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Support Care Cancer
Support Care Cancer
Supportive Care in Cancer
0941-4355
1433-7339
Springer Berlin Heidelberg Berlin/Heidelberg

39150486
8799
10.1007/s00520-024-08799-3
Review
Promoting patient-centered care in CAR-T therapy for hematologic malignancy: a qualitative meta-synthesis
Xie Caiqin 2523077@zju.edu.cn

1
Duan Haoran 1
Liu Hui 2
Wang Yunhua 1
Sun Zhuanyi 1
Lan Meijuan 1
1 https://ror.org/059cjpv64 grid.412465.0 Nursing Department, The Second Affiliated Hospital of Zhejiang University School of Medicine, No. 88 Jiefang Road, Shangcheng District, Hangzhou, 310009 China
2 https://ror.org/059cjpv64 grid.412465.0 Department of Hematology, The Second Affiliated Hospital of Zhejiang University School of Medicine, Hangzhou, 310009 China
16 8 2024
16 8 2024
2024
32 9 59119 2 2024
8 8 2024
© The Author(s) 2024
2024
https://creativecommons.org/licenses/by-nc-nd/4.0/ Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.
Background

CAR-T therapy has emerged as a potentially effective treatment for individuals diagnosed with hematologic malignancies. Understanding patients’ unique experiences with this therapeutic approach is essential. This knowledge will enable the development of tailored nursing interventions that align with the increasing importance of patient-centered care.

Objective

To examine and synthesize qualitative data on patients and their family caregivers’ experiences during the treatment journey.

Design

We conducted a systematic review and qualitative meta-synthesis. Eligible studies contained adult patient or family caregiver quotes about experiences of CAR-T therapy, published in English or Chinese in a peer-reviewed journal since 2015. Data sources included MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, Scopus, Cochrane Library, CNKI, and WanFang.

Methods

Systematic search yielded 6373 identified articles. Of these, 12 reports were included in the analysis, which covered 11 separate studies. Two reviewers independently extracted data into NVIVO 12.0. Qualitative meta-synthesis was performed through line-by-line coding of full text, organization of codes into descriptive themes, and development themes.

Results

The qualitative meta-synthesis yielded eight primary themes. Noteworthy revelations from patients and their family caregivers regarding the CAR-T therapy journey encompassed various aspects. Prior to CAR-T therapy, patients experienced a lack of actual choice, struggled with expectations for treatment outcomes, and encountered intricate emotional experiences. During or immediately after CAR-T therapy, patients reported both comfortable and uncomfortable experiences. Additionally, patients emphasized that concerns regarding treatment efficacy and adverse reactions intensified treatment-related distress. After CAR-T therapy, significant changes were observed, and the burden of home-based rehabilitation. Additionally, we found factors contributed to the high CAR-T therapy cost.

Conclusions

To ensure the safety and sustainability of CAR-T therapy, it is crucial to address the physical and psychological aspects of the patient's experience. Effective communication and comprehensive management are highly valued by patients and their caregivers. Further research should investigate ways to reduce burdens and develop self-management education programs for patients and their families.

Supplementary Information

The online version contains supplementary material available at 10.1007/s00520-024-08799-3.

Keywords

Nursing
Stress
Patient-centered care
Chimeric antigen receptor (CAR) T cell therapy
Psychological
Qualitative studies
Systematic review
Meta-synthesis
issue-copyright-statement© Springer-Verlag GmbH Germany, part of Springer Nature 2024
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pmcIntroduction

Hematologic malignancies are dangerous myeloid and lymphatic tumors caused by disruption of normal hematopoietic function that are essential contributors to the global cancer burden [1–3]. Common types of hematologic malignancies include leukemia, Hodgkin lymphoma, non-Hodgkin lymphoma, and multiple myeloma [4]. Chimeric antigen receptor (CAR) T therapy, a breakthrough immunotherapy authorized by the Food and Drug Administration (FDA), has great potential as a treatment for hematologic malignancies including relapsed or refractory multiple myeloma, large B cell lymphoma, refractory or second and subsequent relapses of B cell precursor acute lymphoblastic leukemia, relapsed or refractory follicular lymphomas. It offers promising durable response rates and has been shown to improve patient survival [5–8]. As of April 15, 2022, the global immuno-oncology pipeline includes 2,756 actively developed cell therapies. CAR-T cell therapies dominate this category with 1,432 therapies, marking a 24% increase from the previous year, nearly 857 CAR-T cell therapies are in clinical trials, a 22% increase from last year [9]. Despite the growing understanding of their mechanism of action, infusion process, and therapeutic efficacy, CAR-T therapy present complex challenges. These include symptom management, rehabilitation, and psychological issues [10]. Furthermore, the costs of these treatments and the uncertainty of their clinical applications are rapidly changing the care landscape for patients with hematologic malignant neoplasms [11]. Hence, providing patient-centered care is crucial to ensure they can access demanded healthcare services and improve the quality of care [12–14].

However, patients receiving CAR-T therapy experience distinct challenges and encounters in contrast to conventional radiation and chemotherapy treatments [15]. These include the complexity of the treatment process, specific adverse effects such as cytokine release syndrome (CRS) and immune effector cell-associated neurotoxicity syndrome (ICANS) [16], and the emotional impact of undergoing a potentially life-saving but uncertain therapy [10]. Therefore, the CAR-T therapy process and related adverse effects on the physical and psychological well-being of patients are of utmost importance. Although previous research has primarily assessed treatment efficacy and adverse effects through patient self-reporting [17, 18], it has not thoroughly investigated the specific experiences of CAR-T therapy to identify critical care concerns [19]. This has led to a limited understanding of patients’ self-reported experiences before, during, and after treatment, thereby impeding the implementation of personalized care [20, 21]. Therefore, the study aims to review and synthesize existing relevant studies to reveal new insights and explore the comprehensive experiences of individuals with hematological malignancies undergoing CAR-T therapy, including patients’ and family caregivers’ perspectives regarding the treatment procedure, adverse effects, and the emotional and psychological aspects of their journey.

These findings will enhance healthcare practitioners' comprehension of the effects of CAR-T therapy on patients and offer more targeted recommendations for clinical practice. Furthermore, the results of this study will offer valuable direction for developing clinical care programs benefiting patients and their families. Ultimately, we hope this study will improve CAR-T therapy outcomes and enhance patients' overall well-being.

Methods

Study design

We performed a comprehensive analysis and qualitative meta-synthesis (PROSPERO CRD42024497174), adhering to the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) declaration [22]. We chose this study methodology because of its ability to synthesize data from multiple qualitative studies conducted in different contexts, helping us generate new theoretical or conceptual models and provide evidence for developing, implementing, and evaluating health interventions [22]. This study utilized the JBI methodology (PICOT framework) to guide the literature search and selection process [23].

Search strategy

A university librarian, a qualitative research specialist, and our research team developed predetermined search terms for a study on CAR-T therapy from the perspectives of adult patients and family caregivers. To identify search terms related to the type of study, we refer to the definition of qualitative research: those using methodologies such as contentment analysis, focus group, grounded theory, hermeneutics, phenomenology, iterative process, narrative or thematic analysis, and/or primarily analyzing textual to development concepts which help us to understand the meanings, experiences, and views of all the participants [24, 25]. We searched the following electronic databases for eligible studies: MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, Scopus, Cochrane Library, CNKI, and WanFang using Boolean logic, adapted to syntax and subject headings of each database. In addition to the electronic searches, we searched reference lists of included studies. The search was limited to articles published in English and Chinese from January 2015 (The starting point of the time window was selected considering that the first CAR-T therapy was only approved by the US FDA in 2017) to October 2023, updated to include articles up to January 18, 2024. This decision was made to avoid the significant time and financial resources required to translate qualitative works into English for inclusion in this synthesis. Taking the Medline and CINAHL databases as an example, the comprehensive search strategy for the database may be found in the Supplementary File Appendix A.

Eligible studies are those published in peer-reviewed journals that feature qualitative research, mixed-methods research, or qualitative components of observational or interventional studies. These studies should involve adult patients diagnosed with hematologic malignancies who have undergone CAR-T therapy, or their family caregivers. However, we included a comprehensive list of hematologic diseases in Appendix A to provide context and support the focused analysis on hematologic malignancies, facilitating transparency and comprehensiveness to avoid any potential confusion about the scope of our data collection and analysis. Studies with multi-stakeholders were also included, but only findings perspectives for those patients and family members. Articles that merely reported clinicians’ thoughts and experiences with CAR-T therapy were excluded.

Study selection and data extraction

The search results were imported into EndnoteX9, then duplicates were removed. Two independent review authors assessed the titles and abstracts of the identified records to determine their eligibility. The full text of all potentially relevant papers was obtained, as identified by one or both review authors. These papers were then independently evaluated by the two review authors. Any disagreements between the authors were resolved through discussion or, if necessary, by seeking the opinion of a third review author. When needed, we reached out to the study authors for additional information. Eligible data was extracted into the software NVivo 12, which includes: i) general study and sample characteristics; ii) methods; iii) participants’ quotes; iv) themes and conclusion; v) discussion, vi) Infographics or logic models.

Appraisal of methodological quality

The Critical Appraisal Skills Programme (CASP) guided the evaluation of the quality of these included articles [26]. The CASP tool was selected due to its widespread usage as a quality evaluation tool in the integration of health-related qualitative evidence. It is endorsed by the Cochrane Qualitative and Implementation Methods Group. Two researchers independently evaluated each article. Disagreements were also resolved by discussion and additional evaluation. It has been shown that studies of lower quality have a lesser contribution to the synthesis [27]. Consequently, the synthesis is biased toward the results of the higher-quality investigations. Studies in which the first three items were judged to be "NO" were excluded.

Data synthesis

For meta-synthesis, qualitative findings from each study were also extracted, and the correctness of extracted data was reviewed by other authors. We analyzed and synthesized qualitative evidence using Thomas and Hardens’ three-stage thematic synthesis approach: i) the coding of relevant text “line-by-line”; ii) the development of “descriptive themes”; and iii) the generation of “analytical themes” [28]. We chose this thematic integration method because it is the most accessible form of integration. It has a transparent methodology that allows for “thin” data to generate descriptive themes and “thick” data to be analyzed to develop from descriptive to more in-depth analytical themes. Coding was inductive, as was the development of descriptive and analytical themes. NVivo 12 was used to organize data during analysis.

In our analysis, we chose to categorize the treatment journey into different stages to tailor nursing care to the varying needs of patients at each stage. This approach enables nurses to provide more focused and effective patient-centered care. It aligns with studies showing that stage-specific care significantly enhances patient outcomes and satisfaction [29]. For data analysis, the three authors (DHR, XCQ, LH) read and reread the studies collected according to context and coded separately. The project leader (LMJ) merged the three authors’ sub-projects back into the main project and exported it to Microsoft Word, where data was accessible at any time, and opinions and comments could be freely exchanged among the three authors to increase communication and the reliability of inter-coders. We reported the proportion of words associated with each theme identified in NVivo 12 to provide a quantitative measure of the themes’ relative importance and prevalence within the data. This approach helps to illustrate the depth of the analysis and substantiate our thematic findings, making it easier to understand which aspects were most significant in the discussions or narratives analyzed.

Rigor, trustworthiness, and reflexivity

We prioritized the analysis of participant quotations to thoroughly examine the viewpoints and experiences of patients and family caregivers rather than the author’s themes or interpretations. The multidisciplinary team comprised academic nurses, research assistants, and a physician, who have specialized knowledge in research, critical care, palliative care, and hematologic malignancy. The academic nurses and research assistants were all trained in qualitative methods and conducted study selection (DHR, WYH, SZY), extraction (DHR, XCQ), appraisal (DHR, LH, XCQ), and synthesis (DHR, XCQ, LMJ). After the study selection, team members communicated regularly face-to-face in the demonstration room to perform the meta-synthesis and interpret the findings. A physician provided us with training and guidance on expertise related to CAR-T therapy and was involved in interpreting the findings. When necessary, disagreements were resolved through discussion, and assessment by a third review.

Results

Description of studies

Our systematic search of the published qualitative literature yielded 6373 identified articles, of which 12 articles reported 11 studies were included, Shah et al. studied the patient experiences of relapsed and refractory multiple myeloma (RRMM) patients participating in the KarMMa trial during treatment and 2 years after the end of treatment, respectively [19, 30] (Fig. 1; Supplementary File, Appendix C). The studies (2015–2024) were conducted in Europe (n = 3) [19, 30, 31], North America (n = 8) [12, 13, 21, 29, 32–35], and Asia (n = 1) [15]. Various qualitative analysis methods were used, most commonly thematic analysis (n = 4) and content analysis (n = 6). In terms of qualitative methodology, the most common approach was generic qualitative research (n = 8), which did not clearly adhere to any specific traditional qualitative design. The quality assessment revealed that most studies met the Critical Appraisal Skills Programme guidance (Supplementary File, Appendix B). One study used a theoretical framework [31]. Disease types include refractory or relapsed multiple myeloma (n = 4), B cell lymphoma (n = 4), and all types of hematological malignancies (n = 4). There were 244 participants (224 patients, 20 family caregivers). When reported, most patients were male (57%). The average age of the patient was 58.8 years.Fig. 1 The PRISMA flow diagram [36] of initial searches and inclusion (2015–January 2024)

Qualitative meta-synthesis

The process of data extraction resulted in the identification of 288 quotes provided by patients and their families, which were utilized for the qualitative meta-synthesis. Upon initial categorization, it was observed that the majority of the data about patients’ treatment journeys were specific to different stages, thus highlighting the necessity to conduct separate analyses for each treatment stage. Meta-synthesis ultimately results in eight major themes. Themes with many exemplary quotations are presented below and in supplementary material (Fig. 2; Supplementary File, Appendix D).

The nature of the CAR-T therapy experience (175/238, 74%)

Fig. 2 Themes and subthemes of treatment experienced by patients with Hematologic malignancies during CAR-T therapy journey

Before CAR-T therapy

Theme 1: Patients lacked a sense of actual choice (15/238,6%)

The CAR-T therapy is commonly contemplated as a recourse when alternative therapies prove ineffective or unsuitable, and it is perceived by patients and their family caregivers as an unavoidable option for receiving life-saving measures. Consequently, decisions made in the context of a matter of life or death diminish the patient’s perception of having genuine agency. The potential risks associated with the therapy and even lower rates of success do not exert a substantial influence on the decision to pursue this treatment:I don’t think I had a choice really. . .it was that or you won’t be here much longer. [32] (Patient)

If she didn’t have it, she was going to die anyway so our view is even with the smallest percentage it was worth the risk to take. [32] (Caregiver)

Theme 2: Struggled with expectations for treatment outcomes (24/238,10%)

Patients undergoing CAR-T therapy have varying expectations and goals based on their circumstances, understanding of the treatment, and condition. Some patients hope for groundbreaking, effective, and life-saving results, aiming for complete remission and a cancer-free life:CAR-T was overwhelmingly discussed as a ‘cure’ with words such as revolutionary treatment’ and a way to be ‘cancer-free’ [34]. (Patient)

I’m looking forward to having a pause in treatment and some quality of life come back to me [13] (Patient)

Several patients hoped that cilta-cel would be a cure and would be the last treatment they would undergo [29] (Patient)

Patients and caregivers said that the illness and ongoing care had disrupted their lives, aspirations, social roles, and relationships, leaving them with a diminished sense of control. They called this state a “bubble” representing life's vulnerability, which they attributed to failed treatments and their understanding of cancer as “relentless” and treatment as “cyclical.” This patient group views CAR-T therapy as just another treatment option, aiming for only a small increase in survival. They consider the possibility of treatment not working and plan for alternative treatments if needed:If it comes back in four/five years’ time there will be another trial, then I’ll take that trial, get back in remission for two years, but it’s a vicious circle. But I do believe that once you’ve got cancer, you’ll never get rid of it, it will always come back in your lifetime and bite you in the backside [32] (Patient)

It’s a bit of a bubble isn’t it when you have a chronic illness, and it’s a revolving circle of going from one treatment to the next and [she] is in that bubble and I feel like I’m – I’m not on the outside – but you know, you feel sometimes out of control [32] (caregiver)

Patients desire doctors to provide statistical data such as remission and survival rates, along with treatment side effects. This information helps patients and their families establish realistic treatment goals and prevent the emotional strain caused by unrealistic expectations:Expectations of treatment toxicity were focussed on neurotoxicity and intensive care admission [32] (Patient)

When [the doctor] gave me the figure of 35-40% that made me think, well we have to be realistic here, because otherwise I’m feeling more for my carer at least now [she] is in a mindset that it could go wrong [13] (Patient)

Theme 3: Intricate emotional experiences (37/238, 16%)

Theme 3 believed that patients’ emotions were more complex before treatment compared to during and after treatment. This intricate emotional condition arises from the CAR-T therapy and the present symptoms experience. Patients reported struggling with their emotional well-being before CAR-T therapy.

Patients described anticipating treatment outcomes as making them “excited,” “anxious,” and “nervous” about their upcoming CAR-T therapy: excitement related to their hope for the effectiveness of CAR-T therapy, anxiousness and nervousness related to uncertainty about what might happen, which includes “potential need for another treatment after treatment failure,” “uncertainty of the long-term effects,” “uncertainty of any treatment response,” “uncertainty of the duration of treatment response,” “unknown future side effects”:I don’t know what’s going to happen, so… there’s a lot of anxiety. So, I would say the anxiety is the biggest problem. [29] (Patient)

1 was concerned about possible strong side effects after treatment. [29] (Patient)

I need to know more about CAR T-cell therapy, such as the response rate of CAR T-cell therapy, whether there is a possibility of relapse after treatment, any serious adverse effects, and other more effective treatments. The more I know, the more I feel at ease. [15] (Patient)

Patients also described a lack of understanding and loneliness.They’re not going to understand. I mean, they can sympathize, but they can’t empathize with what I am going through. [29] (Patient)

There were others obviously world-wide, but I was the only in the UK. So, I felt a bit lonely, being the only one… [31] (Patient)

[I felt] fear and isolated because I didn’t know anyone else who was going through it. [21] (Patient)

In addition to emotional stress related to CAR-T therapy, patients may also encounter irritation, despair, disillusionment, and solitude due to cancer and reduced family or social capabilities:Well, I haven’t gone on vacation, and my mom likes to travel, and my friends like to travel, and I do as well. It’s very disappointing… And I’m all sad because I feel like I can’t go, especially on a cruise because I can’t catch like a virus, you know? [29] (Patient)It’s easy to make you irritable, or depressed when you have to deal with the pain every day. [29] (Patient)

During or immediately after CAR-T therapy

Theme 1: Patients expressed both comfortable and uncomfortable experiences. (40/238, 17%)

A few patients reported the infusion as an “anticlimax” or a “nonevent”. The procedure was easy to undergo and caused them to feel comfortable:It’s a lot easier and I feel better. And I would take this any day over, like getting the chemo and all that stuff. Yes. I would definitely do this again [29] (Patient)

Many patients praised the nurses' attentive care, thorough assessments, and compassionate interventions, which made them feel safe and well-cared for during their stay:They’re trained to recognize the issues that come out of CAR-T, and if they detect something, (a) they recognize it, and (b) they can handle it right away. [13] (Patient)

Topnotch. I have a really good care team…, monitoring me, checking up on me,’’ and ‘‘When I was in the hospital, it was pretty much anything I needed. I mean, if you’re hungry, thirsty, hot, cold—whatever you need, they take care of it. [13] (Patient)

Frequent medical and nursing procedures, the emergence of symptoms associated with therapy that impact the patient's level of comfort, as one patient described, “follow-up monitoring was a ‘nuisance’, the 24-h urine collection was a ‘minor annoyance’, and that she had significant anxiety about her most recent bone marrow biopsy.” Significantly, patients expressed experiencing worse sleep quality, intense sensations of constraint, and strong dislike:I got real tired of staying in the hospital for 10 days, especially after my fever broke…. when I was running the fever… I guess I was happy to be there, but after the fever broke…I had nothing to do, and I wasn’t really happy about being there for 10 days. [29] (Patient)

The prolonged hospital admission and intensive monitoring were associated with a feeling of confinement…I felt like a caged animal. [13] (Patient)

their most consistent complaint related to sleep, as frequent monitoring interrupted their rest. [32] (Patient)

Patients interviewed felt lonely because they were away from their families.…. feeling isolated or confined and being away from family [19] (Patient)

Not being present with loved ones (especially children or pets) [13] (Patient)

Theme 2 Patients emphasized that concerns regarding treatment efficacy and adverse reactions intensified treatment-related distress. (20/238, 20%)

Patients experienced distress during or immediately after CAR-T therapy in all aspects of their being, encompassing cognitive, physical, and uncertainty. Patients felt frightened, angry, depressed, misunderstood, frustrated, and overwhelmed. As one sufferer recounted, “I wasn’t fearful that I couldn’t make it through it, but it’s more the unknown of some of these side effects seem pretty wicked”. In addition, patients are concerned that the exhaustion caused by treatment would hinder their ability to resume their daily activities:The changes mean a lot because living in pain and being tired, or just being careful, walking gingerly, that stuff was like a new normal and it bothered me because I know within myself I wasn’t like that. [29] (Patient)

It’s just the thought that if I get [into remission] will it be long lasting, will I have to go down another route and can I emotionally cope with that anymore? [32] (Patient)

The presence of cognitive impairment instills fear and may even induce feelings of depression in individuals.He kind of didn’t have any interest in interacting with anyone else. I think that he kind of got into a…I guess, depression. He was frustrated with himself all the time because he couldn’t remember anything. [33] (caregiver)

After CAR-T therapy

Theme 1: Meaningful changes (18/238, 8%)

Patients consider meaningful change as symptom improvement and return to normalcy. The evaluation of CAR-T therapy's efficacy varies among patients based on their understanding of the disease. Those in remission prioritize treatment side effects, recovery, and symptom improvement. They considered experiencing “fewer, manageable or no side effects,” “successful and easy or difficult recovery,” “no need for maintenance therapy,” “improvement in symptoms compared to pre-treatment,” “increased activities of daily living,” and “return to a normal life” as meaningful changes:…changes in symptoms and HRQoL that occurred after treatment as extremely meaningful. [13] (Patient)

I’ve been in remission for, what, a year and a half. Well I feel very lucky and fortunate. [30] (Patient)

feeling more optimistic about the future, and that they were able to make life plans and live life like a ‘normal’ person [29] (Patient)

Patients with no or slight treatment remission or relapse, which may be accompanied by worsened health and well-being and treatment-related severe side effects, “lifestyle changes due to immunodeficiency” express low treatment satisfaction and perceive the treatment as causing negative changes in themselves:Relationships and social functioning had less marked improvement [29] (Patient)

The only bad parts of it were the risk associated with the actual infusion, I think it’s called … Cytokine release syndrome. The risk of that [30] (Patient)

It would be very difficult to have to go through it again. [34] (Patient)

Theme 2: Burden of home-based rehabilitation (21/238, 9%)

During out-of-hospital rehabilitation, patients and families want to stay in touch with medical staff. Getting counseling from professionals helps reduce the psychological burden. Patients were unsure about the details and results of each follow-up appointment, and the frequent visits disrupted their daily routines, causing travel stress and psychological strain.….I had an hour and a half travelling time to get there, and then an hour and a half traveling time to get back, so that was a much more substantial time cost. [31] (Patient)

This led to me frustrated that I did not know precisely what the endpoint of the therapy might look like and as a result how long the follow-up might continue for. [35] (Patient)

This burden of travel is known to aggravate anxiety and depression… [12] (Patient)

The patient also worried about the carer’s inability to recognize and manage somatic symptoms promptly.Inability to access care immediately when needed (e.g., MRI, blood work) [13] (Patient)

Safety concerns if caregivers do not recognize side effects that need to be addressed. [13] (Patient)

Patients voiced apprehension regarding potential, unpredictable occurrences and the incapacity to resume their daily routines.felt anxious and stressed due to uncertainty surrounding treatment effectiveness and logistics [29] (Patient)

I feel that I am a burden to my family because of my illness. I used to take care of my parents, but now they have to take care of me. Moreover, I have no energy to take care of my children. [15] (Patient)

The family caregiver’s strain is compounded by onerous healthcare responsibilities and a lack of caregiving expertise.I was quite worried, being in the hotel with him, knowing things that could have happened. [32] (Patient)

Travel time to hospital and concern about delays in admission for care. [13] (Patient)

Factors contributing to the high CAR-T therapy cost (63/238 quotes, 26%)

Patients reported experiencing a treatment cost burden before, during, and after treatment in all aspects of their being, encompassing the costs directly related to clinical care (e.g.,: costs of drugs for side effects, effect and duration of treatments, limited access to clinical trials/new therapies with multiple treatment lines), the indirect treatment costs (e.g.,: cost of time off/reduced productivity at work/changing careers, the cost of transport, accommodation, and food), the emotional toll of treatment (eg: psychological effects of uncertainty, emotional toll of running out of treatment options), the physical toll of treatment (e.g.,: Loss of physical ability). This topic provides insight into the factors leading to high costs from the patient’s perspective and helps patients and caregivers understand the value of health outcomes [35].The cost of CAR T-cell therapy is too high for the average family to afford. Because I am sick and can't go to work, my quality of life has declined significantly. I hope the government can give me some subsidies or cover part of the cost of CAR T-cell therapy as medical insurance [15] (Patient)

I have been ill for more than two years. I have spent much money, and I do not know how much money I will spend in the future. I have added much financial burden to my family [15] (Patient)

you need to have somewhere to stay. I had to continue to pay for car insurance, pay for my vehicle, pay for activities that my child has. So, it was very difficult [33] (Patient)

Discussion

This study analyzed 12 qualitative studies to examine the experiences and nursing concerns of patients with hematological malignancies undergoing CAR-T therapy at different stages. Key patient- and family-centered insights include: Distinct emotions and treatment expectations experienced prior to treatment; different comfort experiences and fewer medical explanations during or immediately after treatment; patients and families value out-of-hospital rehabilitation, communication, and connectedness with healthcare experts after treatment.

After analyzing the treatment expectations and experiences of individuals, we found a strong connection between them. If there is a mismatch between expectations and experiences, it can affect patients’ satisfaction with therapy, which is consistent with recent research [37, 38]. In the context of CAR-T therapy, factors such as patient experience, understanding of the disease, attitude towards treatment, and current situation influence treatment expectations. Meaningful changes for patients include clinical efficacy, physical symptoms, and returning to normal life. However, we did not find a direct correlation between treatment expectations and these changes. Cockle et al. believed that patients’ treatment expectations will change according to the treatment process and results [37]. Therefore, this correlation is complex and requires more in-depth original research.

Before receiving CAR-T therapy, patients experienced a range of emotions and distress, including excitement, nervousness, anxiety, and emotional, physical, relational, and spiritual distress. This strong emotional reaction is often due to the perception of CAR-T therapy as a final option for patients hoping for a cure or remission. While high-dose chemotherapy and radiotherapy also present considerable emotional and physical challenges, CAR-T therapy is associated with its unique complications, such as cytokine release syndrome. This condition can be quite severe and demands rigorous management. Additionally, the newness and uncertain results of CAR-T therapy can further heighten anxiety among patients. As a result, pre-treatment patients lack support from peers, feel uncertain about treatment, and have concerns about the treatment selection process that their family and healthcare team may not understand. These factors, along with physical pain and a desire for normalcy, make it difficult for pre-treatment patients to maintain a stable emotional state when faced with complex emotional situations. Our research aligns with previous studies on this matter [31]. Patients’ experiences in treatment programs are complex as they have multiple roles and obligations [39, 40]. It is crucial to address their maladaptive emotions and psychological barriers before treatment and provide peer support.

This study shows that patients in hospital rehabilitation need comfort care and clear explanations of side effects. Palliative care may be necessary for patients with ineffective treatment. Patients will receive intensive care from post-infusion of the CAR-T cell. However, frequent ward rounds, medical procedures (e.g., blood draws), and adverse reactions (e.g., fever, cognitive problems, and pain) significantly affect the quality of patients’ sleep and cause fear, anxiety, and other negative feelings, resulting in physical and mental discomfort. Patients recognize that physical and mental well-being are closely connected in therapeutic settings [41], and receiving palliative care, promoting comfort is an essential part of nursing intervention [42], Therefore, we propose the need for the application of Kolcaba’s comfort theory at this stage of the process [43]. Subjective toxicity refers to the individual’s own experience of subjective adverse reactions or side effects while receiving medication treatment, particularly for cancer [44], subjective toxicity in the context of CAR-T therapy includes, but is not limited to, nausea, loss of appetite, and headaches. Unlike traditional cancer therapies, the subjective toxicities reported by patients undergoing CAR-T therapy can be linked to severe side effects such as cytokine release syndrome (CRS) and neurotoxicity. These symptoms may be experienced concurrently and synergistically, significantly increasing the overall impact on the patient’s symptom burden, quality of life, and psychological stress [45, 46]. In the future, we will thoroughly study the advantages of a patient education program for those with hematological malignancies receiving CAR-T therapy. This program aims to improve their ability to independently handle subjective toxicity symptoms.

Patients and caregivers recovering at home prioritize feeling safe. They express concerns about their lack of experience in rehabilitation and care, uncertainty about potential risks, confusion about follow-up appointments, worries about accidents during transportation, and a desire for effective communication with healthcare professionals. Caregivers of patients play a critical role during treatment, often experiencing psychological stress and misinterpretation of symptoms [47]. However, there is limited research on rehabilitation for patients receiving CAR-T therapy. Extensive research, including numerous systematic reviews and meta-analyses, has consistently demonstrated that physical activity significantly alleviates fatigue across various patient populations [48–50]. These studies highlight the efficacy of exercise interventions in not only reducing fatigue but also enhancing psychological well-being and quality of life. A recent study also suggests that rehabilitation practices can be inferred from the limited functional information available on patients who completed treatment [51]. Our suggestion is to use the Chronic Disease Self-Management Model [52] to develop targeted interventions and establish effective communication channels to guide patients and carers in learning and applying self-management skills to reduce anxiety.

The perception of CAR-T therapy as a last-resort treatment significantly influences patient and family decision-making. Often considered only after exhausting conventional options, CAR-T therapy is not only a potentially life-saving intervention but also an inevitable choice, limiting patients' sense of autonomy. This sentiment aligns with studies on decision-making in severe chronic illnesses, where urgency can overshadow the patient’s desire for control [53]. Faced with life-threatening conditions, patients may prioritize immediate survival over potential risk. This complex dynamic underscores the necessity for robust patient support and counseling to help navigate these tough decisions. Enhancing communication between healthcare providers and patients, discussing realistic outcomes, and clarifying available choices can mitigate feelings of coercion and support a more informed decision-making process.

Implications for nursing practice

Our findings emphasize the need for a comfortable environment, procedures, and communication as the primary means to give patients targeted nursing at different stages. Nurses need to be aware of the patient’s specific care needs throughout treatment to create a personalized care plan that prioritizes safety, effectiveness, and patient comfort. We propose a sequential care approach: Before treatment, communicate positively with the patient, identify their negative emotions, assess treatment expectations, address unrealistic expectations, and establish a positive mindset for treatment. During or after treatment, provide comfort care and share medical knowledge to enhance the patient’s ability to manage subjective toxicity and improve their overall well-being. For some patients for whom treatment is unsuccessful, palliative care may be considered during this period. To improve patients’ quality of life after leaving the hospital, we will create a program and communication system for their rehabilitation.

Strengths and limitations

Strengths of this study include: the systematic approach to study retrieval and data synthesis; international representation of included studies; the acquisition, inclusion, and analysis of the full range of content obtained in the original studies; and the prioritization of patients and families’ voices, including understanding the patient’s experience from quotes from family members. Limitations include that the included studies were conducted mainly in developed countries because CAR-T therapy is less available in developing countries due to medical conditions. This limitation may have led to cultural bias. However, this bias has been mitigated by the cultural and disciplinary diversity of the research teams.

Conclusion

This study discovered that patients face similar physical, psychological, and social challenges during CAR-T treatment. However, these challenges are unique due to the complex nature of the treatment and its stronger side effects. Researchers have not yet focused on the factors that help patients and their families cope with these challenges, which will be explored in future studies. Promoting the safety and sustainability of CAR-T therapy requires prioritizing teaching programs that help patients enhance their self-management skills. These references will serve as valuable resources for guiding patients during their treatment.

Supplementary Information

Below is the link to the electronic supplementary material.Supplementary file1 (DOCX 53 KB)

Acknowledgements

The authors would like to thank Professor Ying from the School of Nursing, Zhejiang University, for her suggestions and revisions.

Author contribution

XCQ and DHR wrote the main manuscript text. The academic nurses and research assistants conducted study selection (DHR, WYH, SZY), extraction (DHR, XCQ), appraisal (DHR, HL, XCQ), and synthesis (DHR, XCQ, LMJ). All authors reviewed the manuscript.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval

This is a meta-synthesis of qualitative literature. The Research Ethics Committee of The Second Affiliated Hospital of Zhejiang University School of Medicine has confirmed that no ethical approval and ethics accordance is required.

Consent to participate

Not applicable.

Competing interests

The authors declare no competing interests.

Contribution of the paper

What is already known about the topic?

Chimeric antigen receptor (CAR) T therapy is a novel approach that has the potential to improve the clinical outcomes of many patients with hematological malignancies.

Nurses play an important role throughout the CAR-T therapy procedure. Nurses’ professional competence and comprehensive care are critical to the effectiveness of CAR-T therapy, patient safety, and out-of-hospital rehabilitation.

Due to limited knowledge about patients' care needs at different treatment stages, dedicated palliative and supportive care services may not be taken into account.

What this paper adds?

Discussing potential factors contributing to the high cost of CAR-T therapy with patients and their families before treatment can help them make decisions and reduce extra expenses during the treatment journey.

Effective communication is vital throughout CAR-T therapy, including understanding patients' expectations, educating them about symptoms, defining treatment value, and addressing psychological needs.

We suggest prioritizing patient comfort during CAR-T therapy hospitalization and implementing an off-site rehabilitation coaching program to enhance physical recovery and ensure patient safety.

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Caiqin Xie and Haoran Duan are considered joint first authors of this paper.
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