A total of 117 patients with AxSpA were enrolled (mean ± SD age 41.62 ± 11.54 years). The demographic data indicate a diverse group consisting of Polish subjects with diverse educational backgrounds. The majority (93, 79.5%) were employed, and there was a considerable male predominance (69, 59%). Hypertension was identified as the most common comorbidity (30, 25.6%), followed by osteoarthritis (21, 17.9%). Other comorbidities included Hashimoto thyroiditis and inflammatory bowel disease (each present in 5.12% of the surveyed population), and fibromyalgia (3.4%).

Diagnostic delay

The diagnostic delay, the average time from the onset of disease symptoms to the diagnosis by rheumatologist, was 5.5 years.

Awareness of disease subtypes

The data revealed a significant gap in awareness about subtypes of AxSpA, with nearly half of the respondents (49, 42%) were unaware of the distinction between radiographic and non-radiographic forms of AxSpA. While 33 (28.2%) understood this distinction, a considerable number (35, 29.9%) remained unsure, indicating a need for enhanced educational efforts to improve the understanding of AxSpA subtypes.

Physical activity patternsDistribution of regular versus irregular exercisers

Remarkably, 104 (88.9%) responders highlighted physical activity as a factor influencing their disease course, suggesting a unanimous perception of its importance. However, only 32 (27.35%) managed to exercise regularly (≥ 30 min, 2–3 times a week or more). The majority (70, 59.8%) were engaged in some form of physical activity, though irregularly, with 15 (12.8%) were not exercising at all (Fig. 1a).

Fig. 1

Analysis of physical activity patterns among AxSpA patients: exercise habits (a), barriers (b), workout types (c), and exercise performance methods (d)

Barriers to maintaining a physically active lifestyle

Out of 117 participants, 56 (47.9%) reported at least one barrier to maintaining a physically active lifestyle (Fig. 1b). Pain was identified as a primary deterrent to exercise by 32 (27.35%), 27 (23.1%) reported fatigue as one of the most significant barriers, and 17 (14.53%) mentioned lack of motivation to exercise. Notably, 12 (10.3%) stated that lack of time prevents them from exercising. A smaller number of respondents indicated that lack of knowledge or doctor’s recommendations on how to exercise correctly (8, 6.84%) and fear of exacerbating the disease or increasing pain (3, 2.6%) were barriers to their engagement in physical activities.

Types of workouts and exercise performance methods

The types of workouts diagram depicts a range of physical activities, pointing to solo activities and stretching as the most popular, followed by spine exercises and biking (Fig. 1c). The exercise performance methods diagram presents the respondents’ exercise preferences, such as exercising at home, followed by outdoor and gym activities (Fig. 1d). The majority of patients (93, 79.5%) preferred to exercise alone, while a smaller group (9, 7.7%) opted for group activities, and 15 (12.8%) did not engage in any form of exercise. The preference to exercise alone may reflect the need for convenience, comfort, and personal space. Biking, swimming, and fast walking were also popular, suggesting a preference for aerobic exercises adjustable to individual fitness levels.

Smoking

Although nearly half of the respondents (53, 45.3%) recognized smoking as a factor influencing their disease and well-being, many patients continued to smoke. In fact, 20 (17.1%) were current tobacco smokers, and 4 (3.4%) were e-cigarette users. A smaller percentage of respondents reported using both tobacco and e-cigarettes (2, 1.7%). This scenario highlights the gap between disease awareness and lifestyle choices, underscoring the importance of not just educating patients about the risks associated with smoking, including the progression of structural damage, but also supporting them in smoking cessation efforts.

Patient satisfaction with different aspects of rheumatology care

Figure 2 illustrates the distribution of patient satisfaction related to different aspects of rheumatology care in Poland. Each bar in Fig. 2 represents a different aspect of medical care, with segments indicating the number of responses for each satisfaction level: “Very (Extremely) Dissatisfied,” “Dissatisfied,” “Satisfied,” “Very (Extremely) Satisfied,” and “Hard to Say.”

Fig. 2

The distribution of patient satisfaction levels across various aspects of rheumatology care

The overwhelming majority of patients were satisfied (106, 90.6%) with their treatment effectiveness. The overall satisfaction also scored remarkably high at 94%. This trend extends to accessibility and quality of diagnostic services. Access to laboratory tests was reported as satisfactory by 103 (88%) respondents. Access to imaging tests showed a similarly positive response, with 108 (92.3%) patients reporting satisfaction levels from ‘Satisfied’ to ‘Very (Extremely) Satisfied’.

Areas with notable dissatisfaction or uncertainty

This survey identified critical areas where patient dissatisfaction or uncertainty was prevalent: 38 (32.5%) were uncertain, and 35 (29.9%) were dissatisfied with their access to rehabilitation services. For spa therapy, 63 (53.85%) reported uncertainty and 23 (19.7%) expressed dissatisfaction. Approximately one-fourth of the feedback indicated dissatisfaction or ambiguity about the treatment of disease flare-ups and non-pharmacological treatments. These data underscore the need for targeted service improvements to enhance patient satisfaction and overall care quality in rheumatology practices.

Patient access and demand for physiotherapy

Interestingly, 48 (41%) were examined or treated by physiotherapist or rehabilitation specialist and 67 (57.3%) did not receive physiotherapy in the last 12 months. The majority (67.5%) expressed a desire to receive a referral to physiotherapist or rehabilitation specialist. In contrast, only 17.95% of respondents were not interested in receiving the referral, and 14.53% remained undecided. This disparity between the low incidence of treatment and expressed interest in referrals highlights a gap in service provision and accessibility to rehabilitation.

Suggestions regarding better rheumatology care

Only 55 (47%) indicated satisfaction with current management practices, stating that “Nothing needs to be changed.” However, there remains a demand for enhanced patient-physician communication and patient education: 38 (32.5%) emphasized the importance of discussing the disease course with their doctor and receiving tailored advice. Twenty-nine (24.8%) highlighted the need to regularly monitor spine and sacroiliac joint mobility, advocating for more rigorous and routine physical assessments. The results also revealed a desire for more frequent follow-up visits (7, 6%), reflecting a call for increased interaction with healthcare providers.

Perception of AxSpA exacerbations

A significant number of respondents (47, 40.2%) proactively contacted their rheumatologist via email, SMS, or phone, while 29 (24.8%) called their rheumatology clinic registration to arrange an appointment. Twenty-seven (23.1%) patients preferred to consult their family doctor as an initial step. Notably, 12 (10.25%) managed exacerbations by increasing their NSAID dose. Beyond medical consultations, 4.24% of patients were engaged in exercises and an equal percentage seeked advice through social media or Google, indicating a reliance on both physical activity and online resources for managing symptoms. These insights point to diverse approaches to self-management and care-seeking behaviour among patients with AxSpA.

Teleconsultation use and preference

Only 27 (23.1%) utilized teleconsultations with rheumatologist in the last year (Fig. 3a). The majority (85, 72.65%) did not take part in teleconsultations. When asked about the prospect of replacing in-person consultations with teleconsultations, the majority (76, 65%) preferred to maintain in-person visits and only 8 (6.8%) supported the idea of switching to teleconsultations (Fig. 3b). Additionally, 33 (28.2%) were still uncertain about this substitution. Despite the growing availability of telehealth services, there remains a strong preference for traditional face-to-face interactions, possibly reflecting the nuanced and highly personalized nature of AxSpA care.

Fig. 3

The use of teleconsultations among patients with AxSpA in the last 12 months and their preferences for replacing in-person consultations with teleconsultations

Concerns regarding treatment side effects

TNF inhibitors were frequently used (61, 52.1%), followed by IL-17 inhibitors (32, 27.35%). Only a small subset were treated with JAK inhibitors (2, 1.7%). NSAIDs were widely used by responders (64, 54.7%). A variety of other analgesic medications were utilized: paracetamol (30, 25.6%), metamizole (6, 5.1%), and weak opioid analgesics such as tramadol (5, 4.3%). A smaller subset of patients also reported using anticonvulsant medications such as pregabalin and gabapentin (1.7%). A small number of patients reported using oral steroids (7, 6%). Concerns about side effects were significant, with 37 (31.6%) expressing apprehension regarding their current drug therapies, highlighting the need for continuous monitoring and patient education to mitigate these concerns.