axSpA has a considerable impact on healthcare systems, both in terms of absolute monetary costs and healthcare resource utilization (Heijde et al. 2017; Harvard et al. 2016). An analysis of 216 patients with AS from the Netherlands, France, and Belgium showed that mean direct annual societal costs per patient were €2,640, of which 82% were direct healthcare costs (Boonen et al. 2003). Data from the Atlas of Ankylosing Spondylitis in Spain 2017 study among 578 patients with AS reported that the estimated median annual cost per patient was €5,402, with the majority again accounted for by direct healthcare costs (Merino et al. 2021). The impact of axSpA on healthcare resources is driven by several factors, including the need for multidisciplinary management of the disease and regular follow-up, which is typically coordinated by a rheumatologist but also involves rehabilitation specialists, occupational therapists, physiotherapists, social workers, nurses, manual therapists, podiatrists, dieticians, psychologists, ophthalmologists, and vocational counsellors (Heijde et al. 2017).

9.1 Health Coverage for European IMAS Participants

Healthcare in European countries is provided through a range of different systems, all run at a national level. Generally, these systems are funded primarily through public taxation (universal healthcare); private contributions towards meeting the non-taxpayer refunded portion of costs are necessary in some countries or healthcare may be funded entirely privately (non-subsidized) either out of pocket or through personal or employer-funded insurance. Healthcare systems in the countries participating in IMAS are summarized in Supplemental Table 9.1.

The vast majority of survey participants reported that their main health coverage was public health insurance (Fig. 9.1), which reflects the use of public universal healthcare in most countries participating in the IMAS European survey. More than 15% had private insurance or paid for their healthcare directly. The benefits of private healthcare include reduced waiting times, more regular follow up, and access to the most effective and newest therapies. The reasons why participants sought private treatment were not captured in the IMAS report.

Fig. 9.1
figure 1

Main healthcare funding source for axSpA in the past 12 months per participant (N = 2,002). axSpA axial spondyloarthritis. No data were obtained for Belgium or France as related items were removed from the survey for these countries

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9.2 Management of axSpA

The majority (88.6%) of European IMAS survey participants reported that their axSpA was being managed by a rheumatologist. This is in accordance with current ASAS-EULAR management recommendations (Heijde et al. 2017). The benefits of a rheumatologist managing a patient’s axSpA are obvious; rheumatologists are experienced in treating the signs and symptoms of axSpA while recognizing and managing its extra-articular manifestations and comorbidities (Heijde et al. 2017). Furthermore, treatment by a specialist multi-disciplinary team allows ready access to ancillary services (such as psychology and physiotherapy) and links to patient support groups (Heijde et al. 2017).

In the 11.4% of participants who were not managed by a rheumatologist, data were not collected on which specialty managed their disease. Nevertheless, this represents a relatively large proportion of the IMAS population who were not being managed according to current recommendations.

Over 90% of participants reported having an appointment with a rheumatologist in the 12 months prior to the survey (Table 9.1). The majority of respondents had visits every 2–6 months, which highlights the relatively frequent follow-up required for axSpA patients. The number of visits to a rheumatologist reported here was similar to the rate reported in a previous study of the management of SpA conducted in Spain (Jovani et al. 2017). These data may aid understanding of the impact of axSpA on healthcare providers and inform organizational aspects of its management.

Table 9.1 Frequency of appointments with a rheumatologist in the prior 12 months per participant (N = 2,628)
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Of all axSpA-related healthcare appointments in the prior 12 months, survey participants reported visiting a physiotherapist most frequently (Fig. 9.2). This result is consistent with the needs of patients with axSpA, since a predominant problem is stiffness. Physical therapy is encouraged in current ASAS-EULAR treatment recommendations (Heijde et al. 2017), and usually includes stretching, exercise, improving posture, and even strategies such as selecting the right mattress and workplace chair (Linden et al. 2002; Passalent 2011; Elyan and Khan 2008). Physical therapy can help to relieve pain and stiffness and improve mobility, key aspects for maintaining long-term mobility and health in patients with axSpA (Linden et al. 2002; Passalent 2011; Elyan and Khan 2008).

Fig. 9.2
figure 2

Mean number of axSpA-related healthcare appointments in the prior 12 months per participant (N = 749–2,628). Data are presented as means for the overall survey population, including those with no appointments. axSpA axial spondyloarthritis

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Patients with more active disease (those patients with a BASDAI of 4 or greater) made more visits to HCPs than those with lower disease activity/inactive disease (BASDAI less than 4; Fig. 9.3). This increased healthcare use amongst patients with high disease activity was consistent across all HCP specialties; every specialist, except pulmonologists, cardiologists (and others), received significantly more visits from patients with high disease activity than visits from patients with lower disease activity.

Fig. 9.3
figure 3

Mean number of axSpA-related healthcare appointments in the prior 12 months by level of disease activity (high: BASDAI ≥ 4; low: BASDAI < 4; N = 96–1,860). Data are presented as means for the overall survey population, including those with no appointments. BASDAI Bath Ankylosing Spondylitis Disease Activity Index, axSpA axial spondyloarthritis, GP general practitioner

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9.3 Medical Tests

Patients with axSpA generally require more frequent medical testing than healthy individuals. Among the survey participants, blood and urine tests were the most frequently administered medical tests in the prior 12 months, followed by X-rays, MRI, and ultrasound scans (Fig. 9.4). This finding is as expected and reflects the routine management of individuals with axSpA.

Fig. 9.4
figure 4

Mean number of axSpA-related medical tests in the prior 12 months per participant (N = 1,010–2,558). axSpA axial spondyloarthritis, CT computerized tomography, MRI magnetic resonance imaging. Data are presented as means for the overall survey population, including those with no appointments; the survey in Norway did not collect data regarding radionuclide scintigraphy

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Laboratory testing of blood and urine is often employed to assess general health as well as to measure levels of certain inflammatory markers, while imaging is essential for diagnosis and the assessment of structural damage progression and inflammation in the spine, sacroiliac joints, and any affected peripheral sites (Heijde et al. 2017; Mandl et al. 2015; Birtane et al. 2017; Shaikh and Raftery 2014). The majority of the medical tests reported by the participants were covered by public insurance schemes (Supplemental Fig. 9.1).

X-rays were the most frequent imaging modality reported by the participants, reflecting their recommended use for detecting sacroiliitis (inflammation of the sacroiliac joints) and structural damage in the spine and sacroiliac joints in axSpA (Mandl et al. 2015). Indeed, participants reported X-rays most commonly being performed in lumbar, pelvic, and spinal regions (Supplemental Tables 9.2 and 9.3).

9.4 Impact of Diagnostic Delay on Number of Visits

  • Among patients diagnosed at least 1 year before participating in the survey, those who experienced a diagnostic delay of more than a year (n = 2,208) undertook a considerable number of visits to specialists and medical tests in the year prior to participating in the IMAS European project, which increased with disease activity.

  • Patients with active disease (BASDAI greater than 4) reported a higher number of visits to rheumatologists (3.7 ± 3.5 vs. 2.9 ± 2.6), general practitioners (6.6 ± 10.0 vs. 3.5 ± 4.1), physiotherapists (19.3 ± 25.0 vs. 11.7 ± 17.0), and psychologists/psychiatrists (3.4 ± 10.7 vs. 1.9 ± 7.7) than those patients with inactive disease (BASDAI less than 4).

  • Regarding follow-up tests, patients with active disease also undertook more X-rays (1.8 ± 2.8 vs. 1.3 ± 1.9), MRI scans (0.9 ± 1.2 vs. 0.6 ± 1.1), and blood tests (4.7 ± 4.4 vs. 3.6 ± 3.2) compared with patients with inactive disease.

  • However, one in five patients visited the rheumatologist only once in the year prior to IMAS (21.1%).

9.5 Hospital Admissions, Use of Emergency Services, and Other Healthcare Centers

Overall, the mean (±SD) number of axSpA-related inpatient hospital admissions among survey participants in the prior 12 months was 1.1 ± 2.1. Half the European IMAS participants reported no hospital admissions during this time, while a quarter had one hospital admission and the remaining quarter more than one (Fig. 9.5).

Fig. 9.5
figure 5

Number of axSpA-related inpatient hospital admissions in the past 12 months per participant (N = 1,197)a. axSpA axial spondyloarthritis. aNo data were obtained for Austria or the Netherlands as related items were removed from the survey for these countries

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Fewer than half of the participants reported emergency hospital or outpatient clinic visits in the year prior to the survey, and only one in 10 used other emergency services or ambulance services (Fig. 9.6). Although the majority of inpatient admissions and outpatient visits were covered by public health insurance (Supplemental Fig. 9.2), more than half of emergency services used by survey participants were paid for personally or covered by private schemes.

Fig. 9.6
figure 6

Number of axSpA-related emergency uses of healthcare services in the prior 12 months per participant (N = 868–1,137). axSpA axial spondyloarthritis

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Previous studies have shown higher rates of inpatient admission, emergency department visits, non-hospital-based outpatient visits, hospital-based outpatient visits, and other outpatient services in patients with axSpA compared with matched controls (Walsh et al. 2018). The reasons for hospital admission or emergency services use were not captured in the IMAS survey but the high prevalence of comorbidities in patients with axSpA has been highlighted as a contributing factor in previous studies (Walsh et al. 2018). Nevertheless, the IMAS data aid our understanding of the impact of axSpA on healthcare providers, which may be useful for improving organizational aspects of disease management in the future.

9.6 Use of Alternative Therapies

Alternative therapies such as acupuncture, homeopathy, and aromatherapy were frequently used by the survey participants (Fig. 9.7). More than one-third of survey participants reported using an alternative therapy of some kind, mostly acupuncture. Those who used these therapies did so regularly, between two and three times per month. Although the reasons for using alternative therapies were not captured, this finding may reflect the relatively high disease activity in the participants despite treatment with conventional therapy.

Fig. 9.7
figure 7

Percentage of participants reporting use of alternative therapies for axSpA (N = 2,100). axSpA axial spondyloarthritis

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A previous study that surveyed the beliefs of patients with spondyloarthritis found that some patients believe that alternative therapies can help prevent the exacerbation of pain and flares (Berenbaum et al. 2014). However, it is important to note that such therapies are usually started without consulting the managing physician (Berenbaum et al. 2014), and despite anecdotal evidence of modest benefits with some alternative therapies, there is currently a lack of robust evidence for the benefits of complementary medicines in axSpA (Danve and Deodhar 2018; Phang et al. 2018; Chatfield et al. 2009). Further research into such therapies and the rationale for why patients chose to use them is warranted.

9.7 Conclusions

  • Patients with more active disease (those patients with a BASDAI of 4 or greater) made more visits to healthcare professionals than those with lower disease activity/inactive disease (BASDAI less than 4).

  • Nine out of 10 IMAS European survey participants reported that their axSpA was being managed by a rheumatologist with most seeing their rheumatologist every 2–6 months.

  • One in 10 participants were not treated by a rheumatologist, indicating that a relatively large proportion were not having their disease managed according to current treatment recommendations.

  • The most visited HCPs were physiotherapists, which highlights the vital role they play in treating the pain and stiffness associated with axSpA with stretching and exercises.

  • A significant proportion of participants (~35%) reported use of alternative therapies, despite the lack of robust evidence for complementary medicine in axSpA.