Using journey mapping to understand the experience and need for patients with chimeric antigen receptor T-cell therapy.

Introduction

Chimeric antigen receptor T-cell (CAR-T) therapy, which combines antigen recognition and T-cell signalling domains to express receptors that target antigens found on the surface of cancer cells, has been a major innovative breakthrough treatment method for hematological malignancies such as acute lymphoblastic leukemia, lymphoma and multiple myeloma. 1 , 2 Currently, 7 CAR-T cell therapy products, Axicabtagene ciloleucel (Yescarta®, Kite Pharma EU), also known as Yescarta, Tisagenlecleucel (Kymriah®, Novartis), brexucabtagene autoleucel (Tecartus®), lisocabtagene maraleucel (Breyanzi®), idecabtagene vicleucel (Abecma®), obecabtagene autoleucel (Aucatzyl®) and ciltacabtagene autoleucel (Carvykti®) are granted the U.S. Food and Drug Administration (FDA) approval for the treatment of patients with different lymphoma indications whose disease has failed multiple lines of therapy. 3 , 4 Newer CAR-T cell products for other hematologic ontological diseases are being developed. 5

The unique operational processes of a CAR-T cell therapy program in clinical practice range from a few weeks to a few months. Despite its potential, however, due to the high initial cost, complexity of the treatment process, uncertain therapeutic effects and potential complications, life-threatening toxicities such as cytokine release syndrome (CRS), and immune effector cell-associated neurotoxicity syndrome (ICANS), 6 , 7 patients receiving CAR-T cell therapy often have complex care needs. 8 In addition, persistent emotional states, such as anxiety, depression, stress, and fear of recurrence, can significantly impact the physical and mental health status of patients. 9 It is particularly important to gain an understanding of the symptoms and emotional experiences of patients receiving CAR-T cell therapy, and to provide patient-centered care, in order to facilitate their physical and psychological recovery. 10 Despite the existence of numerous studies that have evaluated the self-reported outcomes of patients treated with CAR-T cell therapy, with the aim of understanding the current status of patients' quality of life, there is a notable absence of information pertaining to the priorities of care based on patients' experiences and needs. 11 , 12

Patient journey mapping is a tool designed to facilitate the visualization of patient experience and needs. 13 By integrating data regarding patient interactions with various elements of the health care system, as well as changes in patients' emotions, behaviors and needs throughout the process, it provides comprehensive insights into the touch-points, pain points and satisfaction points of each stage and link. Based on these insights, recommendations for patient-centred improvements are then proposed. 14 Patient journey mappings have been employed in the context of chronic diseases that necessitate prolonged monitoring and management, including diabetes, cardiovascular diseases, and chronic respiratory diseases. They have been particularly instrumental in optimizing treatment pathways, enhancing patient experience, and fostering multidisciplinary collaboration. 15

Considering the distinctive benefits of patient journey mappings in comprehending patients' emotional experiences and necessities, this study used the qualitative research approach to construct CAR-T cell therapy patient journey map, meticulously examining the pivotal nodes in the patient's journey and the target points for intervention. This study aims to provide a reference for improving the comprehensive clinical management practice of patients receiving CAR-T cell therapy and enhancing patients' overall well-being.

Methods

Study design

A patient-oriented constructivist grounded theory approach was used in this qualitative study. 16 It highlights a researcher's reflexivity, acknowledging the researcher's role in conducting the research, as well as providing greater analytical power over the data. Patient journey mapping approaches provide useful guidance for the preparation and execution of research projects. Following the methodology of Bulto LN et al., 13 , 17 this the project followed the six main elements of 1) defining the problem, 2) consulting with key partners, 3) designing the research question, 4) selecting the appropriate type of mapping, 5) recruiting, collecting, and analysing data; 6) reporting findings, disseminating findings, and taking action or finding, engaging, planning, exploring, developing, deciding, and changing. This process was reported following the Consolidated Criteria for Reporting Qualitative Research (COREQ) checklist ( Supplementary Material 1 ). 18

Participants and setting

The hematology ward of a tertiary hospital in Wuhan was selected as a field site for participant observation of patients receiving CAR-T cell therapy for a period of six months, spanning from August 2024 to January 2025. Individuals were eligible if they met the following criteria: 1) underwent CAR-T cell therapy in the aforementioned hospital prior to the interview; 2) were over 14 years of age; and 3) were able to provide informed consent and communicate verbally, with no cognitive impairments. The exclusion criterion was: an end-of-life stage with a prognosis of less than four weeks. To obtain maximum sample variation, further interviews and observations were conducted by selecting patients with characteristics different in age, gender, primary disease diagnosis, and stage of CAR-T cell therapy from those who were initially interviewed or observed. The principle of saturation was used to derive the sample size, namely when no new themes or perspectives emerged during data collection. 19

Data collection tools

First, we identified participant observation questions: what are the practices for the comprehensive management process of clinical CAR-T cell therapy? What are the experiences and needs of patients throughout the CAR-T cell therapy process? How can the entire CAR-T cell therapy process be optimized from the patient perspective? Define the observation plan: develop an observation outline based on, “Prompt question to consider when reporting patient journey mapping research” ( Table 1 ). 20 Second, guided by the research question, we constructed the data collection tools: (1) a comprehensive CAR-T cell therapy comprehensive management form was developed based on the field study outline to collect basic patient information, stages of CAR-T cell therapy, duration of therapy, and stakeholders, and (2) an interview outline of the experiences and needs of patients receiving CAR-T cell therapy. A preliminary interview outline was developed based on the purpose of the study through a literature review and group discussion. A pilot interview was conducted with two CAR-T patients. To ensure that the follow patients could easily understand the questions, we adjusted the questions order. An additional question was added as the introductory statement. In addition, the following further clarifying questions were supplemented (“How did they help you?”). Ultimately, the study questions included the following: 1) Where did you obtain the information about CAR-T cell therapy? 2) Why did you choose CAR-T cell immunotherapy? 3) What experiences or events impressed you during your CAR-T cell therapy? 4) How was your overall emotional state/mood during your CAR-T cell treatment? 5) Who provided you with support and help during your CAR-T cell treatment? How did they help you? 6) What other support and help would you like to receive on CAR-T cell therapy? Table 1 Prompt question to consider when reporting patient journey mapping research. Table 1 Domain Prompt questions Who • Who is undertaking the research? • Who has been consulted or involved in designing the project? • Who are the target population? • Who are the participants? • Whose voice(s) will be privileged in the reporting of the project? • Who is involved in the analysis and interpretation of the results? • Who is funding the project? (if funders involved, influence and involvement to be acknowledged) Why • Why is patient journey mapping being undertaken? • Why is the selected population being targeted? What • What methods are being used to recruit participants? • What methods are being used to map patient journeys? • What timeframe is being captured? • What are the results of the project? • What inferences or conclusions can be drawn from these results? • What reporting guidelines will inform the reporting of the project? When • When is the patient journey being mapped? Where • Where is the patient journey mapping occurring? How • How have end-users and/or stakeholders been consulted in or engaged with the design, conduct and reporting of the project? • How does this mapping address the research question or clinical problem that has been identified? • How are results being interpreted? • How are results being confirmed with participants? • How do the results compare with other data relating to the targeted patient population? • How will the results of the project be translated into practice (if appropriate)?

Data collection methods

The research process was comprised of three stages: descriptive observation, focused observation, and selective observation. The initial phase was a descriptive observation conducted by the first author (a Chinese registered nurse with a master's degree who had systematically learned qualitative research) who entered the field site as a trainee. The researcher focused on observing the physical environment, patients' behavior and social interaction with stakeholders (including health care professionals, family members, agents and other patients), as well as the management processes related to CAR-T cell therapy in the department. Field-notes were written during the observations as the materials for drawing patient journey maps. Each observation lasted between 6 and 8 hours. The second stage was focused observation. Suitable interviewees were selected according to the inclusion and exclusion criteria. Once the interviewees signed the informed consent form, in depth, semi-structured interviews were conducted face-to-face by the third author, which allowed the author to obtain information regarding the patients' experiences with medical treatment and their needs during CAR-T cell therapy. The interviews ranged from 20 to 30 min. The interviewee's nonverbal information was carefully observed and recorded during the interviews. All of the questions were clarified and confirmed in good time, and the interviews ended if there was no new information. The recorded information was transcribed within 24 hours of the interview, proofread in conjunction with the interview notes and, where in doubt, verified with the interviewee immediately to ensure the accuracy of the transcribed information. The third stage was selective observation, during which problems and special phenomena identified in the focused observation were selected for further evidence and typical cases to evaluate the map together with stakeholders, such as doctors, collection nurses, retrieval nurses, patients, patient families, and third-party company personnel. The entire study period lasted 6 months.

Data analysis

A three-level coding procedure with constant comparisons was used to analyse the qualitative data. The open coding phase was conducted separately by two researchers who read the field notes repeatedly for coding. This coding process represented the original content of the field notes as much as possible, and a third researcher summarized the coding results of the same field notes. Axial coding phase: the free nodes of the open coding were aggregated and summarized by one researcher. Other researchers on the team subsequently proposed relative modifications to provide further elaboration on the corresponding major categories. Selective coding phase: the researchers used a narrative approach, utilizing the entire CAR-T therapy process and the core dimensions of the patient journey map as the narrative framework. They then integrated and condensed the relationships between the categories, forming a core category that encompassed all categories. Following this initial distillation, the original field notes and coding results were shared with the interviewers for review and returned to the key informants for verification, if necessary, with the aim of enhancing the credibility of the data.

Development of patient journey mapping: first, the framework of patient journey mapping was developed through a synthesis of literature retrieval and descriptive observational data. Second, patients’ experiences and needs identified by the interviewees were added to refine the details of the patient journey maps for CAR-T cell therapy. Finally, following an analysis of typical cases, the content of the maps was discussed and refined according to thematic information categories. The results of this analysis provide suggestions for innovation and improvement.

Quality control

All of the authors are registered nurses with multiple years of clinical experience in hematology care settings. To avoid affecting the ideas and thoughts of the patients, during the research period, none of the researchers were involved in the actual care of the patients. During the analysis, three researchers held meetings and reached a consensus regarding the differences and similarities between subcategories and categories. To enhance internal validity, all of the authors thoroughly examined the data and discussed and clarified the developed concepts and theory. Additionally, an external expert was consulted to ensure the confirmability of the results and minimize potential researcher bias, and the expert's opinions were consistent with those of the research team.

Results

Demographic characteristics

Twenty-six patients receiving CAR-T cell therapy were initially recruited for interviews, with 1 patient declining to participate due to recording factors. Two of the original participants were lost to follow-up. The interview was saturated with information by the 21st patient, and recruitment was terminated when no new themes emerged from the addition of two patients. In conclusion, the study included a total of 21 patients, as detailed in Table 2 , and 19 interviewees were interviewed once. Patient number 12 and patient number 16, as typical cases, were interviewed two times to ensure the complete collection of information. For an overview of the characteristics of the participants, see Table 2 . Table 2 Characteristics of the participants ( N ​= ​21). Table 2 No. Sex Age (years) Education background Diagnosis Payment methods Main carer Time after CAR-T therapy (days) 1 Male 16 Primary school Acute lymphoblastic leukemia Partial reimbursement by medical insurance (60%) Mother Day 1 2 Female 32 Middle school Acute lymphoblastic leukemia Partial reimbursement by medical insurance (90%) Husband Day 12 3 Female 19 Junior college Diffuse large B-cell lymphoma Partial reimbursement by medical insurance (50%) Mother Day 27 4 Male 29 Junior college Acute lymphoblastic leukemia Others Mother Day 36 5 Male 44 Junior college Diffuse large B-cell lymphoma Others Wife Day 12 6 Male 41 Junior college Acute lymphoblastic leukemia Partial reimbursement by medical insurance (60%) Father Day 4 7 Male 20 Junior college Acute lymphoblastic leukemia Partial reimbursement by medical insurance (40%) Parents Day 247 8 Male 27 Junior college Systemic lupus erythematosus Others Mother Day 4 9 Female 22 Junior college Acute lymphoblastic leukemia Partial reimbursement by medical insurance (50%) Mother Day 28 10 Male 23 High school or secondary school Acute lymphoblastic leukemia Partial reimbursement by medical insurance (26%) Mother, girlfriend Day 59 11 Male 51 Junior college Multiple myeloma Fully self-funded Son Day 6 12 Female 40 Junior college Acute lymphoblastic leukemia Partial reimbursement by medical insurance (50%) Mother Day 2 13 Male 49 High school or secondary school Diffuse large B-cell lymphoma Partial reimbursement by medical insurance (50%) Sister, wife Day 351 14 Male 33 High school or secondary school Chronic lymphoblastic leukemia Partial reimbursement by medical insurance (45%) Mother Day 74 15 Female 57 Junior college Acute lymphoblastic leukemia Partial reimbursement by medical insurance (50%) Husband, Son Day 96 16 Male 56 Junior college Diffuse large B-cell lymphoma Others Wife, sibling Day 21 17 Female 42 Middle school Systemic lupus erythematosus Others Husband Day 13 18 Female 32 Junior college Idiopathic thrombocytopenic purpura Partial reimbursement by medical insurance (50%) Mother Day 6 19 Female 61 High school or secondary school Multiple myeloma Partial reimbursement by medical insurance (50%) Husband Day 179 20 Female 69 Junior college Multiple myeloma Fully self-funded Caregiver Day 5 21 Male 53 Junior college Multiple myeloma Fully self-funded Wife Day 17 CAR-T, chimeric antigen receptor T-cell.

CAR-T cell therapy patient journey mapping

Our qualitative analysis led to a patient-oriented constructivist grounded theory exploring experiences and care needs in patients receiving CAR-T cell therapy. Three main categories, seven subcategories, and one core category were used to map the journey of patients receiving CAR-T cell therapy. The core category is curing the disease, and the main categories are complex physical journeys, individualized psychological journeys and multidimensional care needs. The horizontal axis (time axis) of the constructed patient journey map for CAR-T cell therapy included 4 phases: the subject screening and assessment period (including outpatient counselling, subject eligibility screening, waiting for hospitalization, and baseline assessment), the cell harvesting period, the infusion period (including the lymphodepletion preconditioning period, infusion period, and post-infusion observation period), and the recovery follow-up period (including early follow-up and long-term follow-up). The vertical axis (task axis) is based on the key elements of the patient journey map and the purpose of the study. It incorporates seven dimensions of CAR-T cell therapy: duration, patient physical journey, psychological journey, care needs, stakeholders, pain points, and suggestions for improvement. It also incorporates corresponding themes, as shown in Fig. 1 . Fig. 1 CAR-T cell therapy patient journey mapping. CAR-T, chimeric antigen receptor T-cell. Fig. 1

Theme 1: complex physical journeys characterized by the struggle against discomfort as a side effect of treatment

Patients receiving CAR-T cell therapy experience various types of physical discomfort related to disease and treatment-related symptoms. During the eligibility period, the patients’ physiological pain points were related to the primary disease. Patients experience reduced physical function, reduced self-care ability and pain caused by the primary disease, as well as fatigue and exhaustion due to frequent physical examinations. The cell harvesting process typically takes several hours, and patients may experience puncture site pain, discomfort caused by limited movement, numbness of the limb on the side where the tube is placed, and fatigue. The symptoms that manifested during the infusion period included loss of appetite, nausea and vomiting, mucositis, dry mouth, abdominal pain and diarrhoea caused by lymphodepletion preconditioning. The observation period after transfusion typically lasted for 14 days. All patients experienced different degrees of fever symptoms at various time points. Some patients experienced hair loss, pain, loss of appetite, dizziness, and cognitive changes in symptoms, and three patients experienced ICANS. During the follow-up period after infusion, some patients presented symptoms, including somatic pain, cognitive impairment, fever, fatigue, and pain in the hepatic region. There was no reaction on the first day of preconditioning. On the second day, I had a pretty strong reaction, and then on the third day, it was even more intense, I had a fever, I kept vomiting and didn’t feel like eating. (N8, D4) I was in good condition before the infusion, after that, I probably had slept for like ten days. My mind was a bit foggy and I kept forgetting things. (N3, D27) The main thing is the bone pain, which is unbearable. (N10, D59) The cell harvesting process takes about four to five hours, making it a bit uncomfortable. (N19, D179)

The unique physiological experiences and care needs of patients resulting from CAR-T cell therapy-related emergency medical events, such as CRS and ICANS, form a comprehensive care model, namely emergency response and continuous psychological support needs. This also emphasizes the key aspects of full-process management once again. My first experience of CAR-T cells transfusion started at 10 o’clock in the morning. Then, I started to run a high fever at 11; I felt like I was out of it. (N1, D1) I've got a splitting headache and I just couldn’t get to sleep. It was so bad that I even found myself mourning and shouting at night. I was in bed for about two weeks. I lost consciousness, but I wasn't in a coma. (N4, D36) At that time, when I experienced delirium, I felt like I was overwhelmed. (N13, D351) After the cells were transfused, I had a fever, trembling severely. Then I felt shortness of breath, unable to breathe, and almost went into shock. (N14, D74)

Theme 2: individualized psychological journeys created by the hope of a cure and anxiety over side effects

The psychological journey of patients varies individually and is closely related to their symptom responses. Support from health care professionals and family members can strengthen patients’ positive psychological state and improve their ability to self-care and cope with negative emotions. The desire to recapture life is the core motivation that drives patients to confront all of the challenges associated with CAR-T cell therapy.

CAR-T cell therapy leads to positive psychological experiences

Patients typically have good experiences, such as happiness, excitement, gratitude, trust, satisfaction, love, and being loved, due to the opportunity to receive CAR-T cell therapy. My mum was a huge help to me. She was looking after me and was always there for me, encouraging me from the time I got this disease to the first and second time receiving CAR-T cell therapy. (N1, D1) Once the infusion is over, I feel great. I'm ready to eat and drink whatever I want. I'm more relaxed than I was during chemotherapy. (N2, D2) When I first came across CAR-T cell therapy, I was really excited because it seemed like a more advanced treatment, especially when I found out about its healing effect. (N4, D36) I'm pleased to say that I've remained relaxed throughout the whole process. I have total faith in the hospital staff and in this technology. (N11, D6) I think it was mainly down to my father's care and my mum's diet. (N7, D247)

Over 50% of the patients enrolled in this study were individuals with refractory and/or relapsed hematological malignancies who elected to pursue CAR-T cell therapy following the failure of a range of alternative therapeutic modalities. After experiencing the physical discomfort and psychological distress, CAR-T cell therapy renewed the patients’ hope for life. Amid adversity, patients demonstrate strong psychological resilience and the potential for posttraumatic growth. If you have another transplant after your first relapse, the results might not be as good. My doctor suggested I try this new CAR-T therapy to find a solution. (N1, D1) I'm really hoping to get well soon and not have a relapse. (N3, D27) I'd like to thank my parents and my girlfriend for all their support during my CAR-T cell therapy. They've been there for me every step of the way, giving me a boost and helping out with the costs. I'll make sure I repay them in the future. (N10, D59) I hope everyone in the community will stay positive about blood-related illnesses, have faith in technology, have faith in the medical staff, and keep moving forward on this path to a wider and brighter future. (N11, D6)

Side effects induce negative psychological experiences

The patient's negative mindset is closely related to the effectiveness of CAR-T cell therapy, manifesting as: worry and fear about the uncertainty of whether they will have the opportunity for this therapy; emotional distress and anxiety caused by fluctuations in symptoms and indicators during the treatment process; panic and fear due to the uncertainty of treatment effectiveness; and feelings of inferiority, discrimination, social isolation, and guilt towards family members resulting from prolonged cancer treatment. The first CAR-T treatment didn't work, and I was really worried that the second one wouldn't either. I was feeling pretty down because I knew that this leukemia was affecting not just me, but my whole family. (N1, D1) The pretrial period was just as nerve-wracking as I'd expected. I was worried about making a mistake and just feeling generally uneasy. (N3, D27) After the cell harvesting, I went through a rough patch. Some of my indices were affected, and I was really uncomfortable. My confidence took a bit of a hit, too. It went from excitement at the beginning to maybe a little bit of worry and concern. (N4, D36) I'm hoping that our friends and relatives will be friendly towards us, not discriminatory. (N10, D59)

The uncertainty of the effectiveness of CAR-T cell therapy and its side effects results in significant psychological stress to patients. Sudden medical emergencies, such as CRS and ICANS, not only increase patients’ distrust of the effectiveness of treatment, but also affects their engagement in the treatment process. I had a high fever at 11:00 a.m. on the day of infusion. I was pretty panicked and scared, fear of failure after the cells are transfused into the body. (N1, D1) I was so worried about how CAR-T would affect me on the day of the treatment because I'd never had it before and didn't know what to expect. (N9, D28) After being discharged from the hospital, the side effects of the medication led to liver dysfunction. I have been experiencing some pain in my lower right abdomen. It must be because I have been taking medication for too long. I've been getting vaccinated for over a month now; I really can't take it anymore. (N15, D96)

Self-adjustment during CAR-T cell therapy

Throughout the course of treatment, providing medical guidance and timely treatment outcome feedback from medical members, attentive care and emotional support from family members, and religious beliefs can assist patients in managing anxiety and stress. After going through this, I was worried that I would get a fever, but when that didn't happen, the doctors and nurses were great at explaining what was going on and reassuring me that there were ways to cope with the situation. (N2, D12) The whole infusion process is a bit uncomfortable and irritating. But I have to think about it from the other side: people are uncomfortable, so it's likely that the CAR-T cells are playing a role in the effect. (N4, D36) I think that being a Christian helps me to keep a lid on my emotions. (N12, D2) I tend to think positively overall, and I'm working on overcoming my negative emotions. I'm trying to think in a more positive way. (N18, D6)

As patients adjust to their new lives following CAR-T cell therapy, they tend to re-evaluate their priorities and reprioritize their lives accordingly. Patients develop altruistic ideas and express a desire to disseminate their experiences with other patients, with the aim of providing assistance to others. When I came here, some patients from the local hospital asked me what treatment I was getting. I said I was receiving CAR-T cell therapy. And he wants to know the CAR-T policy here, and asked for my contact info. I wanted to write some CAR-T articles, news, and interviews, so that I could promote it more. (N9, D28) Right now, I'm basically resting a lot and working less. (N10, D59) I want to share my experience with people and hopefully encourage more patients. (N20, D5)

Theme 3: the unpredictable physiological challenges and emotional upheavals inherent to progressively build multidimensional care needs

The unique experiences associated with CAR-T cell therapy prompt multidimensional health care needs for patients, including guidance regarding health knowledge, participation in treatment decision-making, care of daily life, emotional support, and financial assistance. These needs are not only an essential component of the patient's adaptation to the treatment process, but also a critical factor in ensuring treatment efficacy and improving the patient's quality of life.

Health knowledge about CAR-T cell therapy

Patients' access to knowledge regarding CAR-T cell therapy is diverse. When faced with making treatment decisions, managing the disease, and coping with disease and treatment-related complications, health care professionals must provide sufficient health knowledge regarding treatment and rehabilitation. This support enables patients to make optimal medical decisions. I've seen the banner at the hospital entrance before and I've watched the professor's live broadcast of CAR-T. I usually check Tic-Tok and see that some people have used this CAR-T therapy or undergone this CAR-T treatment. (N2, D12) I was looking online for information about my condition when I came across this treatment. (N3, D27) The doctors were really helpful. They gave me lots of advice and helped me make a plan, including some CAR-T options. I then had a chat with my doctor and picked the option that suited me best. (N4, D36)

The patients' need for health knowledge reflects their uncertainty regarding treatment and their desire to engage in self-control of their disease. For novel therapies such as CAR-T cell therapy, patients can alleviate anxiety and improve treatment adherence through comprehensive informational support. Knowledge empowerment can serve as a crucial support pathway for emotional adjustment and physiological recovery, especially regarding treatment side effects and uncertainties I'd like to know exactly when the infused T-cells would increase or decrease after infusion, as well as how it affects the leukemia. (N1, D1) When I returned home from hospital, I'd like to speak to my doctor about what I need to follow up on, and then what are some of the methods that can be used in conjunction with CAR-T to improve the cure rate of the disease. (N2, D12) I'd like to know what the effect is after 14 days. Do all the CAR-T cells stay in my body afterwards? I'd like to get a better understanding of this. (N6, D4)

Social support needs come from stakeholders

Social support needs came from professionals, family, relatives, friends, coworkers, patients, and all aspects of society. The supporting content includes professional health care support from medical staff; convenient access to medical services; specialized follow-up care; financial support; daily life care; concern from family members; visits and encouragement from friends, coworkers and classmates; explanations and emotional support from other patients receiving CAR-T cell therapy; and financial assistance from national policies and social welfare organizations. I'm hoping that the reimbursement ratio for health insurance will be increased, and that there will be more support for people who have this disease. (N1, D1) My husband is my main carer. He's here with me every day. (N2, D12) I hope that as the country develops, there'll be some kind of health insurance support for commercialized CAR-T, because 1.2 million (commercialized CAR-T) is still a big amount for a family. (N9, D28) I'd like to thank our company for all their support during my treatment.” (N10, D59) My siblings, and cousins, they also care about me. (N12, D2)

In the process of CAR-T cell therapy, a patient's social support network not only provides emotional support but also helps the patient better adapt to the treatment process, enhancing their treatment adherence. This suggests that in the comprehensive management practice, integrating the roles of relevant stakeholders can provide more comprehensive and personalized support for patient, thereby improving patients' overall well-being. The doctors and nurses have been a great help to me during this confusing and low period. And also my family, they have been with me every step of the way. They have helped to lift my mood and deal with the difficulties in my life. (N4, D36) My mum is with me every day, and my parents have rented a house nearby so they can take care of me while I'm here. They cook for me and bring me food every day. (N9, D28) That patient let us know all his treatment process by sharing them in the group chat, and also, his efficacy . He also updated the later effects with us in the group. The treatment results are still quite good. (N18, D6)

Disease curing is the destination of the journey

Patients who have undergone CAR-T cell therapy frequently undergo a lengthy course of medical treatment and diagnoses, particularly those with hematological malignancies who are eager for a cure and to recapture life through this innovative treatment technology. Given that a second transplant might not lead to a cure after the first relapse, I'd like to explore this new CAR-T therapy to see if it can help. (N1, D1) At that time, chemotherapy was resistant and had no effect, and then there was no other way but to choose CAR-T as a treatment. (N14, D74) My ultimate goal is to be cured. (N16, D21) Every time a new treatment option came out, I tried it, it just didn't work very well. (N17, D13)

As a life-threatening therapeutic approach, recapturing life is the core motivation driving patients to persist in treatment and psychological adjustment. However, a gap between excessive treatment expectations and actual outcomes can easily lead to feelings of disappointment, increase fear of treatment, and negatively affect patients’ adherence to therapy. Thus, in turn, creates a negative feedback loop. I hope all SLE patients can recover. (N8, D4) I'd like to get off the medication and be cured sooner. (N17, D3) It's a new field, so there are some unknowns, but I still want to give it a try. (N18, D6) After the re-examination, is it possible that I don't need to take medication anymore. (N19, D179)

Discussion

In this study, we used grounded theory to map the journeys and needs of patients receiving CAR-T cell therapy. 21 The process of field research entails the collection of data within a defined context, accompanied by the documentation of field notes. These data are subsequently subjected to repeated analysis and comparison, resulting in the formulation of a core category, namely, curing the disease. The CAR-T cell therapy process is intricate, encompassing a multitude of medical stages, including subject eligibility screening, treatment protocol formulation, cell harvesting, transfusion, and follow-up. 22 The impact of treatment and complications on patients' physical, mental and social health can vary considerably. 6 Curing the disease is the central theme of the patient journey in CAR-T cell therapy. In the pursuit of disease cure, patients opt to accept the challenge of life-threatening complications, and their emotions oscillate between hope and disappointment. Supported by various forces, they achieve self-growth throughout the process. Each stage of the CAR-T cell therapy process is accompanied by unique challenges and pain points. Compared with similar studie 23 , 24 the creation of patient journey maps can assist medical staff in accurately identifying key stages of the treatment process and potential difficulties, allowing for more comprehensive and timely support. This encompasses timely communication, effective management of adverse effects, psychological counselling and personalized care, with the objective of assisting patients throughout the treatment process and of optimizing their experience and quality of life. As a tool for long-term care management, patient journey maps also provide valuable references for patients with cancer, individuals with chronic diseases, and postoperative patents.

The findings of this study highlight that health knowledge guidance and symptom management are key nodes in a patient's physical journey, whereas emergency responses to sudden medical events during treatment represent a challenge in comprehensive management. As a novel therapeutic approach, a comprehensive understanding of the treatment process, treatment outcomes, and potential side effects is fundamental for both patients and their families to actively cope with treatment. For patients receiving CAR-T cell therapy, dynamic and individualized health guidance throughout the treatment process helps patients adjust their expectations, enhance their coping abilities during treatment, and face potential discomfort with a more rational and positive attitude. The role of symptom management in the patient's physiological journey cannot be overlooked, especially in high-risk treatments, where the emergence of side effects may affect treatment adherence and quality of life. In this study, the patient journey map clearly illustrates the potential symptoms at each stage of CAR-T-cell therapy, which is consistent with the results presented in the literature review. 6 This tool allows health care professionals to inform patients in advance of possible discomfort, respond promptly, and manage symptoms to alleviate physiological distress. Considering that the ability to respond to sudden emergency medical events is a critical factor in ensuring the smooth progression of treatment, how to provide early warning and timely responses to enhance the safety of novel therapeutic techniques, remains a pressing issue in clinical practice.

This psychological journey indicates that novel therapeutic approaches have a bidirectional psychological effect. Patients with life-threatening diseases, such as cancer, organ transplants, and major surgeries, often experience significant physical suffering and psychological challenges. However, new treatment methods provide hope for a cure, triggering signs of posttraumatic growth (PTG). During the treatment process, patients reassess the meaning of life, gaining a more positive and resilient attitude toward life. However, excessively high expectations for a cure may lead to heightened anxiety during treatment, particularly when treatment outcomes do not meet expectations. 25 In such cases, patients’ anxiety and fear may intensify, destabilizing their emotions during the treatment process. 25 Therefore, although patients hope to achieve a cure through CAR-T cell therapy, they require scientific and accurate guidance from health care professionals to develop a rational perspective on treatment outcomes, reducing unrealistic expectations. The emotional complexity experienced by patients receiving CAR-T cell therapy indicates the potential benefit of introducing professional psychological counsellors at the appropriate juncture and offering psychological counselling to patients in need, such as cognitive behavioural therapy, positive thinking, stress reduction training, and other techniques to alleviate psychological distress and stress. 26

The multidimensional care needs of patients highlight the important role of the social support network. Health care professionals, family members, colleagues, friends, and fellow patients play varying degrees of roles in the patient’ treatment process. In the face of a complex health care journey and a constrained medical resource environment, collaborative management among stakeholders can become a key force in optimizing comprehensive process management. Individuals from different professional backgrounds can utilize the patient journey map to systematically track the patient's stage in CAR-T cell therapy systematically; analyse their individual characteristics, behavioural patterns, and care needs; and clarify the roles and responsibilities of stakeholder. This enables the provision of comprehensive care and support services for the patient. In the psychological coping process of patients receiving CAR-T cell therapy, health care professionals and family members are the two most important sources of support. 27 Continuous communication with medical teams, as well as encouragement, companionship, and care from family members, are crucial sources of confidence for patients. These findings suggest that in the full-process management of CAR-T cell therapy, family support should be valuable. Increasing the involvement of family members and developing family support programs are great suggestions. Disease cure is the core need of patients receiving CAR-T cell therapy, as well as the ultimate goal of this treatment journey. Patient-centred comprehensive process management is a critical pathway for achieving this goal.

Implications for nursing practice and research

As the indications for CAR-T cell therapy expand and the number of patients receiving therapy increases, there is an urgent need for clinics to provide patient-centred care services with the objective of optimizing patients' quality of life and health outcomes. In light of the touch-points and pain points identified in patient journey mapping, the following aspects should be considered in future improvements to the quality of management in all aspects of CAR-T cell therapy: 1) Patient screening period: optimize the screening and assessment process to reduce unnecessary tests and waiting time. Promote multidisciplinary teamwork to improve the accuracy of risk prediction. Provide patients with detailed health counselling and psychological guidance services to reduce disease uncertainty. 2) Cell harvesting period: provide a comfortable cell harvesting environment to improve the collection experience. Provide a transparent window for the entire process of CAR-T cell therapy preparation and counsellors to strengthen patients' psychological support. 3) Lymphodepletion preconditioning period: provide a personalized care plan to predict and manage possible side effects in advance. Optimize post-chemotherapy supportive care and provide psychological supportive interventions. 4) Infusion period: help patients understand the risks of infusion through detailed risk communication and psychological counselling and provide coping strategies and training. Build a CAR-T cell therapy post-infusion emergency response team to provide rapid and effective intervention for the management of complications. Develop an intelligent monitoring system that automatically detects and warns of early signs of serious complications to reduce errors and delays in manual monitoring. 5) Follow-up period: establish a one-stop CAR-T cell therapy rehabilitation centre to enhance the patient experience. Introduce electronic health records and artificial intelligence technology to improve the efficiency and accuracy of the diagnosis and treatment process. Create a CAR-T cell therapy patient support network or community so that patients can share their experiences and support with each other.

Limitations

This study has several limitations. First, all participants were recruited from hematology wards in a tertiary hospital in mainland China. Therefore, some bias in the selection of the CAR-T cell therapy sites involved in this study may have been introduced. Second, the patients' responses to the open-ended questions were short, providing limited information regarding their experiences and preferences for the process of CAR-T cell therapy delivery. Finally, due to individual patient factors, this study failed to include information regarding the experiences and needs of patients who failed CAR-T cell therapy, which needs to be considered in future studies. In the future, a multi-centre and longitudinal study should be conducted.

Conclusions

Patients receiving CAR-T cell therapy exhibit a range of emotional responses and multidimensional care needs at various stages of treatment. It is imperative that medical personnel recognize and address these needs. The core category of this study is curing the disease. All patients generally hope to achieve a cure and a new lease on life through CAR-T cell therapy, although some have unrealistic treatment expectations, which require positive guidance from medical staff. Patient journey mapping could serve as a review and audit tool or a mechanism for providing proactive patient-centred care.

CRediT authorship contribution statement

Minjie Liu: Conceptualization, Investigation, Methodology, Data Curation, Formal analysis, Writing – Original draft, Project administration. Juan Pan: Methodology, Interpretation, Reviewing & Editing. Hui Li: Methodology, Investigation, Data Curation. Chen Xie: Interpretation, Writing, Reviewing & Editing. Yi Fan: Figure editing. All authors had full access to all the data in the study, and the corresponding author had final responsibility for the decision to submit for publication. The corresponding author attests that all listed authors meet authorship criteria. Yun Fang: Writing – Original and Revised draft preparation, overall supervision, Project administration. All authors have read and approved the final manuscript.

Ethics statement

The study was approved by the Research Ethics Review Committee of the Ethics Committee of Tongji Medical College of Huazhong University of Science and Technology (Approval No. 2025-0005) and was conducted in accordance with the 1964 Helsinki Declaration and its later amendments or comparable ethical standards. All participants provided written informed consent.

Data availability statement

Data supporting the findings of this study are available from the corresponding author, FY, upon reasonable request. These data will not be made public as the privacy and ethical restrictions.

Declaration of generative AI and AI-assisted technologies in the writing process

No Al tools/services were used during the preparation of this work.

Funding

This study received no external funding.

Declaration of competing interest

The authors declare no conflict of interest.

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Supplementary data

The following is the Supplementary data to this article: Multimedia component 1 Multimedia component 1

Acknowledgments

The authors gratefully thank all participants in this study.

Supplementary data to this article can be found online at https://doi.org/10.1016/j.apjon.2025.100772 .