Navigating What Is Not Known—Patients’ Experience of the Life Threat Connected to Allogeneic Stem Cell Transplantation
Abstract
Background: Allogeneic stem cell transplantation (allo-SCT) represents a firmly established therapeutic option for patients facing (non-)malignant haematological diseases. Despite its curative potential, however, this treatment is associated with substantial morbidity and mortality rates as well as a decreased quality of life. Given this context, a scientific void needs to be addressed: How do patients deal with the existential situation of being exposed to a life threat despite the curative potential of their treatment? This study aims to explore the patients’ experiences considering their life threat in the context of the allo-SCT.
Methods: Qualitative semistructured, in-depth interviews were conducted with patients treated by allo-SCT over the course of transplantation (before, during or after hospitalization). Interview data were interpreted using category-based qualitative content analysis.
Results: Seventeen interviews were conducted. Results revealed a strong focus on hope and avoidance of dealing with the life threat. At the same time, challenges due to the lack of alternative treatments and the uncertain course were highlighted. The data revealed that patients wished to receive support by healthcare professionals, their carers and their social environment in general. Beyond that, patients desired to obtain honest information within an open discussion about a realistic prognosis and risk of treatment and course of disease.
Conclusion: The findings emphasize an interplay between hope, avoidance and psychological distress in the face of the patients’ life threat. To assist allo-SCT recipients in navigating their life threat during treatment, it is desirable to establish avenues that provide adequate support.
Trial Registration: German Registry of Clinical Trials: DRKS00027290
1. Introduction
Allogeneic stem cell transplantation (allo-SCT) provides a firmly established treatment for high-risk or treatment-refractory (non-)malignant haematological disorders, including leukaemias and lymphomas. In this procedure, stem cells are obtained from a suitable donor and transferred to the recipient patient to supplement or replace their bone marrow and immune system.
The transplantation often serves as a final curative treatment option for patients who have not responded to other therapies or who have exhausted other treatment options. Despite its curative potential for a large proportion of patients, however, the procedure is associated with a high risk of complications and mortality [1–5]. The likelihood of allo-SCT being successful varies depending on the underlying disease, as evidenced by previous studies outlining a 5-year survival rate of approximately 50% [1]. This risk is largely increased by graft-versus-host disease (GvHD) [2, 6]. Other physical symptoms may include fatigue and sleep disruptions, gastrointestinal disturbances, nausea or sexual dysfunction [7–9]. In addition, many patients suffer from psychological distress [8, 10–12]. For example, a high prevalence of anxiety and depression [13] and high rates of posttraumatic stress disorder are described within patients [14].
Hence, patients who receive an allo-SCT have the prospect of being cured, albeit at the cost of a substantially high risk of developing severe or fatal complications. How these patients navigate the simultaneous presence of hope and the dread of their life threat is still largely unexplored [14]. In their respective studies, Gemmell et al. [15] and Barata et al. [16] emphasize the pivotal role of palliative care in alleviating distressing symptoms in patients, optimizing their quality of life and providing comprehensive treatment and support to them and their families. Most importantly, both studies also indicate potential palliative care needs that may often be unmet.
Therefore, this study’s objective is to explore and describe patients’ experience and views considering the life threat that accompanies allo-SCT and how they deal with it to optimize the care and support of patients during allo-SCT.
2. Methods
2.1. Study Design
This study is part of the AlloPaS project [17], the overarching goal of which is to design a palliative–supportive intervention for patients with allo-SCT in order to enhance their coping abilities and reduce their burden. A major part of the study covers patients’ perspectives on the life threat associated with the allo-SCT. For this present study, qualitative data have been collected using narrative interviews. This approach aligns with the objectives of qualitative research, which is mainly to provide a detailed and broad understanding of individual experiences and views given their specific contexts rather than to be statistically powerful and to be able to generalize findings. This research adheres to the ‘Consolidated criteria for reporting qualitative research (COREQ)’ [18]. The Ethical Review Committee of the Medical Faculty of the University of Cologne has approved this part of the study as well as the study protocol (number: 20-1370_2).
In line with the WHO definition, palliative care in this study is understood as the relief of suffering and improvement of quality of life for patients and families facing life-threatening illnesses, regardless of the treatment phase. In this context, ‘supportive’ is specifically used to describe palliative care measures that address particular patient needs.
2.2. Participant Selection and Data Collection
From February 2022 to July 2022, we undertook semistructured interviews with patients who (A) were about to undergo allo-SCT, (B) were inpatients due to allo-SCT or (C) were in outpatient care for a maximum of 100 days following transplantation. This up to 100-day post-transplant time period was deemed relevant for capturing patients’ peritransplant experiences in this pilot while minimizing potential recall bias.
Interviewing patients at these three distinct time points—before, during or after allo-SCT—allows, although not performed in a sequence per patient, to identify potential stage-specific challenges and an understanding of their evolving needs and experiences throughout the transplantation process. Two of the authors, A.R. (Health Services Researcher, M.Sc., female) and C.S. (Psychologist, M.Sc., female), who are both experienced in the qualitative paradigm, conducted the interviews.
An interview guide was developed by the interdisciplinary research team. The following themes were covered in the interview guide: (1) experience with haematological disease, (2) (potential) experience with life threat, (3) (potential) changes in goal of care and (4) (potential) last phase of life.
Patient recruitment was continued until achieving data saturation, which refers to a state in data collection when further interview data do not provide any new information on the content.
Patients who met the following criteria were included in this analysis: (a) indication for an allo-SCT for reasons of high-risk (SCT as consolidation) or treatment-refractory (SCT as salvage) malignant haematologic diseases, (b) age over 18 years, (c) a basic command of the German language and (d) to be able to consent. Patients were engaged in person by medical and nursing staff in outpatient and inpatient settings at the University Hospital of Cologne, Germany. In parallel, flyers were distributed, and inpatient visits were conducted by the study team to reach potential interview partners. Interested individuals received study information, a consent form, and a questionnaire about their sociodemographic data before their interview appointment.
Prior to the interview, interviewers obtained written informed consent by post or in person. In addition, the study team outlined the study objectives and content again verbally with participants before they provided written informed consent. In this process, a pseudonymized evaluation of the data was guaranteed, as was a rigid, protection-compliant handling of patient data.
Interviews were conducted either on the ward, virtually via video conferencing, or by phone. Due to the SARS-CoV-2 pandemic, as well as the sensitivity of the topic, we allowed patients to choose which form of interview they felt most comfortable with. Moreover, before the start of the interviews, we tried to create a trusting atmosphere so that participants would feel as comfortable as possible talking about a potentially stressful issue. Also, we provided knowledge about our background and the goals of the interview study.
Only the interviewer and the patient were present during interviews, which took place with a minimum of interruptions, e.g., due to necessary clinical procedures.
Patients were asked to respond freely to interview questions. Interviews were audio-recorded, transcribed verbatim and pseudonymized by a research assistant (M.L.) as well as a professional transcription office. Thereafter, audio recordings were randomly compared with transcriptions to guarantee their accuracy. Comprehensive field notes were taken following the interviews. Transcripts were not returned to participants.
2.3. Data Analysis
In order to analyse the interviews, the category-based content analysis suggested by Kuckartz [19] was used in a deductive-inductive manner. This approach was utilized to code clearly and systematically, allowing for a structured analysis.
Three independent coders (A.R., C.S. and M.L.) were responsible for this analysis. Codes were developed in an iterative process over several rounds until consensus was reached. After all coders had become familiar with the material, a code structure was developed deductively using the interview guide. In an inductive process, content from the text was then added to this structure and grouped to form categories.
For the analysis, the most current version of the qualitative analysis software MAXQDA 2022 Plus [20] was used.
3. Results
In total, 17 of the 26 eligible patients contacted were interviewed. The remaining nine patients dropped out for the following reasons: subsequent death (n = 1), nonparticipation due to the stressful subject matter (n = 2), general loss of interest in participation (n = 4) or study requirements no longer met (n = 2).
Interview length spanned from 21 to 63 min.
The detailed sociodemographic data of the participants and medical data at the time of interview conduct can be found in Table 1.
| Gender (male/female/diverse) | |
| Male | 15 |
| Female | 2 |
| Age | |
| Median (range) | 62 (24–75) |
| Religiosity | |
| Religious | 9 |
| Nonreligious | 6 |
| No answer | 2 |
| Mother tongue | |
| German | 16 |
| Spanish | 1 |
| Family status | |
| Single | 3 |
| Widowed | 1 |
| Married/in a steady relationship | 11 |
| Divorced/separated | 2 |
| Living situation | |
| Alone | 4 |
| With (spouse) partner | 11 |
| With children | 5 |
| With friends | 1 |
| With parents | 1 |
| Educational qualification | |
| No vocational qualification/not in vocational training | 2 |
| In vocational training | 1 |
| Vocational training completed | 4 |
| Completion of professional/master craftsman/academic training | 10 |
| Time of treatment | |
| (A) Were about to undergo allo-SCT | 4 |
| (B) Were currently inpatient because of allo-SCT | 7 |
| (C) Were in outpatient care for a maximum of 100 days after allo-SCT | 6 |
| Underlying haematological disease | |
| Acute myeloid leukaemia (AML) | 10 |
| Myelodysplastic syndrome (MS) | 3 |
| Acute lymphatic leukaemia (ALL) | 1 |
| Myeloproliferative neoplasm (MPN) | 1 |
| Lymphoma | 3 |
| Multiple myeloma | 1 |
| Haematopoietic cell transplantation comorbidity index (HCT-CI) | |
| Median (range) | 2, 5 (1–6) |
| Number of allo-SCTs (planned) | |
| First | 15 |
| Second | 2 |
| GvHD | |
| Yes | 14 |
| No | 2 |
| No answer | 1 |
- Note: The tally of responses can exceed the number of participants due to multiple selections.
4. Challenging Factors Related to Life Threat
4.1. Facing the Existential Realities Posed by Diagnosis
“You have cancer now […] I don’t know what I imagined before, but I think it was just different […] As a person affected, you are first of all very intensively occupied with this condition: ‘You have cancer, and it is life-threatening.’ And then it rattles around up there. And then sometimes there are reactions that you simply can’t foresee.” (Patient no. 14)
4.2. Transplant as the Sole Chance for Survival
“What is so extreme and what is also difficult for me is this lack of alternatives. […] And this lack of alternatives is something that sometimes gets to me to a greater or lesser extent. And I can’t do anything myself; I can only wait.” (Patient no. 13)
4.3. Uncertainty Causing Anxiety and Fears
“What is more present, what comes with the treatment, is the immune deficiency. […] It’s always buzzing around in your head that, you know, a fungal infection in the lungs, or something similar, could mean the end. So, it wouldn’t look so good in any case, would it? It accompanies you and also strongly influences your everyday life.” (Patient no. 7)
“I don’t really give a shit about [my life changes], it’s more about the people around me. For them, it’s more difficult than for me.” (Patient no. 11)
5. Patients’ Coping
5.1. Risk Awareness
“I can assess risks, and I can perhaps deal with probabilities. So, I would rather do something like that than play the lottery, because I know the probabilities.” (Patient no. 14)
5.2. Focus on Hope
“And if it has gone relatively well so far, there is hope that it can also possibly lead to a cure. […] I need optimism to go into a last chance with high risks. I must be positive.” (Patient no. 1)
5.3. Avoidance
“I don’t worry about that at all. Because if you fixate on the side effects, then you wait for them to come. Then you pay much more attention to it, and then you notice much more.” (Patient no. 11)
“And I think, so some psychologists in the seventies were saying you shouldn’t repress. But I think that′s nonsense. I just repress it. We all have to die sometime. And I’m in such good hands here, and I feel the same way, that I don’t even allow that thought.” (Patient no. 17)
6. Supportive Factors Concerning Life Threats
6.1. Preserving Inner Balance
“Yes, my greatest source of strength is first of all my own […] inner peace somehow.” (Patient no. 4)
6.2. Former Experience of Crisis
“I have already survived a stroke. I have already survived paralysis of the hands and legs. So I was already in acute danger of death in both cases. So I thought: So, you’ll survive that here, too.” (Patient no. 2)
6.3. Faith (Religion/Spirituality)
“As I said, I am Christian, and I know that a lot of people from my church have prayed for me. That has also given me great strength.” (Patient no. 2)
“Faith helps me in life now. But if you are extremely religious, death is something else, because it is the transition, so to speak, into a next life.” (Patient no. 7)
6.4. Carers and Social Environment
“Yes, my wife strengthens me; that’s no question. And she also takes care of me in a way that I didn’t expect otherwise. But that’s good, of course. And of course, the circle of friends is there too. […] all this gives you a bit of peace, a bit of strength, and perhaps also a bit of serenity.” (Patient no. 1)
6.5. HCPs
HCPs were frequently mentioned as a source of strength. Nursing staff and medical staff were particularly highlighted as being close to patients because they worked with them. However, patients also emphasised the relevance of other professional groups, such as those specialised in psychotherapy, palliative care, pastoral care, or sound therapy (e.g. singing bowls), who were described as having a calming effect.
“I have never experienced such a relaxed atmosphere as here. So, I knew of many competent people who are medically absolutely top-class here. This has been totally confirmed by the behaviour of medical as well as nursing staff. And that gives so much strength that you don’t get all these other, I say, destructive thoughts at all.” (Patient no. 17)
6.6. Information and Knowledge
Patients indicated a clear need to understand their disease and its potential course including the life threat. They reported that this knowledge provided them with a sense of control, while open discussion of treatment risks reduced their brooding about existential concerns. This knowledge also prevented patients from reading anything into unclear communication or dubious sources on the internet when searching for information about their disease and life threat.
“When I specifically asked [my doctor] about it, he of course knew exactly how high the mortality rate is (…) Yes, and to inform me about it without me specifically asking about it would have been good. That would have taken away a lot of my fears. And if the university hospital cannot provide films or something similar, then at least link to other universities or other hospitals. So that is very important, this social media today, because the patients also inform themselves there.” (Patient no. 7)
“And I don’t know if that’s favourable when you have one patient and you overwhelm him with the full truth. Well, that can be too much for them (…) I think it is probably important during the medical information talk that you first find out what kind of person this is. Does he want to hear the truth? Or does he not care?” (Patient no. 14)
7. Discussion
This is the first study to explore the experiences and views of patients with allo-SCT regarding the life threat due to the underlying disease and the allo-SCT itself. It reveals that patients employ avoidance when confronted with their life threat, while emphasizing their focus on hope. Prominent challenges faced included the unpredictability of the disease’s course as well as the lack of alternative treatments. HCPs, the patients’ carers and the social environment have been shown to pose a crucial supportive role. A desire for honest communication and comprehensive information considering prognosis and potential treatment options was underscored.
Firstly, it is worth highlighting that, independent of individual patient needs, initial structures such as psycho-oncological support, pastoral care and palliative care on a consultation basis as well as through regular interdisciplinary meetings are already in place to address the potential life-threat in patients.
The prominent role of hope for patients is to be emphasized. It encouraged patients in their decision to undergo allo-SCT and provided them with a source of strength. Also, it is crucial in caring for these patients to support and strengthen hope by many ways and by all professionals including psycho-oncology and palliative care specialists. A positive attitude regarding the allo-SCT and hope to get cured help the patient (and carer) for a better outcome and to cope with the life threat and uncertainty. Prior studies found that positive emotional experiences and constructs, such as hope, relate to health-promoting behaviours in patients with haematopoietic stem-cell transplantation [21, 22].
A similar phenomenon has been observed by Sachs et al. [23], who show that terminally ill patients use hope to actively act against their life threat. Falling into hopelessness, by contrast, threatens their ability to cope with their disease. Despite their fundamental difference in prognosis compared to this patient group, allo-SCT recipients can exhibit a similar response when confronted with an existential threat: an inherent ability to maintain hope and resilience. This focus on hope may carry a protective function and result in physical and psychological benefits [24–26].
Chen, Kuo and Tang [27] note that advanced and terminally ill cancer patients often do not maintain an accurate prognostic understanding. At first glance, the burden of diagnosis may contradict the patients’ narrative of hope, for which Vehling et al. [28] provide a possible explanation: patients’ concerns and attitudes alternate between a sense of loss and a general commitment to life. These fluctuations vary widely among patients.
As allo-SCT is often considered the last chance for a cure, patients perceived a burden due to the lack of alternatives. At the same time, the treatment was intertwined with feelings of uncertainty, owing to the treatment’s uncertain outcome, the likelihood of a palliative course and a fear of disease recurrence, as underlined in previous studies [29, 30]. Also, uncertainty was identified to be a significant predictive factor for symptoms associated with posttraumatic stress in patients undergoing allo-SCT [29]. Dunn, Arber and Gallagher [31] reinforce these findings, noting that allo-SCT recipients, despite the curative intent of their treatment, face existential crises that can contribute to considerable life disruptions, both psychosocially and physically.
Further, patients expressed a need for information regarding their potential life threat and a realistic prognosis. This might encompass comprehensive information about a potential palliative course, which could in turn support patients when faced with a potential end of life. In accordance with the patients’ focus on hope, it is imperative to note that their will to survive and their commitment to candid communication regarding the life threat are not inherently contradictory. Therefore, HCPs must bolster the patients’ hope while maintaining honest communication without ignoring the real prognosis. Affirming this, our results also underscore the importance Gemmell et al. [15] ascribe to the role of HCPs, who can provide essential information to patients about their treatment options. They indicate that the involvement of early palliative care can satisfy previously unmet needs, such as symptom control, emotional support and assistance with decision-making processes. Relatedly, Barata et al. [16] note that patients with a better understanding of palliative care tend to have more positive attitudes toward this type of care. In light of our study’s findings, however, this aspect should be approached with caution, as some patients expressed concerns about (potential) harm related to facing the risk of dying at an inopportune time (i.e., around the allo-SCT itself). Nevertheless, education should be easily available to those who request it, as prognostic understanding was deemed ‘extremely’ or ‘very’ important by 88.9% of patients, according to El-Jawahri et al. [32].
8. Strengths and Limitations
We recruited significantly more men than women for this study, limiting deeper insight into the experiences of women and other genders. Our analysis also focuses solely on patients with a potential for cure. Moreover, despite our best efforts, we were not able to recruit patients after changes in goals of care by limiting life-sustaining therapies and near the end of life, restricting our understanding of their views.
Likewise, it would be a matter of interest to learn whether patients’ perspectives on their situation change over the course of treatment, which could not be determined in a single interview by a patient.
Despite these caveats, it should be emphasised that this study provides a wide range of insights due to its sample size. The inclusion of patients at different time points along the transplant trajectory should also be highlighted. This allows for a multifocal view of patients at various stages of treatment. Notably, the fact that interviews were collected from both outpatients and inpatients provides a comprehensive understanding of their experiences.
9. Conclusion
Patients see allo-SCT as their last chance for a cure. They tend to be reluctant to confront the life threat, even when they have hope and seem to be dealing with the issue. HCPs have a crucial role in addressing and supporting these emotions. At the same time, maintaining comprehensive and honest communication and educating patients about various treatment options are paramount—best at the time of diagnosis or indication of allo-SCT. Therefore, using accessible and low-barrier approaches (e.g., brochures, videos and conversation opportunities) might increase the patients’ well-being during the treatment course.
To examine individuals’ perceptions of their life threat further, it would be valuable to conduct a study of patients’ understanding, especially of those potentially facing a palliative course, focussing on their cognitive processing and its impact on their decision-making. This could deepen our understanding of patients’ individual needs and perspectives, helping to further improve communication and care practices.
Ethics Statement
The Ethical Review Committee of the Medical Faculty of the University of Cologne has confirmed that no ethical approval is required (number: 20-1370_2). Research was carried out in accordance with the relevant guidelines and regulations of this ethical review committee and the Declaration of Helsinki.
Consent
The authors have nothing to report.
Conflicts of Interest
The authors declare no conflicts of interest.
Author Contributions
S.T.S., U.H. and M.H. designed the study and coordinated the research project. A.R. and C.S. conducted all interviews with patients. A.R., C.S. and M.L. were involved in the data analysis. A.R. wrote the first draft of this article. B.S., A.P. and R.V. contributed to the interpretation of the analysis results. They contributed by providing key feedback and revising this manuscript’s draft. All authors read and revised the manuscript. All authors approved the final manuscript version and agreed with its submission.
Funding
This work was funded by the Deutsche José Carreras Leukämie Stiftung (DJCLS) (DJCLS 21R/2021).
Acknowledgements
We extend our sincere gratitude to all patients volunteering to share their experience with our research team during a vulnerable phase of their lives. Special thanks also go to the team of the Bone Marrow Transplantation Unit and Outpatient Clinic at the University Hospital of Cologne, Germany, for their commitment to our study and accrual of participants. Furthermore, we would like to express our appreciation to Deutsche José Carreras Leukämie Stiftung (DJCLS) for supporting the AlloPaS study. Given the absence of native English speakers within our study team, both AI and a professional language service were utilized to enhance the linguistic quality of this manuscript.
Open Research
Data Availability Statement
The data that support the findings of this study are available on reasonable request from the corresponding author. The data are not publicly available due to privacy and ethical restrictions.
