Due to the pain, fatigue, and loss of mobility associated with their disease, patients with axSpA often struggle to meet the demands of employment, which can lead to higher rates of unemployment, sick leave (absenteeism), and impairment while at work (presenteeism) compared with the general population (Boonen et al. 2010, 2001; Mau et al. 2005; Healey et al. 2011). As disease symptoms often begin in the third decade of life and axSpA is a chronic life-long illness, restrictions in work participation can have substantial short- and long-term implications for both patients and society as a whole (Sieper and Poddubnyy 2017; Castillo-Ortiz et al. 2016; Boonen 2002).

Age, disease duration, structural damage, and physical functioning have been shown to be contributing factors to work disability in patients with axSpA (Boonen et al. 2010, 2001; Macfarlane et al. 2018). Understanding what drives reductions in work productivity in patients with axSpA allows patients at risk to be identified and managed accordingly.

11.1 Employment Rates in European IMAS Participants Compared with the European General Population

While more than half of participants were employed at the time of the survey, one out of five survey participants were on sick leave (n = 596) (Fig. 11.1).

Fig. 11.1
figure 1

Employment status of participants (N = 2,704). Data are based on responses to the question ‘What is your current employment status?’; options were: ‘employed’, ‘temporary sick leave’, ‘permanent sick leave’, ‘retired’, ‘early retirement’, ‘unemployed’, ‘homemaker’, ‘student’, ‘other’, ‘do not know’.

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Both male and female participants had lower employment rates than the overall European Union population (as reported in the Eurostat database) (Eurostat 2018) (Table 11.1). This highlights the significant negative impact of axSpA on employment prospects.

Table 11.1 Employment rate by sex compared with European general population (N = 2,704)
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These results contrast in part with those of a prior review of European studies in patients with AS, which suggested that employment rates were significantly lower for men with AS, but not for women, when compared with the general population (Boonen 2006). Variations in the impact of social security provision and labor market conditions on men and women were noted as potential reasons for discrepancies in how AS impacts employment between sexes. Nevertheless, the employment rates of men and women with axSpA were affected equally in the IMAS survey.

The most common occupations of employed survey participants were jobs requiring university qualifications, and skilled non-manual and executive positions (Fig. 11.2). Professions requiring manual labor were less frequently reported, as would be anticipated given the nature of the disease and its associated limitations. Common symptoms of axSpA (pain, fatigue, reduced physical function and mobility) impact an individual’s ability to undertake physical activity (Strand and Singh 2017), and physically demanding jobs have been linked to worse progression of axSpA (Ramiro et al. 2015).

Fig. 11.2
figure 2

Distribution of employed survey participants by type of occupation (N = 1,070). Data from France are not included in this figure as different categories were used for ‘occupation’ in France

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Almost half (45.8%) of the survey participants reported that axSpA had influenced their job choice in some respect, illustrating the profound cumulative impact that axSpA can have on an individual’s life and over their ability to have control over their future career options.

11.2 Work-Related Issues as a Result of axSpA

Two-thirds (67.8%) of employed survey participants indicated that they had suffered issues with work related to axSpA in the prior 12 months (Garrido-Cumbrera et al. 2020). Work-related issues were defined as the following: ‘I asked for some days off/leave of absence’; ‘I took sick leave’; ‘I reduced my working hours’; ‘I missed work only for the time my doctor's appointment took’; ‘it has been difficult for me to fulfil my working hours’; ‘I have occasionally changed my work shift’; ‘my professional life has suffered (e.g. missed promotion)’; ‘I had to give up my previous job’; and ‘other’.

The most common work-related issue as a result of axSpA was the need to take sick leave, followed by difficulty in fulfilling working hours and missing work for doctor’s appointments (Table 11.2). These data illustrate that both absenteeism (absence from work due to sick leave) and presenteeism (impairment while at work) were common in participants.

Table 11.2 Work-related issues as a result of axSpA reported by survey participants with a work-related issue in the prior 12 months (N = 555–870)
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BASDAI scores were statistically significantly higher in participants with versus without the work-related issues surveyed, except for missing work for doctor’s appointments (Supplemental Fig. 11.1), but none of the differences were large enough to be clinically significant (Pavy et al. 2005). These results are consistent with those from previous studies in patients with axSpA linking disease activity with absenteeism, presenteeism, and work productivity loss (Lunteren et al. 2017; Hooge et al. 2016).

In addition, the level of functional limitation (limitation in independently performing the routine activities of daily living) on daily activities was higher in those participants who faced work-related issues than in those who did not, even for missing work for doctor’s appointments (Supplemental Fig. 11.2). Thus, participants with higher functional limitation experienced more issues at work. These observations are consistent with those in previous studies that have shown a relationship between loss of work productivity and decreased physical functioning (Hooge et al. 2016; Boonen et al. 2002; Ward and Kuzis 2001; Haglund et al. 2015; Espahbodi et al. 2017).

Participants experiencing work issues also scored higher in GHQ-12 compared with those not suffering from these issues, except for missing work for doctors’ appointments and changing work shifts (Supplemental Fig. 11.3). In previous research, both absenteeism and presenteeism have been associated with higher levels of anxiety and depression in work environments (Espahbodi et al. 2017). The association between work issues and psychological distress identified here emphasizes the need to measure and better understand the psychological impact of work issues in axSpA.

11.3 Relationship Between axSpA and Sick Leave

In total, 304 participants were on temporary sick leave at the time of the survey. The proportions of participants in a particular occupation that were on temporary sick leave were generally higher for unskilled workers and positions requiring manual work (Table 11.3). Although working in the armed forces or construction would generally require physical labor, no participants in these occupations were on temporary sick leave and only one of the 16 participants working in agriculture was on temporary sick leave; however, as only a small number of participants were in these positions it is possible that they were patients with less severe disease or that they were working in office-based positions. On average, survey respondents on temporary sick leave spent 7 months out of work (mean length of temporary sick leave in prior 12 months = 6.98 months; SD = 4.13; N = 255).

Table 11.3 Distribution of survey participants who were employed or on temporary sick leave by type of occupation (N = 1,283)
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Nine out of 10 survey participants who were on temporary sick leave declared that their absence was a consequence of axSpA (Fig. 11.3).

Fig. 11.3
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Participants whose temporary sick leave was due to axSpA (N = 296). axSpA axial spondyloarthritis

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In total, 292 participants were on permanent sick leave at the time of the survey. Seven out of eight survey participants considered their permanent sick leave to be a consequence of having axSpA (Fig. 11.4). As both temporary and permanent sick leave were self-reported (with no definition of each term provided) it is possible that participants differed in their interpretation of these terms. However, of the 167 participants who stated their duration of permanent sick leave, 136 (81.4%) had been on sick leave for the full 12-month period surveyed.

Fig. 11.4
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Participants whose permanent sick leave was due to axSpA (N = 327). axSpA axial spondyloarthritis

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These results illustrate the substantial impact that axSpA places on the ability of an individual to attend work (absenteeism). A previous study conducted in 72 patients with AS in the Netherlands found that 73% of all episodes of sick leave and 80% of all days of sick leave were attributable to AS, which is in broad agreement with the data presented here (Boonen et al. 2010). In the same study, 7.2% of official working hours were lost due to AS-related sick leave, at an estimated cost of €2,923 per patient per year, highlighting the personal and societal impact of the disease (Boonen et al. 2010).

11.4 Relationship Between axSpA and Unemployment

In total, 205 participants were unemployed at the time of the survey. Two-thirds of the participants who were unemployed declared that axSpA was the cause of their unemployment (Fig. 11.5). On average, unemployed survey participants had been without work for more than 10 months in the last year (mean length of unemployment in prior 12 months = 10.10 months; SD = 3.58; N = 121).

Fig. 11.5
figure 5

Participants who reported being unemployed due to leaving or losing their jobs because of axSpA (N = 196). axSpA axial spondyloarthritis

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Three out of four participants declared that axSpA was an obstacle when looking and applying for a job (Fig. 11.6). Specific reasons for this were not captured in the IMAS survey, representing an important avenue of future research.

Fig. 11.6
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Participants who experienced difficulties finding a job due to axSpA (N = 2,071). axSpA axial spondyloarthritis

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A previous study conducted in 570 patients with AS in the UK found that 43% of patients who were of working age were unemployed (Cooksey et al. 2015). AS patients retired 9.5 years earlier than the general population and 10.2 years earlier than the usual retirement age for their specific occupation, with 74% citing AS as the main reason for early retirement (Cooksey et al. 2015). A greater appreciation of the impact of unemployment in axSpA and development of interventions to help keep individuals with axSpA in productive work are therefore vital for reducing the costs of the disease to both patients and society as a whole.

Participants who were unemployed or faced difficulties gaining employment reported significantly higher disease activity (BASDAI; p < 0.001 for both), functional limitation (Functional Limitation Index; p = 0.007 and p < 0.001, respectively), and psychological distress (GHQ score; p < 0.001 for both) compared with those participants without such challenges (Supplemental Figs. 11.4, 11.5, and 11.6).

These results are consistent with previous studies on this topic. In a UK study, poor function and depression, although not disease activity, were associated with unemployment in patients with AS (Healey et al. 2011), while in a separate Dutch study, both disease activity (BASDAI) and function (BASFI) were predictors of adverse work outcome over a period of 12 years (Castillo-Ortiz et al. 2016). Aside from the impact of axSpA on mental health and the resultant potential difficulties in finding and retaining work for affected individuals, not being in work has a relatively well characterized detrimental effect on mental health itself (Breslin and Mustard 2003). This further highlights the burden of disease in axSpA and the importance of devising steps to ensure that affected individuals find and remain in work.

11.5 Conclusions

  • Employment rates were lower in European IMAS participants than those expected in the European general population.

  • Both absenteeism (absence from work due to sick leave) and presenteeism (impairment while at work) were common.

  • Almost all participants on temporary or permanent sick leave reported that their sick leave was related to axSpA; most also felt that axSpA was an obstacle when looking for and applying for work.

  • Disease activity (BASDAI), functional limitation (Functional Limitation Index), and psychological distress (GHQ score) were higher in participants who were unemployed or faced difficulty gaining employment.

  • A greater appreciation of the impact of axSpA on work productivity and development of interventions to help individuals with axSpA remain in productive work are vital for reducing the costs of the disease to both patients and society as a whole.