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REBOUND “Trained to live again”: The practice of great Olympic coaches improves and enhances the quality of life of cancer patients in remission after hematopoietic stem cell allogeneic transplantation

Hematopoietic stem cell transplantation (HSCT) has established that patients with acute leukemia may be cured, leading to substantial hope [1,2,3]. However, this therapy is associated with important complications: rejection, graft versus host disease (GVHD), and infections are life-threatening situations and can require multiple hospital readmissions. Disease relapse represents a major challenge. Despite all these drawbacks, more and more patients become long-term survivors without disease, but this deeply wished cure, surprisingly and at least in the initial period, does not always represent the expected heaven. This is highly related to the above-mentioned complications that, when not lethal, may have a significant impact on quality of life.

Moreover, the quality of everyday life can be highly impacted with strained conditions. This situation has its share of unfulfilled needs and new, existential anxieties: the fear of relapse rendering the future uncertain, concerns about managing health needs with less medical support and guidance, often experienced as the disappearance of a “safety net” [4]. In addition, survivors need to incorporate this cancer experience into their life story and the image they convey to others. For example, allowing oneself to talk about cancer in a professional or personal context is not always an obvious issue. The sequelae caused by medical treatments may also cause some patients to feel unfit to carry out the roles (family or professional) they had previously occupied, even though their entourage may regard them as “cured” and thus able to carry them out. Controversially, some patients must reassert themselves against overprotective relatives as a result of the shared impact of disease. Unsurprisingly, patients may develop anxiety and depressive disorders, which are prevalent in allografted patients during this recovery phase [5,6,7]. These disorders, while not necessarily pathological [8], may cause a long-term deterioration in the psychological well-being as well as the quality of life of survivors. They may also be responsible for slowing down the resilience process necessary to ensure optimal global recovery [9,10,11]. The scientific literature mentions a link between the existence of depressive symptoms and decreased survival in patients with HSCT, showing that negative emotions have a broader impact than just quality of life, which may not allow them to live life to the fullest [3, 12]. As a matter of fact, remission period is not always totally received as the good news it should be as it may take a long time, sometimes years, to adapt to life after cancer [13]. Thus, what strategy could one devise, against this backdrop, to help survivors gain autonomy, self-confidence, and reassure them of their ability to cope and enable them to forge their own goals? In other words, how to help them to shift from a surviving to an alive status?

Looking beyond the therapeutic and clinical issues post-cancer occupies a considerable place in public health policies that encompass for assessing patient needs and advocating for better access to supportive care [8, 14]. In this perspective, we elaborate an innovative way of approaching the issue of psychosocial recovery for cancer patients in remission. This idea compares two worlds that may seem to have little or no reason to interact: high-level sport and HSCT. Indeed, the overwhelming challenge faced by many disease-free patients long after transplant is a lack of energy that is necessary for daily life filled with personal, social, and professional obligations. This lack of energy arises from their physical exhaustion but also from an inability to find not only meaning in life but also personal desires and projects in line with life goals. It is therefore a question of re-thinking an incentive to live by intrinsic motives such as pleasure and well-being, that translate into freely chosen objectives rather than by a trouble to overcome. These considerations are reminiscent of what elite athletes may face when they carry out their performance plan at all costs, in a results-driven context, ending more often in failure rather than success. Indeed, in the collective mind, what is most striking about an athlete is the strength of their determination despite the setbacks and failures inherent in the pursuit of excellence. “Falling and getting back up again” is a founding maxim of the sports myth. However, it is well understood that this drive to succeed is not accomplished alone but rather accompanied and encouraged by a coach, who plays a central role or rekindling the efforts of his or her athlete even beyond his or her perceived limits and limiting beliefs. Moreover, the existence and effectiveness of the coach–athlete relationship are well documented in sport psychology [15] and are known to be a determining factor in high-level performance. The coach guides and helps the athlete to define his or her goals, turning them into true aspirations, triggering a strategy to achieve them, and working to ensure that motivation and hope remain intact throughout the process. By creating the conditions for self-reliance, skill, and involvement, the coach works with the athlete to build sporting success and self-fulfillment in a complementary and cohesive relationship. The dyad is, here, experienced as a true helping relationship. As a result, through the lens of elite sport, we seek to question the transferability of a certain number of concepts and tools to the support system for patients with or in remission from cancer. While the pursuit of well-being is understood as central to the athlete’s performance, it can also be found in the psychological and social recovery of cancer patients in remission. Thus, we designed an exploratory experiment that aims to allow patients in remission to benefit from relational intervention strategies recognized in high-performance sport in order to improve their return to social life. A small cohort of voluntary patients (n = 8) in remission were offered regular “Rebound from Cancer” follow-up sessions with an expert specialized in coaching high-performance Olympic athletes and head coaches of French Olympic teams. These one-to-one coaching sessions took place outside the hospital setting and were attended once every 3 weeks, until participants perceived recovery (three sessions on average).

At the end of the program, we conducted semi-directive one-to-one “exit” interviews, which were audio recorded, followed by a verbatim transcription. Participants were asked three main questions (Are you satisfied with this coaching program? What did you get out of the coach’s sports expertise? Have there been and what personal changes have you initiated as a result of these sessions?).

Concerning the general evaluation of the contributions of the coaching sessions, our sample shows unanimous satisfaction with the design. Consequently, they formulated the wish to “see the sessions open to as many people as possible”. Participants also expressed gratitude and a strong feeling of consideration for, on the one hand, having been offered participation in the coaching protocol and, on the other hand, having been the subject of individualized attention and listening. They also pointed out that even if their relationship with the health care staff was highly satisfactory during their treatments, it remains, at the transition period to remission, a “need to be helped, supported and listened to by people other than caregivers (…) because we are no longer talking about an illness but about the future and hope”.

Moreover, it seems that having a strong expertise in high performance management gives the coach a certain form of effective singularity. If this makes him legitimate in the eyes of some “because he knows what it means to surpass oneself”, for others it allows them to build a place where they can speak freely and where a relationship of trust is possible from the outset as “in a sport changing room”. Finally, as sport is also identified with health and well-being, it is seen as a springboard to a new life without illness.

They, also, report that coaching has made it possible to “make sense”, to “move from the need to survive to the desire to live independently and consciously” and to project oneself enthusiastically into the future “without feeling guilty for having survived”.

For some, these interactions were an opportunity to define the outlines of a new professional project or new conditions of activity, and for another, they marked the beginning of another life with the desire to not “do as before the disease”. One of them even speaks of wanting to build up, from now on, an “identity” other than “a person who has had cancer”.

On the behavioral level, all of them state that the interviews have given them renewed confidence in themselves, in their capacity to undertake and/or to regain control of their actions and, more generally, of their lives. They express this feeling at the professional level, where they are concerned with what they feel they are made for, or at a more personal level where “time for oneself” is now seen as a non-negotiable fact.

Giving a positive orientation to the disease appears to be one of the major effects of the coaching sessions. Indeed, what ex-patients describe or express during these end-of-support interviews is not without recalling conception of “recovery from the disease” [16]. Regaining a form of self-acceptance by adopting positive attitudes towards oneself, recognizing and believing in one’s own potential and having a project to develop it, feeling open to new experiences or opportunities, manifesting the intention to organize one’s environment at one’s convenience and, above all, autonomously, feeling the need to share and transmit their experiences of ex-patients accompanied in recovery are strong markers of a return to positive psychological and social functioning [16].

It is clear that the biased selection of patients and the low number of returns limits the scope of the analysis, but these constitute a first indication of the contribution of the support system in which they participated. All of these preliminary findings seem to indicate that, for these participants, the impact of the accompaniment was to catalyze recovery, in the sense that it made tangible the possibility of a new life scenario which started with a reconsideration of one’s relationship to oneself and one’s environment.

From these encouraging initial results, we are presently running a clinical research trial on a larger number of allografted patients that will aim to more systematically characterize the impact of a sport-inspired coaching relationship on the distress, quality of life and well-being variables of cancer patients in remission.

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Acknowledgements

Authors thank CD Buckner, MD and L Nakatsu, RPH, Seattle, USA for their critical review of the manuscript. This program was partially supported by fundings from “Conseil département des Bouches du Rhone “ and “ Fondation du Crédit Agricole Alpes-Provence”.

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Correspondence to Sarah Calvin.

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Blaise, D., Calvin, S., Cuvelier, S. et al. REBOUND “Trained to live again”: The practice of great Olympic coaches improves and enhances the quality of life of cancer patients in remission after hematopoietic stem cell allogeneic transplantation. Bone Marrow Transplant 55, 997–999 (2020). https://doi.org/10.1038/s41409-020-0845-1

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