Mapping the symptom management journey across the treatment cycle for breast cancer patients

Abstract

The aim of this study is to identify the multidimensional needs of breast cancer patients in symptom management using a patient journey map, providing an evidence-based foundation for optimizing nursing interventions. This descriptive qualitative study recruited 15 breast cancer patients from a tertiary hospital in Hefei for semi-structured interviews between January and August 2024. Data were analyzed using Colaizzi’s 7-step method to construct a comprehensive journey map. The symptom management journey comprised 3 phases: screening and diagnosis, the perioperative period, and the ongoing treatment phase. Twenty-two themes were categorized into tasks, emotions, and pain points. Tasks included symptom detection and rehabilitation; emotions encompassed generalized anxiety and stigma; and pain points highlighted barriers like symptom misinterpretation and the risk of loss to follow-up. The map visually illustrated the dynamic evolution of patient needs. The findings highlight distinct stage-specific patterns in patients’ needs and barriers during symptom management. The patient journey map serves as a structured framework for identifying key intervention nodes and supporting more targeted, stage-oriented nursing care.

1. Introduction

Data from 2022 show that breast cancer ranks as the second most common cancer among women in China.^[1] In addition, the 5-year survival rate for patients has reached 82%.^[2] This high incidence, coupled with a relatively favorable survival prognosis, has made long-term symptom management for breast cancer survivors a critical issue that urgently needs to be addressed in both clinical and public health domains.^[3] Comprehensive treatment for breast cancer includes surgery, radiotherapy, chemotherapy, endocrine therapy, and so on, which are often accompanied by various specific symptoms. These symptoms manifest not only as physical changes and impaired fertility but also frequently lead to psychological issues such as anxiety, depression, and even fear of death, thereby severely impacting patients’ overall quality of life.^[4,5] Identifying and addressing patients’ symptom management needs throughout the entire treatment cycle is a key factor in promoting their recovery. Although breast cancer patients commonly exhibit significant clinical symptoms, existing research still lacks in-depth and detailed exploration of the actual experience of these symptoms.^[6] Currently, most studies approach the issue from the patient’s perspective while overlooking the influence of healthcare experiences on medical behaviors and adherence. This limitation not only prevents healthcare providers from fully understanding patients’ true needs and treatment experiences but may also reduce patients’ ability to cope with and adapt to cancer, thereby negatively affecting their prognosis.^[7] The patient journey map is a visual tool centered on the patient, depicting their experiences, encountered obstacles, and facilitating factors in chronological order throughout the diagnosis and treatment process. By carefully analyzing fluctuations in patients’ emotions, behavioral changes, and evolving needs during their healthcare journey, this tool can provide evidence for improving healthcare processes and service quality.^[8] Currently, approximately half of the relevant studies abroad focus on oncology.^[9] Domestic explorations have primarily concentrated on cancers with more complex disease courses and suboptimal patient experiences, such as laryngeal cancer and lung cancer.^[10–13] Research on patient journey maps for breast cancer in China is still in its early stages. Existing findings are mostly limited to specific treatment phases or single-dimensional needs, failing to achieve a comprehensive and multilayered integration of the entire patient experience.^[14] This study adopts the patient journey map research method to comprehensively examine key issues related to symptom management throughout the entire diagnosis and treatment process for breast cancer patients, aiming to identify critical points for nursing interventions. While existing research on breast cancer patient journeys in China is often confined to specific treatment stages or isolated clinical needs, this study contributes to the field by providing a holistic, multidimensional perspective – integrating physiological, psychological, and social dimensions across the entire treatment continuum. Specifically, by visualizing the dynamic evolution of symptoms and patient experiences, this research transcends static quality-of-life assessments. The aim of this study is to identify the evolving multidimensional needs and critical barriers faced by breast cancer patients in symptom management across the entire treatment trajectory using a patient journey map approach. This study is also the first to integrate symptom trajectory visualization with nursing intervention nodes within a patient journey framework in Chinese breast cancer care.

2. Materials and methods

2.1. Data collection

The study employed purposive sampling, taking into consideration key variables such as patients’ age, cultural background, disease subtype, and treatment stage, in order to select a sufficiently representative sample. Based on purposive sampling, breast cancer patients who underwent radical mastectomy at the breast surgery department of a tertiary hospital between January and August 2024 were recruited to form the study cohort. The sample size was determined based on data saturation, defined as the point at which no new codes, categories, or thematic insights emerged from the interview data. In this study, the thematic framework was initially established after 12 cases; the subsequent and final 3 interviews (N13–N15) yielded no additional insights beyond the existing categories, thereby confirming that data saturation had been achieved.

2.1.1. Inclusion criteria

1. Age ≥18 years;

2. Newly diagnosed primary breast cancer;

3. More than 1 month postsurgical treatment;

4. Fully informed about their condition;

5. Voluntarily signed the informed consent form.

2.1.2. Exclusion criteria

• 1.Comorbid end-stage conditions such as multiple organ failure;
• 2.Presence of psychiatric disorders or severe sensory/perceptual impairments.

The study followed a maximum variation sampling strategy to ensure heterogeneity in demographic characteristics (age, marital status, educational background, occupation). After obtaining ethical approval and strictly adhering to the informed consent process, the sample size was determined based on data saturation – interviewing continued until no new themes emerged. Ultimately, 15 cases of modified radical mastectomy patients were enrolled and coded sequentially as N1 to N15 according to the order of enrollment. Baseline characteristics are presented in Table 1.

Table 1.

General information of the interviewees (n = 15).

Code	Age (yr)	Gender	Marital status	Education level	Number of children	Residence	Occupation	Type of medical insurance	Surgical approach	Phase (treatment stage)
N1	50	Female	Married	High school	1	Urban	Salesperson	Local Employee Medical Insurance	Total mastectomy	2 cycles of chemotherapy
N2	47	Female	Married	Primary school	2	Rural	Worker	Non-local New Rural Cooperative Medical Scheme	Breast-conserving surgery	4 cycles of chemotherapy
N3	44	Female	Married	Primary school	2	Rural	Farmer	Non-local New Rural Cooperative Medical Scheme	Total mastectomy	6 cycles of chemotherapy + 10 cycles of targeted therapy
N4	44	Female	Divorced	Junior college	1	Urban	Teacher	Non-local Employee Medical Insurance	Total mastectomy	3 cycles of chemotherapy
N5	53	Female	Married	Primary school	1	Rural	Unemployed	Local Resident Medical Insurance	Total mastectomy	6 cycles of chemotherapy
N6	61	Female	Married	Bachelor’s degree	1	Urban	Retired	Local Employee Medical Insurance	Total mastectomy	3 cycles of chemotherapy
N7	50	Female	Married	Junior high school	2	Urban	Retired	Non-local Employee Medical Insurance	Total mastectomy	8 cycles of chemotherapy + 4 cycles of targeted therapy
N8	56	Female	Married	Primary school	1	Rural	Unemployed	Non-local New Rural Cooperative Medical Scheme	Total mastectomy	8 cycles of chemotherapy
N9	54	Female	Married	Technical secondary school	2	Urban	Retired	Local Employee Medical Insurance	Total mastectomy	7 cycles of chemotherapy
N10	35	Female	Married	High school	1	Urban	Self-employed	Non-local Resident Medical Insurance	Total mastectomy	5 cycles of chemotherapy
N11	33	Female	Married	High school	2	Urban	Unemployed	Local Resident Medical Insurance	Total mastectomy	4 cycles of chemotherapy
N12	40	Female	Married	Junior high school	1	Rural	Unemployed	Non-local New Rural Cooperative Medical Scheme	Total mastectomy	2 cycles of chemotherapy
N13	57	Female	Married	High school	3	Urban	Retired	Non-local Employee Medical Insurance	Total mastectomy	5 cycles of chemotherapy
N14	29	Female	Unmarried	Postgraduate	0	Urban	Financial analyst	Local Employee Medical Insurance	Total mastectomy	3 cycles of chemotherapy
N15	63	Female	Married	Primary school	1	Rural	Farmer	Non-local New Rural Cooperative Medical Scheme	Total mastectomy	6 cycles of chemotherapy

• 3.Male breast cancer patients. The exclusion of male patients was a deliberate methodological choice to ensure sample homogeneity. Given the rarity of male breast cancer and the distinct physiological and psychosocial experiences these patients encounter compared with their female counterparts, focusing on a female cohort allows for the development of a more representative and targeted nursing intervention framework.

The study was approved by the Hospital Ethics Review Board (Approval No.: YX2023‑119) and strictly complied with ethical principles to protect participants’ privacy. All participants provided informed consent and voluntarily took part in the study.

2.2. Research methods

The construction of the journey map followed a systematic process within a descriptive qualitative design framework, aimed at objectively mapping the diagnosis and treatment trajectory to identify core needs. Concurrently, Colaizzi’s 7-step phenomenological analysis methodology was employed to rigorously extract the depth of patients’ lived emotional experiences, ensuring the resulting journey map reflects both clinical reality and personal essence.^[15] Specifically, barriers in symptom management were analyzed in depth, and key nodes influencing the improvement of nursing quality were pinpointed. In accordance with the reporting standards for qualitative research, this study integrated multiple methods – including expert consultations, participatory observation, and in-depth interviews – to develop and validate the research framework.^[16]

2.2.1. Interview guideline development process

The development of the interview guidelines followed these steps: based on the research objectives and an extensive literature review, a preliminary version of the interview guidelines was drafted with input from experts. Subsequently, 2 patients were selected for pilot interviews, and the findings were combined with opinions from multidisciplinary experts in breast surgery, nursing, chemotherapy, oncology, and rehabilitation. Finally, the research team engaged in repeated discussions and revisions to finalize the interview guidelines.

The finalized interview guidelines are as follows:

1. Please recall your treatment and recovery journey since being diagnosed. What stage of treatment are you currently in, and what are your next steps?

2. How well do you understand the symptoms of breast cancer? What methods do you usually use to manage these symptoms?

3. Around your most recent treatment session, which symptoms bothered you the most? How did they affect your daily life?

4. In managing your symptoms, which methods or conditions have been helpful to you? Conversely, which factors tend to worsen your symptoms?

5. What has been the biggest challenge you have faced during this process, and how have you dealt with it?

6. In which areas do you hope the healthcare team could provide more support or make improvements?

2.2.2. Data collection and quality control methods

The researchers were all trained in qualitative research and possessed extensive interview experience. As they routinely participated in the daily care of patients, a certain level of trust had already been established with the study participants. Prior to the formal interviews, the researchers thoroughly explained the study’s purpose, methods, and potential risks to the patients after gaining an in-depth understanding of their medical condition. Written informed consent was obtained only after participants fully understood and agreed to participate.

Throughout the research process, all personal information was anonymized and strictly confidential, ensuring the privacy and security of the participants. Following a systematic literature review and multiple rounds of team discussions, the study developed a thematic framework covering the entire patient journey from initial consultation to follow-up visits, aiming to comprehensively capture the patient healthcare experience.

To dynamically capture patients’ symptom management experiences during critical phases such as screening/diagnosis, the perioperative period, and chemotherapy/targeted therapy, semi-structured interviews were conducted at various time points. This approach ensured both the temporal completeness and the targeted relevance of the data.

Interviews were conducted in a quiet, private conference room to ensure confidentiality and minimize distractions. With written informed consent obtained, all interviews were audio-recorded in their entirety. During the interviews, researchers strictly adhered to the semi-structured guideline, asking questions naturally based on the participant’s narrative, avoiding any form of leading description, and encouraging participants to express their feelings and experiences authentically and fully. All semi-structured interviews were conducted face-to-face in a quiet, private conference room to ensure confidentiality and minimize distractions. The mean duration of the interviews was 31.5 minutes (range: 20–40 minutes).

The research team consisted of clinical oncology nurses trained in qualitative research, which facilitated the establishment of trust with participants. To ensure objectivity in data interpretation, the researchers practiced “bracketing” by setting aside personal preconceptions and avoiding leading questions during interviews. This approach ensured that the findings accurately represented the participants’ authentic voices while minimizing the potential impact of researcher bias.

2.2.3. Data analysis methods

After the interviews were completed, all audio recordings were transcribed verbatim into text, supplemented with nonverbal information based on field notes. The textual data were managed using MAX Qualitative Data Analysis 2020 software (VERBI Software). The analysis followed Colaizzi’s 7-step phenomenological method: reading all original texts in their entirety; identifying significant statements; formulating meanings and coding these statements; aggregating related codes into clusters of themes; developing an exhaustive description of each theme; distilling the fundamental structure or essence of each theme; and validating the findings by returning them to the participants for verification.

To ensure objectivity and consistency, all data were independently organized and analyzed by 2 researchers. Any discrepancies in theme identification or categorization were resolved through iterative peer-debriefing and team discussions. When consensus could not be reached, a third senior researcher acted as an arbiter to review the evidence and finalize the codes based on clinical relevance. Furthermore, researchers practiced “bracketing” – setting aside personal preconceptions as oncology nurses – to ensure that the interpretation remained grounded in the participants’ authentic voices.

3. Results

A total of 20 interviews were conducted. First, one interview was carried out with each of the 15 participants. Subsequently, to ensure the completeness of information and to verify the consistency of the information gathered, 6 participants (N3, N5, N6, N8, N13, and N14) were selected from the initial 15 for a second round of interviews. The 15 female participants (aged 29–63) represented diverse socioeconomic backgrounds and treatment stages, ranging from early chemotherapy to long-term targeted therapy.

Emotional experiences, though expressed differently across phases, largely revolved around 3 core psychological axes: survival anxiety, body image disruption, and recurrence uncertainty.

3.1. Construction process of the journey map

The analytical framework of this study consists of 2 interconnected components: a timeline and experiential dimensions. The timeline spans 3 stages: screening and diagnosis, perioperative, and ongoing treatment. The experiential dimensions are represented by sub-themes extracted from the interviews. Together, they form the complete analytical structure. During the thematic extraction process, a single theme may encompass multiple sub-themes, reflecting the hierarchical nature of the concepts.

For the analysis, 3 primary dimensions were identified: tasks, emotions, and pain points. The task dimension was used to code patients’ actions, process nodes, and tool usage. The emotion dimension focused on identifying emotional expressions, nonverbal cues, and contradictory statements. The pain point dimension corresponded to the gaps between needs and obstacles, frequently mentioned distresses, and unmet needs.

Based on clinical experience, literature review, and expert consultation, the shifts in patient needs, core barriers, and existing opportunities at various stages of symptom management were systematically organized and visualized in the form of a journey map. Finally, patient representatives were invited to review the thematic framework and provide feedback on the categorization of data to refine the details of the visualization, ensuring the accuracy and consistency of the journey map’s content.

Following a standardized methodology, this study mapped the breast cancer patient journey. A total of 22 themes were systematically extracted from the 3 perspectives of tasks, emotions, and pain points. These themes comprehensively reflect patients’ main tasks, emotional fluctuations, and primary challenges across different stages of the disease course. Building on this, a visual narrative was integrated, culminating in the complete journey map shown in Figure 1.

Figure 1.

The journey map for symptom management across the entire treatment cycle in breast cancer patients. The horizontal axis represents the chronological trajectory of treatment stages. The vertical axis reflects experiential dimensions, including tasks, emotions, and pain points. Arrows indicate dynamic transitions. Color gradients represent the intensity of symptom burden. Task includes diagnosis and treatment, common symptoms and physiology requirements; emotion: psychology, society requirements; related personnel include relatives, friends, medical care personnel, and other personnel.

3.2. Screening and diagnosis phase

3.2.1. Task: symptom detection and clinical diagnosis

1. Detecting abnormal symptoms

Patients often presented with distinct early symptoms, such as lumps in the breast or axilla, recurrent eczema around the nipple, or bloody nipple discharge. However, a lack of disease-related knowledge made these symptoms prone to being overlooked or misattributed:

N3: “I accidentally felt a lump while lying in bed a year ago. It wasn’t painful or itchy, so I thought it was nothing serious. I never considered it might be breast cancer.”

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N8: “I had bloody nipple discharge for over half a year. I kept it hidden from my daughter because I was afraid it might be a serious illness requiring a lot of money, and I didn’t want her to spend on me.”

• 2.Clinical diagnosis

Interview results revealed that some patients tended to question the basis of their diagnosis and struggled psychologically to accept the reality of having breast cancer:

N1: “It’s just a lump in the breast, not painful or itchy. How could it possibly be breast cancer?”

N6: “I just wore a bra that was too tight, which chafed the skin around my nipple. How could that be breast cancer?”

3.2.2. Emotions: prevalent anxiety, confusion, and guilt

• 1.Psychological distress and existential uncertainty

A considerable number of patients exhibited marked anxiety symptoms:

N2: “Ever since I had the puncture biopsy, I just knew it had to be malignant. I couldn’t sleep at night, and my mind would race with all sorts of thoughts ...”

N5: “When the department head in the outpatient clinic said my lump didn’t feel good and that I needed to be hospitalized for surgery, I was overwhelmed with worry. My son isn’t married yet, and my husband passed away from lung cancer a few years ago. What am I going to do?”

N11: “Both my children are still so young. I’m so worried—if I really have breast cancer, who will take care of them? What if their studies go unsupervised?”

Concerns about death, metastasis, or recurrence constituted a major psychological burden for patients:

N5: “When the doctor told me I was diagnosed with breast cancer, it felt like being struck by lightning, and that’s not an exaggeration.”

N6: “I searched for a lot of information about breast cancer on TikTok myself and followed several authoritative experts. I’m really afraid my pathology results will show triple-negative breast cancer—that would be terrible.”

N13: “I know a few years ago, a celebrity who was a singer passed away from a breast cancer recurrence. Whenever I come across such news, I get absolutely terrified.”

• 2.Guilt

The interview results indicated that a heavy family caregiving burden often led patients to experience feelings of guilt toward their families:

N8: “My daughter just had her second child and is under a lot of pressure. Not only can I not help her with the baby, but now she has to spend money on my treatment. Sigh ...”

N12: “While I’m here in the hospital, my son is in his final year of high school and has no one to accompany him for support. My husband is also at home alone with no one to look after him. What will happen to our family?”

N15: “We rural folks don’t have much savings, and health insurance covers very little. This is going to cost a lot of money in the future. Thinking about it, I don’t even want to continue treatment.”

3.2.3. Pain points: symptom misjudgment often accompanies erosion of doctor–patient trust

1. Entrenched high-risk behavioral patterns

Due to insufficient disease awareness and symptom recognition ability, patients often overlooked or misinterpreted early signs of breast cancer, frequently leading to delays in seeking medical care:

N3: “I actually felt the lump a long time ago, but it didn’t hurt or itch. Going to the hospital for a check-up costs money—how could I bring myself to spend it?”

N6: “My nipple had eczema for three or four months without getting better, but I read online that breast cancer usually involves a lump. Since I didn’t have a lump, I was sure it wasn’t that.”

N14: “My job is very demanding with frequent overtime and high mental stress, but there’s no other way. If I don’t work, how will I earn money?”

• 2.Crisis of trust in diagnosis

N6: “I’ve been seeing the dermatology department all along for this nipple eczema. Now it’s suspected to be breast cancer—whose advice should I follow?”

N14: “I’m so young, and last year’s company-organized physical examination showed everything was normal. The health check-up center said it was just mammary gland hyperplasia. How can it be cancer at your hospital!”

In summary, the screening and diagnosis phase is characterized by a significant knowledge gap in symptom recognition and intense psychological shock, leading to pervasive survival anxiety and a crisis of trust in the initial diagnosis.

3.3. Perioperative period

3.3.1. Tasks: optimizing and improving quality of life

1. Challenges in symptom management

Most patients experienced distressing symptoms postoperatively, including incision pain, restricted movement in the affected limb, decreased muscle strength, disturbed self-image, and poor sleep:

N7: “The toughest part was right after surgery when I came back from the recovery room. My entire arm was numb, the chest binder was unbearably tight, making it hard to breathe, and my sleep quality was terrible.”

N9: “After the surgery, my incision hurt terribly. The drainage tube got blocked, so the doctor had to remove the stitches and suction out a lot of blood clots. It was pure agony.”

N14: “Every time the doctor changed my dressing after surgery, I asked my husband to leave the room. I can’t accept how I look now, and I don’t want him to see it either!”

• 2.Building a care support system

Postoperative care for patients was primarily provided by their family members:

N2: “My husband helped me empty and record the drainage fluid every day.”

N8: “My children took time off work/school to stay with me in the hospital.”

N10: “My sister knew I was vomiting badly from chemotherapy, so she cooked very light meals every day, trying everything to help me get proper nutrition.”

• 3.Acquiring self-management skills

Patients gradually learned methods for self-managing their symptoms by adhering to medical guidance:

N6: “The nurse told me to exercise my fingers and wrist on the first day after surgery, and to move my elbow joint by the third day...”

N10: “The medical staff taught me not to lift my shoulder for a week after surgery, to elevate my arm on my body while sleeping every night to prevent swelling, and to walk around more to prevent blood clots. I followed all their instructions.”

N13: “The nurse told me not to drink greasy broths, to avoid spicy and irritating foods, and to drink plenty of water.”

3.3.2. Emotions: symptom distress and excessive worry

1. Distress from symptom burden

N9: “The drainage tube got blocked, and they had to remove my stitches. The pain was excruciating; I couldn’t sleep for several nights.”

N11: “My arm has been aching with a sore, swollen pain. The doctor said it’s normal, but it’s very distressing.”

• 2.Concerns about financial burden

N8: “The surgery already cost a lot of money. I hear there will be chemotherapy and targeted therapy later on too. I’m afraid I won’t be able to afford it.”

N12: “I can’t earn money now that I’m sick. My husband is supporting the family all by himself. It’s just... hard.”

• 3.Concerns about surgical prognosis

N3: “I’ve had the surgery and suffered through it, but I don’t know how long I have left to live?”

N7: “I don’t know if the surgery removed all the tumor? Will it come back in the future?”

3.4. Pain points: symptom burden and barriers to reporting

1. Heavy burden of symptom control

N5: “Not being able to move this arm is awful. I need help with everything. I’m afraid this arm might be useless forever.”

N14: “I’m so young, I definitely need to return to the workplace. How can I face people like this? When I think about this, during my lowest moments, I don’t even want to live.”

• 2.Poor adherence to voluntary symptom reporting

N3: “If I feel unwell at home, I just endure it. I only tell my family when I really can’t take it anymore.”

N8: “My daughter looks after the baby all day, and my son-in-law stays with me at night. They have it hard enough. If something happens at night, I don’t want to make them get up.”

N13: “Being sick means you have to endure some hardship. At our age, we can tolerate it ourselves and don’t want to trouble others.”

In summary, the perioperative period is dominated by acute physical symptom distress and the transition to a family-centered care system, while patients face the dual challenge of functional limitations and the burden of voluntary symptom reporting.

3.5. Ongoing treatment phase

3.5.1. Tasks: coordinating management of treatment side effects and quality of life

1. Management strategies for chemotherapy side effects

During the ongoing treatment phase, most patients faced a cluster of complex adverse reactions, primarily involving gastrointestinal issues, neurotoxicity, and functional decline, which often led to a recurrence of negative coping tendencies:

N4: “After chemotherapy, the nausea was terrible. I vomited all night and couldn’t sleep. The anti-nausea IV the doctor prescribed didn’t help much; vomiting until you feel utterly drained is disheartening.”

N7: “Before the third chemo session, my blood test showed very high liver enzymes. I had to get liver-protective IV drips for a whole week. It was pure misery.”

N14: “After two chemo sessions, I’ve lost almost all my hair. Seeing clumps of hair on my pillow is heartbreaking. I don’t dare see anyone without wearing a wig.”

• 2.Long-term adaptation and rehabilitation management of symptoms

N6: “Even though I’ve had the surgery, this illness requires long-term observation and management. I need regular check-ups, follow the nurses’ and doctors’ instructions for arm function exercises, avoid lifting heavy objects, and keep this up for at least six months after surgery.”

N11: “With every round of chemo, I’m very careful about my diet, trying to choose light, easily digestible foods. I also drink some lemon water after meals to help ease the nausea.”

3.5.2. Emotions: anxiety, confusion, and social withdrawal

1. Prolonged psychological burden and social withdrawal

Most patients expressed worry and fear regarding the possibility of breast cancer recurrence:

N2: “I had breast-conserving surgery. I’ve heard the risk of recurrence is higher?”

N6: “My right breast was removed. I don’t know if the left one might develop it in the future.”

N13: “I’ve heard that if there’s no recurrence within five years after treatment ends, you’re in the clear. I hope I’m not that unlucky.”

N13: “Aside from close family, I’ve kept it a secret from many people. I don’t want others to know I’m sick.”

N14: “I’m really afraid that when I return to work, my colleagues will look at me differently or talk about me behind my back.”

• 2. Uncertainty about disease prognosis

N8: “It feels like life is just like this now. I don’t have much feeling about the future.”

N10: “I have to come to the hospital every two weeks for the same IV drip. I don’t even know if there will be other treatments after this.”

3.5.3. Pain points: cyclical challenges and lack of support systems

1. Long-term nature of symptom manifestation

Interviews indicated that during the ongoing treatment phase, most patients’ symptoms exhibited cyclical fluctuations and persisted over the long term:

N7: “The discomfort is still quite strong. At first, after surgery, it was arm soreness, limited movement, constant fatigue, and poor sleep. Then, when chemo started, the vomiting was severe, and I couldn’t eat. Every time after the white blood cell-boosting shots, my bones ached so badly at home that I couldn’t sleep for several nights, all while having to keep up with functional exercises. It’s been truly agonizing.”

N9: “Every time I go home after chemo, I’m nauseous, vomiting, and can’t eat. Just as I start to feel a bit better, it’s almost time for the next chemo session. I dread coming to the hospital every single time.”

• 2.Potential risk of loss to follow-up

N1: “We live in a rural area. Getting to the hospital requires a very long bus ride each time; it’s a big hassle. I’m wondering if I could just get chemotherapy at the local hospital instead...”

N4: “My husband works away from home, and I live with him. Going to your hospital isn’t very convenient, so I get my PICC line maintenance done at a nearby hospital each time.”

In summary, the ongoing treatment phase is defined by cyclical chemotherapy-induced toxicities and long-term psychosocial challenges, such as stigma and fear of recurrence, necessitating continuous adaptation and enhanced external support.

4. Discussion

4.1. Patients’ physical, psychological, and social needs demonstrate dynamic changes alongside symptom progression

This study found that the multidimensional needs of breast cancer patients evolve with the progression of their symptoms, which aligns with the conclusions of researchers such as Pan Lu^[17] and Li Jiaping.^[18] Building on this, healthcare professionals can utilize the patient journey map to implement systematic, continuous, and stage-specific nursing care throughout the different phases of the disease. Specifically, the journey map can be effectively integrated into standard clinical workflows by serving as a visual education tool during patient admission to set realistic expectations for the treatment trajectory. Furthermore, it can be utilized as a structured assessment framework during daily nursing rounds, enabling nurses to systematically evaluate patient symptoms and emotional fluctuations based on the map’s predefined dimensions, thereby ensuring that no critical needs are overlooked. Due to the lack of specific early symptoms in breast cancer, which are easily confused with benign lesions or common skin conditions, many patients experience sudden psychological shock upon diagnosis, primarily characterized by late diagnosis, severe anxiety, and pervasive uncertainty. To address this, it is recommended that healthcare professionals intensify public health education to improve awareness and recognition of early symptoms, thereby encouraging timely medical consultation. Furthermore, systematically assessing the level of psychological stress patients experience during the diagnostic phase before treatment begins can enhance their adaptability and mental preparation for the subsequent treatment process. Symptom management should be conceptualized as a dynamic adaptation process rather than episodic intervention.

During the perioperative period, patients’ quality of life is significantly impacted by acute pain, physical functional limitations, disturbed self-image, and sleep disturbances, creating an urgent need for professional symptom management and continuous care. It is recommended that healthcare professionals encourage patients to use the journey map to record changes in their symptoms, responses to medications, and medication adherence. This documentation can serve as a basis for dynamic assessment and clinical decision-making. In addition, collaborating with patients’ families to establish an effective social support network is crucial.

In the ongoing treatment phase, patients often face multiple challenges, including adverse reactions from chemotherapy, needs for functional rehabilitation, and fear of disease recurrence. In response, healthcare professionals should provide systematic anticipatory guidance, clearly explaining potential side effects, teaching patients self-monitoring techniques and when to initiate early rehabilitation exercises. It is also essential to help patients recognize their anxiety and fears, equipping them with coping strategies such as deep breathing and mindfulness meditation, or referring them to specialized psychological support channels in a timely manner to enhance their proactive coping abilities.

4.2. The visual presentation of the full-course symptom trajectory in breast cancer patients facilitates accurate identification of key support nodes and critical needs by healthcare professionals

Based on the chronological framework of breast cancer diagnosis and treatment, this study identified key symptom clusters at various disease stages through in-depth interviews. The results are highly consistent with the findings of scholars such as Ciria-Suarez et al.^[19] This study introduces the patient journey map to systematically visualize the continuous evolution of symptoms in breast cancer patients. The core advantage of this method lies in its ability to completely document the dynamic trajectory of symptoms, thereby overcoming the limitation of tools such as the Functional Assessment of Cancer Therapy–Breast scale,^[20] which can only assess quality of life at specific time points. Compared to previous studies that often relied on rough chronological divisions based on treatment phases (e.g., perioperative, chemotherapy) to categorize symptoms,^[17,21] the patient journey map not only systematically reveals the intrinsic connections between symptoms, treatment plans, and nursing interventions but also dynamically captures continuous changes in patients’ emotional experiences, social support, and healthcare perceptions.

During the screening and diagnosis phase, local symptoms such as nipple eczema, ulceration, or discharge not only cause persistent physical discomfort but also significantly increase psychological burden. Moving into the perioperative period, disturbed self-image combined with functional limitations of the affected limb often lead to issues such as mobility impairment, sleep disturbances, and emotional distress. These intertwined problems frequently form more complex symptom clusters, exacerbating the patient’s overall illness experience.

This study shows that breast cancer patients during chemotherapy often face a series of physiological symptoms and psychological stress responses.^[22] These reactions directly exacerbate physical problems such as cancer-related fatigue and sleep disturbances while significantly impacting emotional states. By applying the patient journey map, the dynamic evolution of such symptoms and experiences can be continuously tracked. This enables a systematic analysis of patients’ comprehensive needs throughout the treatment process, providing empirical evidence for implementing targeted interventions.

4.3. Identifying core barriers in symptom management for breast cancer patients and exploring potential rehabilitation opportunities

This study identified several specific gaps in symptom management across different stages of the patient journey. First, during the screening and diagnosis phase, there is a gap in patients’ ability to recognize and correctly interpret early symptoms, which often leads to delayed healthcare-seeking behavior. Second, in the perioperative period, a discrepancy exists between the high symptom burden experienced by patients and their limited willingness or ability to actively report symptoms, resulting in under-recognition of unmet needs. Third, during the ongoing treatment phase, patients face insufficient long-term support for managing persistent and cyclical symptoms, particularly in coping with treatment-related side effects and psychological distress. In addition, gaps in continuity of care are evident, especially among patients at risk of loss to follow-up due to geographical, financial, or logistical barriers. These findings are consistent with related international research^[23] and highlight critical issues requiring urgent attention in current nursing practice.

In this context, the patient journey map provides a structured approach to visually and systematically identify key barriers and opportunities for improvement throughout the treatment process. The study’s approach is detailed as follows:

• This research employed ward-based immersion observations, integrating clinical behavioral records with in-depth interview data. This allowed for a multidimensional analysis of patients’ postoperative functional impairments, subjective experiences, and nonverbal behaviors (such as frowning, pauses in movement, etc.), thereby systematically identifying core problems in symptom management that are genuinely present yet not actively reported by patients.

• The identified core issues were categorized into 3 dimensions – physical (e.g., pain, limb function limitation), psychological (e.g., anxiety, fear), and social (e.g., family communication barriers, financial burden) – and their intervention priority was assessed based on severity and frequency. Subsequently, by analyzing the gap between existing nursing measures and patients’ actual experiences, and integrating literature evidence with multidisciplinary expert opinions, targeted nursing optimization strategies were systematically developed.

• 3.Based on expert panels and systematic discussions, this study constructed a breast cancer patient journey map, clearly defining core problems, improvement opportunities, and support networks for each diagnostic and treatment stage. To address the identified key issues, digital platforms (such as intelligent follow-up and online decision-support tools)^[24,25] can be integrated into routine care to enhance patient understanding and engagement in treatment; an online symptom assessment system can be developed to facilitate real-time reporting of discomfort by perioperative patients. To address persistent symptoms and the risk of loss to follow-up in the ongoing treatment phase, an intelligent recommendation system based on individual characteristics^[26] can be established to provide dietary, exercise, and psychological support plans. Furthermore, voice-interaction technology^[27] can be incorporated for information delivery, while virtual communities can be fostered to encourage narrative sharing and emotional support among patients. While these digital strategies were conceptualized within a tertiary care context, their feasibility in resource-limited or non-tertiary settings is a critical consideration. To reduce the infrastructure burden on smaller hospitals, existing and widely accessible mobile platforms, such as WeChat-based mini-programs, can be leveraged instead of developing standalone high-cost software. Furthermore, considering that a significant portion of the study population included rural residents with primary education (e.g., N2, N5, and N8), incorporating simplified user interfaces and voice-interaction technology is essential to bridge the digital divide. In resource-limited areas, these tools can function as “digital extensions” of community-based healthcare, facilitating remote symptom monitoring and reducing the necessity for frequent, costly travel to urban centers.

4.4. Implications for nursing practice: stage-specific strategies

Based on the identified symptom management trajectory and key intervention nodes, stage-specific nursing strategies can be proposed to address patients’ multidimensional needs. During the screening and diagnosis phase, nursing strategies should focus on improving symptom awareness and reducing psychological distress. Targeted health education is essential to enhance early symptom recognition and promote timely medical consultation. In addition, early psychological assessment and supportive communication should be implemented to alleviate anxiety and uncertainty following diagnosis. In the perioperative period, nursing care should prioritize symptom control and functional recovery. Strategies should include structured pain management, guidance on limb rehabilitation exercises, and continuous monitoring of postoperative complications. Furthermore, involving family members in care and providing clear instructions can strengthen the patient’s support system and improve adherence to self-management. During the ongoing treatment phase, nursing strategies should emphasize long-term symptom monitoring and psychosocial support. Patients should receive anticipatory guidance regarding treatment-related adverse effects and be trained in self-monitoring and symptom reporting. Regular follow-up, combined with accessible communication channels, can help reduce the risk of loss to follow-up and support sustained symptom management. These strategies, derived from the identified needs and barriers at each stage, provide a practical framework for translating the patient journey map into actionable nursing care.

4.5. Limitations

These strategies require future pilot testing before clinical integration. However, this study has several limitations that may influence the interpretation of the findings. First, the reliance on retrospective self-reports and observational records may introduce recall bias. This could potentially lead to an underestimation of the intensity of acute symptoms or emotional distress experienced during the initial screening and diagnosis phase. Second, because all participants were recruited from a single tertiary institution, the findings may lack broad representativeness. Specifically, the identified “pain points” and “opportunity points” (such as digital health needs) may primarily reflect the experiences of patients with access to specialized oncology resources, potentially overlooking the distinct barriers – such as limited health literacy or infrastructure gaps – faced by patients in primary or rural care settings.

To address these limitations, subsequent studies should employ mixed-methods approaches to provide more robust validation of the journey map. Future research endeavors should prioritize multicenter collaborations across various levels of medical institutions to enhance the generalizability of these thematic findings. Furthermore, there is a clear need for interventional studies to evaluate the clinical efficacy of “journey-map-informed” personalized care plans in optimizing symptom management outcomes and improving the long-term quality of life for breast cancer patients.

5. Summary

This study provides a structured framework for understanding the dynamic changes in symptom management needs among breast cancer patients across different treatment stages. By mapping patients’ experiences into 3 phases and 22 themes across tasks, emotions, and pain points, the patient journey map offers a practical tool for identifying stage-specific needs and key intervention nodes. In clinical practice, the journey map can be used to support symptom assessment, guide patient education, and improve communication between healthcare providers and patients at different stages of treatment. For example, it may help nurses anticipate common symptom clusters, monitor emotional changes, and address barriers such as delayed symptom reporting or risk of loss to follow-up. In nursing education, journey-mapping methodologies can be incorporated as case-based or scenario-based learning tools, enabling students to better understand the longitudinal patient experience and the complexity of symptom management across the treatment trajectory. Overall, this study provides a context-specific reference for improving symptom management practices and highlights the potential value of patient journey mapping in supporting more structured and stage-oriented nursing care.

Author contributions

Conceptualization: JingPing Qian, WeiMin Xu.

Formal analysis: JingPing Qian, Xiao Chen.

Data curation: WeiMin Xu, Xiao Chen.

Writing – original draft: WenQian Shao.

Writing – review & editing: WenQian Shao.