Experiences and perspectives of patients with post-polio syndrome and therapists with exercise and cognitive behavioural therapy

Most patients participated in the trial for the purpose of science (quote 1). They had modest expectations of the CBT. Most of these patients hoped to learn to become more satisfied with the situation and their disabilities (quote 2). A substantial group was sceptical about the contribution to their physical and mental state (quote 3). Some patients had preferred to be randomized to the ET over CBT; those patients did not see how talking about their problems would improve their physical problems and fatigue (quote 4). One patient was, however, glad to be randomized into the CBT. She hoped to become better able to accept her illness (quote 5).

Although most patients did not experience a decrease in fatigue after CBT (quote 6), most experienced the CBT as valuable. This was due to other physical and/or mental improvements resulting from the therapy. Physical improvements included a better use of energy during the day (quote 7), an increase in the possibility to do some physical activities for a longer period (quote 8), less sleeping during daytime and taking more rests (quote 9).

On a mental level, patients felt considerable and more improvement than expected beforehand (quote 10). Some reported they were, due to the CBT, better able to accept their disabilities (quote 11), whereas others were more resigned with their emotions (quote 12). Considering the self-esteem, patients indicated they felt more assertive, dared better to stand up for themselves and attached less importance to other peoples’ opinion. This gave them a feeling of more freedom and the possibility to be themselves (quote 13). Patients considered the effects of the CBT to be long lasting (quote 14).

Some psychologists had, beforehand, reservations about the suitability of the protocol for the CBT. The focus of the protocol was on fatigue, whereas psychologists pointed out that it would be rather difficult to reduce it. They described fatigue as a complex issue which is hard to improve (quote 15). Others, however, were familiar with the patient group and had more positive expectations about the possibility to reduce fatigue. They felt the fatigue could be reduced as patients would become more aware of their physical abilities (quote 16). Two psychologists who had not worked with people with PPS before and found it, therefore, difficult to explicate their expectations.

Overall, the therapists were moderately positive about the CBT. Most psychologist noticed improvement in some of their patients; these patients were better able to accept their disabilities (quote 17). Some patients were positively surprised by their physical abilities as a result of graded activity increase which led to a positive experience of the CBT (quote 18). However, all therapists also experienced some difficulties with the protocol and the patient group. A frequent barrier to apply CBT, was the lack of perceived distress of the patients. All psychologists highlighted that most patients did not experience specific distress from the fatigue, nor had they needs for support at the beginning of the CBT. The fact that patients had high pre-intervention scores on the CIS fatigue questionnaire did not by definition imply a feeling of distress (quote 19). Even though all patients scored 35 or higher on the CIS fatigue questionnaire, most of the patients felt no need for a therapy for their fatigue; they did not experience the fatigue as problematic (quote 20).

Motivation was stressed across psychologists as being key to the effect of the therapy. In general, the psychologists described a low intrinsic motivation of the patients for the CBT (quote 21). Despite the lack of motivation at the beginning, most patients followed the therapy until the end. Psychologists sometimes had to deviate from the protocol, for example by trying to shift the focus to other aspects of the illness experiences, by focussing less on activity increase or by offering patients a follow up appointment (quote 22). Over the course of the therapy psychologists often noticed an increase in motivation of the patients (quote 23).

Another difficulty with the intervention for some psychologists was their lack of familiarity with the diagnosis sometimes made it more difficult for the psychologists to treat the patients, as they were unsure about the physical possibilities of the patients (quote 24). However, the vast majority were treated by therapists who were familiar with the patient group.

One of the psychologists had missed the opportunity to combine the CBT and the ET; a combination of both therapies could have done more justice to both interventions (quote 25) (Table 1).

As for the CBT, patients’ primary motivation to follow the ET was for the purpose of science. However, patients described some specific expectations of the ET such as learning their physical limits (quote 26) or improving their physical state (quote 27).

Most patients (n = 7) described some physical improvement due to the ET, such as increased muscle strength, weight loss or increased endurance. Furthermore, a couple of patients (n = 3) highlighted the fact that they were, due to the therapy, more aware of their limitations, resulting in a better distribution of their energy (quote 28). However, these physical improvements were perceived as a short-term outcome, which often had faded shortly after finishing the ET which did not outweigh the effort of the therapy. In general the patients did not experience decrease in fatigue (quote 29).

An increase in self-esteem and self-acceptance was mentioned by some patients as improvements on a mental level. This was sometimes the result of the ET itself, and sometimes of the conversations patients had with peers in the group session. The contact with peers helped patients to better accept their disabilities (quote 30). The ET led in some cases to an increased confidence of patients about their bodies, resulting in a rise in physical activities (quote 31).

All patients described the therapy as hard. The physical effort, the fact that cycling was often experienced as boring, and the time investment were stressed by the patients as being key to the difficulty of the therapy (quote 32) The time-investment made it hard to complete the intervention and sometimes led to drop outs (quote 33).

Physiotherapists expected the ET mainly to result in an increase of endurance of the patients. They were, however not sure whether this would result in a decrease of fatigue (quote 34). Beforehand, the physiotherapists had reservations about the possibility to establish an improvement in muscle strength considering the low frequency of the muscle strengthening exercises. Some physiotherapists expected an increase in the confidence about the physical abilities of the patients (quote 35).

Increased muscle strength was noted in some patients by the physiotherapists (quote 36). Besides, therapists identified some other gains from the therapy, such as learning how to train in the correct way and a gain in self-esteem of some patients. Beside these positive aspects, the therapists also described some difficulties with the therapy. Over-achievement was stressed by the therapists as a risk for this specific group of patients (quote 37). Besides, therapists felt that a lot of experience was needed to handle the protocol right. This was considered a downside of the intervention by experienced as well as less experienced therapists. For some physiotherapists it was difficult to stick to the protocol, some gave additional advice about the use of energy during the day although this was not included in the protocol (quote 38) (Table 2).

This study was executed parallel to a larger RCT. The main findings of our study are in line with the results of the quantitative study, as both show that patients did not point out a decrease in fatigue [9]. Our study shows, however, that patients experience benefits on self-esteem and acceptance. This is remarkable, as the quantitative study showed no increase on general self-efficacy (measured with the Dutch version of the Self-Efficacy Scale, ALCOS-16) [9] or disease acceptance (measured with the acceptance subscale of the Illness Cognitions Questionnaire, ICQ [9]. Differences between the quantitative and qualitative study might be the result of the different aims of both studies. Quantitative research is designed to test hypotheses, determine whether an intervention is leading to improvements on specific determinants. Qualitative research offers insight into emotions and experiences of people, to determine what people experience, how they feel and why. Therefore, both types of research gain in principle different kinds of information, which can lead to different outcomes. Former studies also show that differences between interviews and self-reported questionnaires can occur, even when both methods address the same concepts. Fairburn et al (1994) made a comparison between an interview and a self-reported questionnaire for people with an eating disorder and found that both results differed on some core features [18]. The differences in outcome between our qualitative study compared to the quantitative study could have multiple reasons. It is possible that the used questionnaires (ALCOS and ICQ-acceptance) were not sensitive enough for this patient group, as both questionnaires are not disease specific. Especially more complex features, such as self-esteem and acceptance, show discrepancies between interviews-based measures and self-report questionnaires [18]. It is possible that patients did objectively not increase their activities, but that the patients subjectively feel more satisfied with the way they execute activities. This would not be measured in the questionnaire, but could explain the positive experience with the interventions . Another possible explanation is that the participants of the interviews focused on aspects they thought the interviewer wanted to hear (socially acceptable answers) [19].

Beside our study, few qualitative studies addressed the experiences with CBT of people with physical problems like low back pain or fibromyalgia [16, 17]. None of these studies focused on people with PPS. Most studies that paid attention to the patients’ experiences focused on mental health problems, like depression or psychosis [20, 21].

The results of our study show that most PPS patients had low expectations and did not have a need for support or intrinsic motivation for the therapy when they started the CBT. This is a well-known phenomenon in clinical studies [22]. Different determinants exist for patients to take part in a clinical study. In this RCT patients seemed to have high altruistic motivation, which could have biased the outcome of this trial [23]. It may explain the absence of improvement in some patients since intrinsic motivation is an important factor in outcome-oriented treatments such as CBT [9].

The results of the current study show that patients experienced the ET in general as (very) intensive. However, patients did report a (short term) increase of endurance and muscle strength and some patients described an increased self-esteem after the ET. These results were not supported by the quantitative findings of the RCT [9] which showed no increase in endurance, muscle strength or daily activity. As for the CBT, such differences between quantitative measurements and qualitative experience are more common and could be the result of the low sensitivity of the tests [18] but could also be the result of socially desirable answers during the interviews or focus groups [19]. Both focus groups and individual interviews have a risk of conducting socially desirable answers. Triangulation of different research methods (focus groups, interviews, observations, questionnaires, et cetera) can reduce the risk of this bias [24]. In interviews, the risk of “groupthink” and socially accepted answers is lower than in focus groups [25].

An important finding of our study is that some patients were not able to combine their daily activities with training three times a week. This is in line with other studies that stressed the importance of the ability to incorporate the training in one’s everyday life [26‐28]. If the therapy is very time demanding or it does not fit into the daily routine, patients become less motivated and sometimes abort exercising. Besides, some patients did experience the ET as boring, lacking any stimulating factors, such as enjoyment of the therapy or signs of progress, of the training. This might also explain their low satisfaction with the ET. Such ‘intrinsic motivational factors’ are important factors for program completion [26].

In general, the group training was experienced as positive; it was perceived as valuable to talk to peers. Dodd et al (2006) describe that people with MS also benefit from a group training. Individual home training requires more discipline and might therefore be more difficult for people. Although some patients did drop out, the completion of the program was rather high. This might has to do with the high motivation of patients to participate in the trial in the first place The will of patients to finish the program in the interests of science can be quite strong [26, 28].

To prevent muscular overload, feasibility of the training schemes was weekly checked by one of the therapists by reading out the heart rate monitors and checking the log books. When necessary, adjustments to the training schemes were made. However, one of the main difficulties of the physiotherapists was to avoid the participants from overachieving during the physical training. The risk of overachievement might be specifically true for people with PPS, as they are known as over-achievers in different aspects of their live [29].