Given the exploratory and multidimensional nature of the objective of the study, we considered the formation of focus groups to be the most appropriate technique. A typological framework was prepared to identify the profiles of the participants that would ensure a diversity of views. It included sex (a larger proportion of men than women), disease duration (at least 2 patients less than 5 years), age (at least 2 under 40 years) and a variety of occupations (active, retired, pensioners and persons who had never worked). To recruit the participants, we contacted the Spanish spondylitis coordinator (Coordinadora Española de Asociaciones de Espondiloartritis [CEADE]) and the Spanish League Against Rheumatism (Liga Reumatológica Española [LIRE]). The latter, in turn, contacted with local spondylitis associations, who ultimately got the volunteers in touch with the team. Prior to the formation of discussion groups, the patients signed a standard confidentiality document that explained that the conversation would be taped and that the data would, in addition, be published.

Each of the focus groups had a minimum duration of 1h, which could be prolonged to up to 2h if necessary, depending on the discourse. They were held for 2 consecutive days, in rooms that provided the usual requirements for groups of this type, with a neutral setting in terms of structural and symbolic matters. The interviewers were trained in qualitative methodology and followed an outline that reproduced the terms of the argument map. The gathering of information was over when the discourse had become saturated, that is, any further comments were redundant and offered nothing new. The discourse was taped and was later analyzed in terms of semiology with the aid of the Mind Manager© program.

The group discussion outline was prepared on the basis of a systematic review of factors that improve adherence to exercise in patients with rheumatic diseases (manuscript in preparation), and the survey for rheumatologists dealing with the role of exercise in SpA and in other rheumatic diseases.11 The review revealed controversy concerning demographic factors related to adherence and, consistently, to the importance of intrinsic and motivation factors.

While the groups were being configured, information was being gathered on the following aspects: (a) typology of exercises performed by the participants and what they understand to be physical activity, exercise and sport; (b) phases of coping with exercise or physical activity in SpA; (c) aspects that facilitate exercising; and (d) potential barriers.

The data were analyzed thematically with the help of the Mind Manager© program. The analysis consisted in identifying the elements that constituted the reality being studied, describing the relationships among them and summarizing the outcome by means of: (1) segmentation according to thematic criteria; (2) categorization depending on situations, relationships, opinions, feelings or some other grouping; (3) coding of the different categories, including (a) barriers, (b) facilitators and (c) other differing factors; and (4) interpretation of the results.

We recruited 11 patients among the 2 groups with the following profiles: 7 (64%) men, with ages between 30 and 70 years; 6 of them (57%) had a history of SpA of over 10 years. In all, 80% did some type of exercise or physical activity: either sports (swimming and biking), some type of gymnastics (yoga, Pilates, stretching, circuit training at home, etc.) and/or physical activity (brisk walking, jogging, running, dancing, biking, walking the dog).

The barriers included intrinsic and extrinsic barriers; each was assessed a posteriori to determine whether or not it could be modified from the outside (Table 1).

Fear of injury and of provoking more severe pain was repeatedly identified as one of the major intrinsic obstacles for performing physical exercise encountered by the patients. Pain comes to be a factor that affects them in their activities of daily living and, thus, exercising is not one of their priorities.

In general, disease activity, either as flares, fatigue or even depression, is identified as an intrinsic barrier. In fact, the inefficacy of drug therapy was seen per se as a barrier that led to the above events, although, in this case, it was considered an extrinsic barrier.

Previous negative experiences involving exercise are also an inconvenience for attempting it again. In most cases, these incidents included exercising or playing sports without supervision. This resulted in the patients being injured due to their lack of knowledge of the exercises that were most suitable for them; on some occasions, the negative experiences were associated with undertaking exercise routines that were not dosed in accordance with the individual's capacities (VI).

Within the extrinsic barriers, we point out the lack of coverage (accessibility) with interventions appropriate for the changing physical condition of the patients, or the unawareness of the existence of this circumstance. Some allude to the need to engage a good monitor to design an exercise plan in accordance with the situation and the preferences of each patient, and that ensures that the patient will not be hurt (V2).

On the other hand, the inclusion of exercise in the daily routine is complicated, and even more so, in the case of patients who feel alone and are often in a setting that is not favorable for exercising. This can occur because of the extrinsic barriers mentioned above, or because the people in the patient's circle do not regularly get involved in physical activity or sports. Those periods in which exercise is left “on hold”, either because of a disease flare, personal problems or vacations, make it difficult to maintain a routine, and motivation is discouraged. In this case, the cause would be a combination, or mixture, of extrinsic and intrinsic factors (V3).

We identified several facilitators of physical exercise, again classifiable as extrinsic and intrinsic (Table 2). On the one hand, extrinsic aspects were mentioned repeatedly in patient input. Knowledge, on the part of both the professional physician who provides guidelines for exercise, and that of the monitor who designs the work plan, seems to be a positive factor when it comes to this approach. Having a good monitor who adapts the exercises to the characteristics of each patient appears to be essential (V4).

Regarding knowledge, information has been identified as a key aspect. In general, patients considered that their physicians were not well-informed about exercise and the sports they could or could not participate in. Therefore, the latter did not inform the patients, or were unable to respond to their doubts.

On the other hand, patients showed that, to achieve good adherence, the crucial aspects were accessibility in terms of proximity, hours compatible with their workday and the quality of sports facilities (V5).

Regularity is an intrinsic–extrinsic factor (depending on the arguments employed) that is clearly identified as a facilitator (V6).

Finally, the social aspects of exercise were pointed out, as a way of forgetting about their disease and as a diversion (V7).

Concerning the intrinsic factors, the patients stated that active coping with the disease was a key facilitator for engaging in physical exercise (V8).

Starting to exercise right after receiving the diagnosis of SpA is also a facilitator. It makes it easier to include it in the daily routine and, above all, maintain it over the long term (V9).

Another factor that was pointed out was a good experience with exercising in the past. Those patients who had participated in some type of sport prior to the diagnosis found it easier to continue to do so, as they themselves knew the benefits of it (V10).

One of the groups identified an unexpected facilitator, that actually encompasses many of the facilitators, reinforcing the role of associations in facilitating exercise (V11).

One of the groups pointed out that, aside from providing companionship and the experience of others in the same situation, the associations can serve as a vehicle for a great deal of information. This information should deal with limits to exercising, especially in the initial phases of the disease, as well as the most appropriate types of exercise, the amounts, and the accompanying benefits and problems. On the other hand, associations can improve the access of patients to exercise and potentiate or facilitate regular exercising. The training of specialized monitors was even proposed to make use of the experience of the associations of patients in the design and adaptation of exercise programs (V12).

Finally, there were certain elements that aroused contrasting opinions among the individuals participating in the focus groups (Table 3).

Certain patients are overcome by the stress created by the situation and end up abandoning exercise, while others see it as a mode of getting away and increase the intensity (V13).

Finding the time is also a conflicting element. Regular physical exercise is difficult to reconcile with the vicissitudes of daily living for some patients. However, others acknowledge that the time utilized in exercising is gained through efficiency in other duties. The motivations of each individual and past experiences with exercise come in to play here (V14).

On occasion, health professionals prescribe exercise routines. Aspects like monotony, limited specificity or ambiguousness of the tables were comments from the participants and, in terms of their utility, if they are good, they can serve for moments when exercise is “on hold” (V15).

The cost of the activities can potentiate and, at times, is a restraint, provided we are talking about reasonable prices. Greater quality in exercising will always be accompanied by higher costs (V16).

Four phases of coping with exercise or physical activity have been identified in patients with SpA. In the first phase, at the commencement of the disease, patients are fearful after the medical diagnosis, probably due to the enormous amount of information they receive. We found 2 attitudes in the patients: those who refuse to exercise (V17) and those who decide to start participating in physical activity on their own. During this phase, patients are receptive and can understand that exercise has positive effects if things are explained well. That is the time to incorporate beneficial routines and, thus, information and support on the part of the person prescribing exercise will be critical elements to get patients involved in their own care (V18).

In a second phase, there can be 2 profiles: patients who, in general, see few results of the treatment, or those who see that, in them, the disease does not appear to be so severe, or who receive little reinforcement on the part of their attending physician, and stop exercising “You become over-confident and start loafing”; and those who continue to look on their own, or in patient associations, on how best to progress or adapt exercise to their disease.

In a third phase, which we can call the expert patient. These persons know what exercise implies, both in terms of its effect and in logistics. Again, there are 2 postures: that of relaxation and giving up, and that of active coping (V19). In this phase, health care professionals have little to say.

Finally, the fourth phase involves disease flares, although, in reality, they can develop at any time. Flares act like a trigger, or an opportunity, for engaging in exercise; patients mention that they become totally conscious of the utility of maintaining themselves active (V20).

The authors declare that the procedures followed were in accordance with the regulations of the relevant clinical research ethics committee and with those of the Code of Ethics of the World Medical Association (Declaration of Helsinki).

The authors declare that they have followed the protocols of their work center on the publication of patient data.

The authors have obtained the written informed consent of the patients or subjects mentioned in the article. The corresponding author is in possession of this document.