion could be undertreated.

The authors declare that they have no conflicts of interest.