Patients with axSpA are likely to live with a range of hopes, such as retaining a good quality of life and normal social and physical functioning, and fears, including a fear of suffering, losing autonomy, and being a burden on relatives, relating to their disease (Garrido-Cumbrera et al. 2017; Gossec et al. 2015). Addressing these needs is an important consideration when designing appropriate treatment strategies for axSpA, particularly in light of the latest treatment recommendations, which advocate a shared decision-making process between patients and clinicians, including co-defining treatment goals (Heijde et al. 2017; Smolen et al. 2018).

12.1 Fears Reported by European IMAS Participants

The most frequently reported fears among survey participants were disease progression (32.9%), suffering pain (30.5%), loss of mobility (30.0%), and loss of independence/disability (29.2%) (Fig. 12.1). These findings are similar to those reported in another qualitative study in France which found that patients with axSpA most commonly feared suffering loss of autonomy and mobility and becoming a burden for relatives (Gossec et al. 2015).

Fig. 12.1
figure 1

Participant fears related to axSpAa (N = 2,435). axSpA axial spondyloarthritis, SpA spondyloarthritis. aIn all countries except France, fears were collected as free text responses

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Accordingly, the two most frequently reported hopes, halting disease progression (32.5%) and eliminating pain (30.7%), mirrored the most common fears (Fig. 12.2). Participants also expressed their hopes to obtain effective treatment (23.3%) and improve quality of life (22.0%). These findings are broadly in agreement with those reported in previous studies (Kiltz et al. 2016; Berenbaum et al. 2014), although it is notable that certain hopes reported previously, such as improving sleep quality, reducing fatigue, and improving motivation, were not frequently reported in the IMAS European survey (Kiltz et al. 2016; Berenbaum et al. 2014). The reason for this discrepancy is unclear but may be due to differences in study design, specifically the use of free text responses versus established multiple choice categories.

Fig. 12.2
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Participants’ Hopes About axSpAa (N = 2,435). axSpA axial spondyloarthritis. aIn all countries except France, hopes were collected as free text responses

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The core set of fears and hopes reported in the IMAS survey and previous studies may reflect unmet needs and key gaps in the information given to patients about their disease, its outlook, and its management. Optimal axSpA management should incorporate education for patients to minimize misconceptions, clarify treatment expectations, ensure patients feel supported, and ultimately improve health outcomes. As several factors, including the patient–physician relationship and treatment adherence, may affect axSpA-related hopes and fears (Gossec et al. 2018), it is critical for patients to share their thoughts with their physician to ensure the best possible management of their disease.

12.2 Treatment Goals for Patients with axSpA

The treatment goals most commonly reported by the European IMAS survey participants were to eliminate or reduce pain (28.6%) and improve mobility (19.3%; Fig. 12.3). Improved management of pain has previously been highlighted as a key treatment priority of patients with axSpA (Kiltz et al. 2016; Berenbaum et al. 2014). Given that improved mobility (a treatment goal for nearly one in five patients) correlates with improved quality of life (Huang et al. 2017), it is interesting that the proportion of participants who stated that improving quality of life was a treatment goal was relatively low. This may reflect variation between participants in their interpretation of the term ‘quality of life’.

Fig. 12.3
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Participant treatment goals relating to axSpAa (N = 1,927). axSpA axial spondyloarthritis. aTreatment goals were not collected in the survey for France

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Some of the treatment goals reported by participants were inconsistent with their hopes and fears. There are several possible explanations for this. For example, some participants may not have considered their hopes as being realistic treatment goals; this highlights the importance of patient–clinician discussions of fears, hopes, and treatment goals in order to improve education and facilitate shared decision making (Heijde et al. 2017). Accordingly, participants may also have reported their treatment goals as being those suggested by their clinician rather than what they personally believed. The results may also have been affected by ‘respondent fatigue’, a term used to describe a situation where survey respondents become ‘tired’ of answering questions, particularly when they appear to be asking the same thing several times; some participants may therefore have reported something as a treatment goal then not thought it necessary to state it again when reporting fears or hopes later in the survey. Finally, the use of open versus closed questions in the study design allowed discrepancies such as these to arise.

12.3 Patient–Clinician Communication is Important for Optimal Disease Management

As indicated in the ASAS-EULAR recommendations for axSpA management, shared decision-making requires patients to be educated about their disease and treatment options to enable a collaborative approach to defining an appropriate treatment goal (Heijde et al. 2017; Smolen et al. 2018). However, more than one-third of IMAS participants (36.8%) had not talked with their managing physician about their personal treatment goals (Fig. 12.4). This represents a key area where improvement is required.

Fig. 12.4
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Communication of personal goals to physician (N = 2,630)

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The hopes and fears reported by European IMAS participants were generally aligned with medical priorities and guidelines highlighting the importance of maximizing health-related quality of life (Heijde et al. 2017). Current guidelines recommend that axSpA treatment should be individualized according to the current signs and symptoms along with characteristics such as comorbidities and psychosocial factors (Heijde et al. 2017). As many of these factors are only known to the patient, improvements in patient–clinician discussions may allow the clinician to offer the most appropriate education/advice and potentially treatment adjustment. Clinicians also need to be encouraged to be transparent with patients and acknowledge areas of uncertainty within axSpA management due to lack of evidence.

12.4 Conclusions

  • Survey participants’ most common disease-related fears were disease progression, suffering pain, and loss of mobility. Nevertheless, they hoped to halt disease progression, eliminate pain, obtain effective treatments, and improve quality of life.

  • These insights into what is relevant for patients may reflect unmet treatment needs and key gaps in the information given about their disease, its outlook, and its management that could be addressed through improved education.

  • One out of three participants reported that they had not talked to their clinician about their personal treatment goals.

  • Patients with axSpA may achieve better health outcomes through adjusting therapy with an aim of achieving a specific treatment goal (Smolen et al. 2018); proactive and transparent discussions of expectations and treatment goals between HCPs and patients should be encouraged to enable effective shared-decision making and the design of individualized treatment strategies that provide optimal management of the disease.