Psychological distress is frequently experienced by patients with axSpA, with some studies reporting that more than 50% of patients have concomitant depression or anxiety (Zou et al. 2016; Kilic et al. 2014; Shen et al. 2016; Hakkou et al. 2013; Meesters et al. 2014a). The exact mechanisms that lead to poor psychological status are not completely understood. It seems intuitive that the common symptoms of axSpA such as loss of mobility, stiffness, chronic pain, and fatigue, and their resultant interference with many aspects of daily functioning, including recreational activities, work, family life, and relationships are involved (Yang et al. 2016). Appreciation of the mental health of patients with axSpA is an important facet of their overall care as it can have a significant impact on response to treatment (Kilic et al. 2014).

In this chapter, the psychological health of the participants in IMAS will be described and the role of sociodemographic variables, clinical characteristics, and exercise in psychological health examined.

7.1 Overall Psychological Health

The psychological health of the European IMAS population was generally poor across the majority of participating countries (Supplemental Fig. 7.1). The mean (±SD) GHQ-12 score amongst 2,640 participants was 5.0 (±4.1) and 62% of survey participants declared a GHQ-12 higher than 3, signifying a risk of psychological distress (Banks 1983).

IMAS participants at risk of psychological distress also reported a higher mean (±SD) number of psychological comorbidities than those at lower risk (1.3 ± 1.2 vs. 0.5 ± 0.8; Mann–Whitney test p-value < 0.001). Many participants reported trouble sleeping (50.5%), anxiety (38.6%) and depression (33.9%), and the mean number of visits to a psychiatrist and/or psychologist over the past 12 months was 2.5 in the 1,235 participants who answered this question.

Given the high burden on mental health reported in this study, a mean of 2.5 visits to a psychiatrist and/or psychologist could be seen as being low. In general, psychotherapies based on cognitive-behavioral techniques for anxiety or depression would require between 8 and 20 sessions of individual therapy (Widnall et al. 2020). In this context, the findings of our survey suggest that either the psychological interventions being employed are too short to improve health outcomes, or that European axSpA patients are heavily relying on psychiatric care. As an effective psychiatric care would require at least three sessions a year (one for setting the treatment, one or two for short-term monitoring and one for long-term follow-up), one may hypothesize that European axSpA patients are not getting sufficient treatment for their psychological health.

Data on visits to mental health professionals of axSpA patients are scarce. A cross-sectional study in Spain reported that, in the 2-year period prior to the survey, only 2.1% of patients sought psychiatric care and only 0.9% sought psychological care (Jovani et al. 2012).

These findings highlight the significant toll of axSpA on psychological health. A holistic approach to care is therefore necessary when treating axSpA, taking into consideration psychological as well as physical symptoms (Packham 2018).

Poor sleep is a common complaint in patients with axSpA, with a recent systematic literature review indicating that 35–90% of patients experience this symptom (Leverment et al. 2017). Poor sleep in axSpA is associated with poorer quality of life, general health, mood, and work-related measures (Wadeley et al. 2018) and thus further efforts are required in clinical practice to assess and treat this common and often under-appreciated symptom. A meta-analysis of 16 axSpA studies found a prevalence of depression of 11–64% (Zhao et al. 2018), while anxiety was evident in 40% of patients with axSpA in a recent Chinese single-center study (Zou et al. 2016). These prevalence rates, like those reported in the IMAS survey, are in stark contrast to the background WHO prevalence rates in countries participating in IMAS, where anxiety ranged from 3.1–7.4% and depression from 4.5–5.5%. Recognizing and treating these common psychological comorbidities promptly in patients with axSpA is vital for ensuring an optimal outcome (Kilic et al. 2014).

7.2 Further Research is Required to Investigate the Link Between Sociodemographic Factors and Psychological Health in axSpA to Aid Identification of At-Risk Groups

The relationship between psychological health and a number of sociodemographic variables was assessed in IMAS, with significant associations identified between GHQ-12 score and age, gender, marital status, and income (Table 7.1;Supplemental Fig. 7.2). Psychological health was worse in participants who were younger, female, single or separated/divorced, and those who had lower income. In a previously reported analysis among the subset of patients from Spain included in IMAS, bivariate analysis of sociodemographic factors similarly found an association between having no partner and worse mental health, but in contrast patients who were older or male had worse mental health (Garrido-Cumbrera et al. 2019).

Table 7.1 Mean General Health Questionnaire (GHQ)-12 score of survey participants in subgroups stratified by sociodemographic variables
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While the relationship between sociodemographic factors and psychological health is well characterized in rheumatoid arthritis (Geenen et al. 2012), there is a relative lack of research on this in axSpA. A relationship between psychological health and income is in agreement with a recent German study that identified lower income as a significant risk factor for poorer psychological well-being in patients with axSpA (Redeker et al. 2018). However, previous studies have not shown a relationship between age and psychological health (Zou et al. 2016; Martindale et al. 2006), or between gender and psychological health (Webers et al. 2016). Furthermore, there is no other evidence linking marital status with psychological health. A previous study in 316 patients with axSpA identified lower education level as an independent risk factor for anxiety and depression, in contrast to the results presented here (Kilic et al. 2014). The reasons for these discrepancies are unclear but may be due to the use of GHQ-12 in the IMAS questionnaire as opposed to alternative measures of psychological health in other studies or due to the comparatively large sample size in IMAS versus previous studies.

7.3 Psychological Health and Clinical Characteristics

Significant relationships were observed between GHQ-12 score and BASDAI, Spinal Stiffness Index, Functional Limitation Index, and diagnostic delay (Table 7.2).

Table 7.2 Disease activity (BASDAI), spinal stiffness (Spinal Stiffness Index), and function (Functional Limitation Index) by GHQ-12 cut-off
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Generally, a higher GHQ-12 score was associated with higher disease activity and spinal stiffness, a greater degree of functional impairment (the limitation experienced in independently carrying out daily activities), and a longer diagnostic delay (Table 7.3). Furthermore, a higher proportion of participants with active disease (BASDAI ≥ 4) were at risk of psychological distress than those with inactive disease (BASDAI < 4; Supplemental Table 7.1), and GHQ-12 score was higher in patients with more severe spinal stiffness, regardless of the region of the spine affected (Supplemental Table 7.2).

Table 7.3 Associations (Pearson’s correlations) between GHQ-12 score or number of psychological comorbidities and select clinical characteristics
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Significant relationships were also observed between the number of psychological comorbidities (sleep disorders, anxiety, and depression) reported by participants and disease activity (BASDAI) and spinal stiffness (Spinal Stiffness Index) (Table 7.3). Participants with higher disease activity or more severe spinal stiffness had significantly higher numbers of psychological comorbidities than those with lower disease activity and less severe stiffness. This finding was confirmed in further analyses which showed that participants with active disease (BASDAI ≥ 4) had more psychological comorbidities than those with inactive disease (BASDAI < 4; Supplemental Table 7.3) and the number of psychological comorbidities was higher in patients with more severe spinal stiffness, regardless of the region of the spine affected (Supplemental Table 7.4).

These results highlight how various aspects of axSpA are interlinked. Impaired psychological well-being might affect a patient’s perception of disease activity, stiffness, or function. Conversely, higher disease activity, more severe stiffness, or greater functional impairment might lead to the development of psychological distress.

Results from previous clinical studies corroborate the IMAS data. In a German survey of 1,736 patients with axSpA, psychological well-being (assessed using WHO-5) was associated with both disease activity (BASDAI) and function (Bath Ankylosing Spondylitis Functional Index [BASFI]) (Redeker et al. 2018). Several other studies have also established a link between disease activity and functional limitation with measures of psychological health such as anxiety and depression (Zhao et al. 2018; Martindale et al. 2006; Webers et al. 2016; Meesters et al. 2014b). Frequently associated with pain and limited function and mobility (Sieper and Poddubnyy 2017), spinal stiffness has also been linked to impaired psychological health, although it is potentially less important than disease activity and functioning (Zhao et al. 2018; Martindale et al. 2006).

It is clear that psychological therapy should be included as part of routine axSpA care and may help patients better manage their disease symptoms and improve outcomes.

7.4 Role of Physical Exercise in Symptomatic Relief and Mental Health Improvement of Patients with AxSpA

European IMAS participants who engaged in physical activity reported a modest but statistically significant reduction in GHQ-12 score compared with participants who were inactive (mean GHQ-12 4.8 vs. 5.6; Mann–Whitney test p-value < 0.001). Furthermore, participants who engaged in physical activity were at a decreased risk of psychological distress (Table 7.4).

Table 7.4 Participation in physical activities and GHQ-12 cut-off point of survey participants
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All patients with axSpA should be encouraged to engage in exercise to help with symptomatic relief as well as for the well-documented beneficial effects on general mental health (Harvey et al. 2018; Heijde et al. 2017).

χ2 test p-value was 0.002 indicating an association between participation in physical activities and scoring above the cut-off point of GHQ.

7.5 Conclusions

  • A substantial proportion of European IMAS participants were at risk of psychological distress and had common psychological comorbidities such as sleep disorders, anxiety, and depression, highlighting the substantial negative impact of axSpA on psychological health.

  • Participants who were younger, female, single or separated/divorced, and those who had lower income were most at risk of psychological distress.

  • Psychological health was associated with disease activity, functional impairment, and spinal stiffness.

  • Psychological care is an essential component of the holistic medical management of axSpA.