Organisation and content of supervised group exercise for people with axial spondyloarthritis in The Netherlands

Axial spondyloarthritis (axSpA) is an inflammatory rheumatic disease that primarily affects the spine and sacroiliac joints, and is characterised by chronic back pain and stiffness that often decreases with exercise [1, 2]. Exercise is proven effective in reducing symptoms and increasing spinal mobility, cardiorespiratory fitness, and physical functioning of people with axSpA [3‐10]. The literature in particular demonstrates that supervised group exercise (SGE) is more effective in improving quality of life, spinal mobility, and patient global assessment than unsupervised, individual exercise [5, 10‐13]. However, it must be noted that the evidence supporting SGE in AxSpA is mostly based on studies that were published quite some time ago and the main focus of the interventions in these trials concerned joint mobility exercises [10, 14]. This contrasts with recent literature, suggesting that SGE for people with axSpA would ideally also include patient education and muscle strengthening and aerobic exercises, with the right frequency and intensity, that are personalised according to regular reassessments [6‐11, 15, 16].

The implementation of these new insights in current practice of SGE in axSpA, however, appears to be insufficient. In the Netherlands, the nature and contents of many of the SGE programmes for axSpA patients are still based on an intervention used in a randomised, controlled trial from a few decades ago [17]. In that period, an inventory of practice was made, finding that there were 31 SGE classes in the Netherlands, which all used land-based joint mobility and muscle strengthening exercises (100%), often combined with sports (84%) and hydrotherapy (72%) [18]. The SGE classes took place weekly, with an average duration of 95 min (range 50 and 155). Furthermore, the large majority of the supervisors were physical therapists (90%) and only few had had postgraduate education on SGE (8%) [18]. A recent study in four regions in the Netherlands where SGE for patients with axSpA is provided showed that current practice appears similar to the situation in 1991 [19]. That study suggests that SGE contents and dosage must be revised to meet current scientific insights. Additional knowledge regarding current SGE engagement, organisation, and content among people with axSpA from other studies appears to be scarce. Two Swiss studies report that 68 axSpA-specific SGE groups are organised by the Ankylosing Spondylitis Association of Switzerland, in which SGE is provided mostly on land, often complemented with hydrotherapy, on a weekly basis, supervised by a physical therapist and focusing on muscular strength and joint mobility [20, 21]. In the United Kingdom, it is reported that land-based SGE and hydrotherapy are organised by 74 and 65 branches from the National Axial Spondyloarthritis Society (NASS), respectively [22]. No information is provided on the specific contents or organisational characteristics of SGE for people with axSpA. Regarding overall SGE use, a recently published cross-sectional study on the engagement of people with axSpA in SGE found that, in the Netherlands and Switzerland, 9% and 30% of the respondents are attending SGE, respectively, and that these numbers are declining over time, while the average age of SGE participants is increasing [23].

Since detailed information on the actual provision of SGE for axSpA on the national level is missing, this study examines the current use, content, supervision, and organisational characteristics of SGE for axSpA patients in the Netherlands. This is a first step towards a revision of the content and dosage of SGE; a development which appears to be supported not only form a scientific viewpoint but from the patients’ perspective as well [19].

The questionnaire was returned by the board members of 67 of the 82 (82%) local patient associations. Forty-three (64%) of these 67 associations were involved in organising SGE for people with axSpA: 17/67 (25%) provided SGE specifically for axSpA and 26/67 (39%) for people with any RMD (not exclusively for axSpA). From all these 43 associations involved in organising SGE, a supervisor had completed survey Part Two on SGE contents and supervisor characteristics (n = 43). As shown in Table 1, axSpA-specific SGE (n = 17 associations) was offered to 56 groups, including a total of 684 participants, whereas SGE for any RMD (n = 19 associations; seven respondents did not provide these data) was offered to 167 groups, including 1940 participants.

As a first step towards evidence-based revision of the practice of axSpA-specific SGE, this cross-sectional study examined the organisation and contents of SGE for people with axSpA in the Netherlands using a survey among local patient associations. It was found that 17 out of 67 associations responding to the survey offered axSpA-specific SGE, with most programmes combining land-based exercises, sports, and hydrotherapy. Most supervisors lacked postgraduate education on RMDs and the application of intensity monitoring, patient education, periodic assessments, and personalisation, needed for optimising the dosage in particular of aerobic exercise, was rare.

When compared with a similar Dutch cross-sectional study from 1994 [18], it appears that little has changed over the last two and a half decades. Current practice in The Netherlands also appears to be in line with relatively recent studies on the delivery of SGE for patients with axSpA from Switzerland and the United Kingdom [20‐22]. In all, the focus is still mainly on joint mobility and muscle strengthening exercises, combined with sports and hydrotherapy, provided during once weekly sessions of relatively long duration.

These findings show that there is room for improvement, in particular regarding the provision of adequately dosed aerobic exercises [9‐11, 16, 26]. Recent literature suggests that especially aerobic exercise with high intensity is beneficial for people with axSpA [16, 27]. To ascertain the execution of aerobic exercise with adequate intensity, implementation of intensity monitoring as well as a more personalised approach are needed, with every participant undergoing a comprehensive assessment, setting of individual goals, and periodic evaluations [11]. Furthermore, recent recommendations from the European League Against Rheumatism (EULAR) prescribe aerobic exercise to be performed with moderate or vigorous intensity on at least 5 or 3 days per week, respectively [8]. Once weekly SGE is thus not sufficient to achieve this frequency, so there should at least be education and personalised advice on additional exercise and physical activity acquired throughout the week. As patient education is currently only provided in less than half of the programmes, this element requires attention.

Although the data were collected in 2016, they constituted the basis for a pilot implementation project that was done in 2017 and 2018 in four regions (out of 17 regions providing axSpA-specific SGE and out of a total of 43 regions providing SGE for any RMD) [19], which has shown that it is highly likely that the situation has not changed since 2016 (apart from the four pilot regions). After all, from close contact with the Dutch Arthritis Society and many local patient associations during this project, there were no signs of any changes after 2016. Moreover, the pilot implementation showed to be hampered by various barriers. The SGE enhancements are therefore currently still warranted and a desired future action is to engage with local patient associations and other stakeholders to jointly examine how to cope with potential barriers during future implementations.

To implement the proposed SGE enhancements, the supervisors require adequate education. However, similar to a few decades ago [18], the large majority of SGE supervisors in this study consisted of physical therapists without a postgraduate education on RMDs. Physical therapists’ knowledge on RMDs is an important facilitator for the implementation of high-intensity aerobic exercise [21] and is one of the core competencies of health professionals in rheumatology [28]. Improving the knowledge of physical therapists could be hampered by the limited availability of postgraduate education on RMDs in many European countries, in particular with a specific focus on exercise and axSpA [29]. A number of (online) courses for health professionals addressing axSpA in English are available, such as those developed by the EULAR [30] or by the National Axial Spondyloarthritis Association (NASS) from the United Kingdom [31]. However, lack of English language skills could be a barrier for participation among health professionals in many non-English speaking countries [29]. Fortunately, in the Netherlands, recommendations for physical therapists on exercise and axSpA recently became available [32] as well as a course on implementing these recommendations [33].

In addition to availability of appropriate education, it is also important that SGE supervisors are motivated to participate in such courses and that patient associations use postgraduate education on RMDs as a selection criterium when recruiting supervisors. In this study, only a minority of the supervisors had postgraduate education and less than 30% of associations used it as a selection criterium. However, it is likely that patient associations currently limit the demands on their supervisors, because the payment for supervising SGE is probably lower than for regular therapy (personal communication). Limited funding could be the main obstacle, since funding was the SGE barrier mentioned most often by the boards of the patient associations. Funding mainly exists of contributions from members themselves and from the Dutch Arthritis Society. Only a few associations have direct agreements with health insurances. When implementing the SGE enhancements, this barrier should be taken into account and suitable payment of SGE supervisors should be provided.

When implementing the suggested SGE enhancements, the patients’ perspective should be accounted for. One study, examining the perspective of axSpA-specific SGE participants towards current SGE and the proposed SGE enhancements, found that the majority of axSpA patients was satisfied with the current axSpA-specific SGE, but also agreed with intensity monitoring, periodic assessments, and exercising more frequently [19]. Half of the participants were in favour of education and a large majority found specialised supervision highly important. However, that study also showed that the majority of SGE participants in the Netherlands had a relatively high age and participated in SGE for a long time [19]. This is in line with the current finding that recruiting new and younger SGE members is a challenge mentioned most often (besides funding) by the associations’ boards. To attract younger axSpA patients, it may help to implement more education on self-management, as was found in one study using focus groups [34], or by exploring and using technological possibilities such as web-based home exercise programmes [35], which provide more flexibility in exercise times, costs and distance than traditional SGE sessions [36]. Furthermore, a study among axSpA patients registered in a hospital in the United Kingdom found that over half of them were not familiar with the NASS [37]. To recruit more (young) SGE members, it might help to increase awareness regarding associations organising axSpA-specific SGE.

There are three study limitations to be mentioned. First, using a non-validated survey, the data could be affected by various forms of bias, including social desirability bias regarding the contents of SGE. To limit the risk of this bias, it was made clear to participants that the survey was meant to make an inventory of the current SGE situation and to assess the needs to improve it, rather than to make a judgement of the quality of the SGE they provided. Moreover, as this study included a survey among both board members and the SGE supervisors, it is expected that the combined responses provide a realistic picture of the situation. Second, there were no specific questions in the survey about providing home exercise advice. Advice on home exercise is important for achieving adequate exercise frequency and findings from another study suggest that it is currently lacking in axSpA-specific SGE [19]. Finally, this study only examined SGE organised by local patient associations affiliated with the Dutch Arthritis Society and axSpA-specific SGE organised outside of these associations were not included. However, it seems unlikely that axSpA-specific SGE exists beyond these associations in the Netherlands. As this study showed a high response rate among the local patient associations (82%), the results may be well generalisable to all axSpA-specific SGE in the Netherlands.

In conclusion, most SGE programmes for patients with axSpA in the Netherlands contained a combination of land-based exercises and hydrotherapy, with the main focus on joint mobility, muscle strength, and sports. To meet current scientific insights, there should be more focus on adequately dosed aerobic exercises, by implementing intensity monitoring, patient education, periodic assessments, and exercise personalisation, and by providing and promoting postgraduate education for supervisors.