We found that patients who received support for PA during the HSCT care period were significantly more physically active than patients who received standard care. PASG patients were less bedridden, spent more time sitting, and performed more physical activities than SCG patients. PASG patients expended more METs than SCG patients. In addition, patients who received support did not experience worsening fatigue from admission to discharge and had a clinically meaningful better HRQoL after 6 months compared with those in standard care. However, the PASG included more patients undergoing a tougher allogeneic HSCT, compared with the SCG, limiting the possibilities to draw firm conclusions regarding the benefits of the PA support.
It is a challenge to motivate patients going through HSCT to be physically active during the isolation phase. Motivation primarily comes from a readiness to change something in life, but it is our experience that many people undergoing HSCT because of a serious and potentially life-threatening disease need all their energy just to cope and accept the situation. Despite this, studies have shown that it is possible for these patients to increase their levels of PA and benefit from this. A recent meta-analysis confirmed that early PE might help prevent decline in muscle strength arising from immobility and prolonged bed rest in HSCT patients [32]. In the late 1990s, Dimeo et al. proposed a bicycle made for bedridden patients [11], while other studies have randomised patients to standard care or daily exercise programmes encompassing a wide variety of tools, such as bicycles and strength training equipment, to increase PA during hospital stays [12, 13]. A single-blinded RCT using a 6-week strength training programme showed that members of the training group improved or maintained their status from baseline to after intervention compared with those in standard care [4] and the authors concluded that there was a need for developing uncomplicated exercise interventions to fit into clinical practice. Our study aimed to meet this challenge by using a clinical setting. We found that it is possible for patients to be physically active using simple tools and exercise programmes in a standard clinical setting. To succeed, we believe that advice, goalsetting, and follow-up time are crucial, and our results suggest that it may be enough to improve physical fitness before a HSCT, although further research is needed. The activity diary and individual goalsetting are simple and appreciated tools for encouraging HSCT patients and have been used in previous studies, but most often in the outpatient setting [33]. All patients in our study used the diary as instructed and the daily follow-up inspired them to continue with PA throughout their hospital stay. The most important instrument could be the daily follow-up visits by the SN, who used a MI approach to inspire and evaluate goals, give simple advice and challenge the patients. Tarasenko et al. [34] found that healthcare providers’ recommendations are associated with higher levels of leisure-time aerobic PA among cancer survivors; using a MI approach makes this even more effective [21].
Although we did not expect any major baseline differences between the groups, the PASG patients walked further in the 6MWT before treatment start than the SCG patients. As the PASG contained more patients undergoing allogeneic transplantation relative to those undergoing autologous transplantation, we believe that a likely contributor to this difference was the verbal advice given to the patients in the PASG pre-transplantation setting about being physically active. The higher frequency of myeloablative regimens in the PASG compared with the SCG might explain the reduced capacity at discharge, but the 6MWT distances of PASG patients at discharge were close to those of SCG patients at the start. An important finding was that we managed to support HSCT patients to achieve the same level of physical capacity as patients in previous studies, comparing 6MWT before and after HSCT [35, 36].
Based on the findings from our study, it seems effective to have a pre-transplantation appointment with HSCT patients talking about the importance of being physically active. Liang et al. concluded, in a meta-analysis, that the optimal timing of PA for HSCT patients is pre-transplantation [32]. Previous studies have concluded that supervised exercise prior to HSCT is safe and feasible [37] and that patients in partly self-administered pre-transplantation PE programmes can become stronger and achieve better physical condition compared with a control group [38].
Except for research done to explore sleeping patterns among allogeneic HSCT patients, there is, to our knowledge, no study reporting the effects of time in bed or time spent sitting. The patients in our study estimated their efforts using Borg’s RPE scale and a few found even sitting very exhausting during the isolation period. Therefore, we wanted to include sitting in PA, as a positive activity compared with bed rest. This is supported by Morishita et al., who described it as a sedentary intensity PA [35].
In the present study, we also wanted to see if PA might affect HRQoL and found that patients in the PASG experienced improved clinically important HRQoL regarding FACT-G, TOI-An and TOI-F after 6 months, as compared with patients in the SCG, although no statistical significance could be established, possibly due to the small sample size. Jarden et al. [13] found that fatigue was the most prevalent symptom for patients undergoing HSCT. The patients in the PASG maintained their fatigue levels from baseline at discharge, while levels worsened for those in the SCG, which is an interesting result considering the HSCT treatment in between. Using the FACT-An questionnaire to evaluate HRQoL in HSCT patients is not standard procedure, but the questions are relevant, and treatment-related fatigue is a major problem in this patient group. Furthermore, we did not want to use cancer-specific questionnaires, as patients with MS were included in the study.
The main outcome in most studies of PA is fatigue, cardiovascular/strength capacity, or HRQoL, but there are previous studies reporting an impact of increased physical activity on reducing the time of thrombocytopaenia and neutropaenia, as well as shortening the hospital stay in patients undergoing autologous HSCT [11], although later studies have failed to repeat these results [12]. We did not find any differences regarding medical outcomes or the need for isolation and hospital care in the present study.
Limitations and strengths
The small sample and the uneven distribution of patients undergoing allogeneic and autologous HSCT in the two study groups limit the internal validity of the study and the possibility to draw firm conclusions regarding the effects of PA support. An RCT would probably have resulted in more equal groups, but would on the other hand imply a considerable risk for diffusion of the PA support to the SCG, as the study was conducted in routine care. The small sample size also hampered the possibilities to study impact on medical outcomes, as patients undergoing HSCT are heterogeneous regarding diagnoses, treatments, and comorbidities. Future studies evaluating implementation of PA support in routine care should include larger samples of patients and apply strategies to ensure more equal comparison groups. This could be done by adapting the inclusion in the intervention group to the distribution of diagnoses in the earlier included standard care group. Another limitation was that the baseline assessment was conducted after the pre-transplantation consultation, which made it impossible to determine if the noted difference regarding the 6MWT before transplantation was due to the pre-transplantation consultation or other important differences between the groups. Thus, a more precise design should have been applied. The main strength of the present study was that it was conducted in routine haematological care and that the PA support was possible to implement without large additional costs, which are usually required in clinical trials.
Clinical implications
There is a clinically important message to haematological departments when it comes to HSCT patients: that consultations using an MI approach regarding PA, pre-transplantation, on admission, before a patient leaves the ward, and 14 days after hospital discharge, can be integrated in clinical care routines. This seems to be an effective, cheap and easy way to implement PA for HSCT patients.
Conclusions
It is possible to increase the amount of PA in patients undergoing HSCT treatment by implementing structured PA support, starting before admission and continuing throughout the hospital stay. Increased PA may improve HRQoL in a clinically significant way. However, larger studies with a more rigorous design are needed to confirm the positive effects of PA support and to evaluate the effects on medical outcomes and the need for hospital care.