Introduction

Esophageal cancer is a highly aggressive malignancy with a substantial global disease burden. The latest epidemiological data show that China accounts for a particularly large proportion of new cases and deaths worldwide.1 At present, surgery combined with radiotherapy and chemotherapy remains the main treatment strategy for esophageal cancer.2 However, because of digestive tract reconstruction, tumor-related consumption, and immune alterations, patients commonly experience a range of postoperative symptoms, including pain, abdominal distension, dysphagia, reflux, and nutritional impairment.3 In addition, the high malignancy of esophageal cancer, together with the risks of postoperative complications and mortality, often leads to considerable psychological distress, such as anxiety and depression, and significantly compromises long-term quality of life.4 Older adults are a particularly vulnerable group, as they are more likely to have reduced physiological reserve, multimorbidity, cognitive decline, and poorer psychological resilience.5 These age-related characteristics increase the risk of postoperative complications, recurrence, functional decline, and difficulties in self-management after discharge.6 Therefore, improving postoperative outcomes and quality of life in elderly patients with esophageal cancer remains an urgent clinical challenge.

Importantly, the care needs of elderly patients after radical esophagectomy are not confined to the perioperative period, but extend across the entire disease trajectory, including diagnosis, hospitalization, and home rehabilitation.6 In this context, full-course management refers to continuous and coordinated care delivered throughout these three stages, with health education serving as a key component in supporting symptom management, treatment understanding, rehabilitation participation, and long-term self-care. Nevertheless, conventional needs assessment approaches often provide only cross-sectional or problem-oriented information and are limited in their ability to capture dynamic changes in patients’ experiences, emotions, and service needs over time. Patient journey mapping (PJM) is a patient-centered visualization tool that presents patients’ behaviors, experiences, emotional responses, and needs across the care process in chronological order, thereby identifying service barriers and opportunities for improvement. It has been widely used in nursing practice.7–9 Compared with traditional methods, PJM better captures stage-specific transitions and the interaction between patients and healthcare services, making it particularly suitable for elderly patients with esophageal cancer, whose needs are complex, evolving, and highly individualized. However, to date, no study has applied PJM to elderly patients undergoing radical esophagectomy for esophageal cancer to systematically identify their service barriers and care priorities across the full course of management. Therefore, this study used PJM to map the full-course management journey of elderly patients undergoing radical esophagectomy, in order to explore their tasks, experiences, needs, and key pain points at different stages and to provide evidence for optimizing age-appropriate, individualized, and continuous care.

Importantly, the burden of care after radical esophagectomy extends well beyond the perioperative period, as dysphagia, reflux, malnutrition, and impaired quality of life may persist long after discharge, particularly in older adults with frailty, multimorbidity, and reduced functional reserve.10,11 In this context, patient journey mapping provides a patient-centred framework for characterizing needs, emotional responses, and service gaps across diagnosis, hospitalization, and home recovery, thereby informing the development of age-adapted, individualized, and continuous care pathways.12

Objects and Methods Research Object

A purposive sampling strategy was adopted, following the principle of maximum variation. The general characteristics of the participants are shown in Table 1. This study was approved by the hospital ethics committee ((2025) Scientific Research Ethics No. (564)), and all participants signed written informed consent forms, which included consent for the publication of anonymized responses and direct quotes. Elderly patients with esophageal cancer who attended the outpatient or inpatient thoracic surgery department of a tertiary general hospital in Hebei Province between September and November 2025 were recruited. To enhance sample heterogeneity, variation was sought in age, sex, place of residence, educational level, primary caregiver, medical payment type, and disease stage. Inclusion criteria were: (1) age ≥60 years; (2) pathological diagnosis of esophageal squamous cell carcinoma or adenocarcinoma by endoscopic biopsy, with disease stage I–IV; (3) receipt of radical esophagectomy, successful discharge after surgery, and experience of home rehabilitation; (4) clear consciousness and ability to communicate effectively; and (5) awareness of the disease and voluntary participation in the study. Exclusion criteria were: (1) severe dysfunction of vital organs such as the heart, brain, or kidney; (2) other malignant tumors; and (3) severe psychiatric disorders.

Table 1 General Information of Respondents

Sample size was determined according to the principle of information saturation and the absence of new themes.10 Data collection and analysis were conducted concurrently. After the 12th interview, no new substantive codes emerged; three additional interviews were then conducted to confirm thematic stability. As no new categories or themes were identified in interviews 13–15, the dataset was considered saturated, and the final sample comprised 15 participants.

Research Methods

Patient journey mapping was developed in five steps:11 (1) gathering insights within the team; (2) establishing preliminary hypotheses regarding the patient journey; (3) investigating patients’ experiences, needs, and perceptions; (4) analysing the data to identify key patient characteristics; and (5) visually presenting the findings.

Establish a Research Group

The research team consisted of one chief thoracic surgeon, one associate chief thoracic surgeon, three thoracic surgery specialist nurses with intermediate or higher professional titles, and two Master of Nursing candidates. Before formal data collection, all team members completed standardized training on qualitative research and patient journey mapping. The training was delivered in two sessions (8 hours in total) and covered the principles of qualitative interviewing, participant observation, reflexive note-taking, PJM framework construction, coding rules, and procedures for thematic analysis. Following the training, team members participated in a mock interview and coding exercise, and only those who met the prespecified requirements for interview procedure and coding consistency entered the formal study.

Determine the Journey Map Framework

Based on the China Guidelines for Screening, Early Diagnosis and Treatment of Esophageal Cancer (2022 Edition) and other domestic and international guidelines and expert consensuses in this field,12–14 a preliminary full-course journey framework was developed. To refine the framework, a panel of five experts was convened, including two thoracic surgeons, two senior thoracic specialist nurses, and one nursing methodology expert; all held at least associate senior titles and had more than 10 years of relevant clinical, teaching, or research experience. Two rounds of structured discussion were conducted to determine the phase boundaries, core tasks, major contact points, emotional experiences, potential needs, and service barriers of elderly patients undergoing radical esophagectomy. Consensus was reached when all experts agreed on the content after revision. The final framework divided the patient journey into three stages: diagnosis, hospitalization/perioperative care, and home rehabilitation.

Determine the Interview Outline

Based on the journey map framework, the study objectives, and the relevant literature, a preliminary semi-structured interview guide was developed (supplementary file). Three elderly patients with esophageal cancer were selected for pilot interviews. The interview guide was then revised repeatedly according to the pilot results and the opinions of experts in esophageal cancer, nursing, and rehabilitation, and the final version was established. The main questions included: (1) What experiences during the diagnosis, hospitalization/perioperative period, and home rehabilitation period remain most memorable to you, and how did they affect you? (2) What needs did you have during these stages, and why were some of these needs not met? (3) What difficulties did you encounter during treatment, how did you feel at that time, and how were these problems eventually addressed? (4) In what areas would you most like help from medical staff? (5) During your treatment, what aspects of the current medical services do you think need improvement?

Data Collection

Semi-structured interviews and participant observation were used to collect the data. Before each interview, the researcher established rapport with the participant, explained the purpose and significance of the study, and obtained written informed consent. One-to-one face-to-face interviews were conducted in a quiet, clean, comfortable, and independent environment. Interviews were conducted flexibly around the interview guide, and follow-up questions were asked according to participants’ responses to encourage in-depth narration. With permission, all interviews were audio-recorded. During the interviews, the researchers also observed participants’ facial expressions, tone, pauses, and body language, and recorded this nonverbal information in field notes. When ambiguities arose, clarification and probing were carried out promptly. Each interview lasted 30–40 minutes.

To reduce interviewer bias, the interviewers followed a unified interview guide and maintained reflexive notes throughout the data collection process. Neutral, non-leading language was used as far as possible, and premature interpretation during the interviews was avoided. After each interview, the researchers held a brief debriefing to review the interview process, identify possible subjective influence, and adjust the next.

Analyze Research Data

Interview data were analysed using Colaizzi’s seven-step method.15 Within 24 hours after each interview, the audio recordings and field notes were transcribed into written text. The analytic steps were as follows: (1) reading all interview materials repeatedly; (2) extracting significant statements; (3) coding recurrent meaningful statements; (4) clustering codes into categories and themes; (5) integrating and describing the findings in detail; (6) refining the thematic structure; and (7) returning the results to participants for verification. Two researchers independently coded the transcripts and then compared the coding results. Coding agreement was assessed using Cohen’s kappa, and the inter-coder consistency was 0.84, indicating good agreement. Discrepancies were resolved through discussion, and when necessary, consensus was reached through consultation with the broader research team. To reduce coding bias, coding was performed independently, analytic memos were retained throughout the process, and the theme generation process was repeatedly checked against the original transcripts and field notes.

Generate and Verify Journey Maps

This study uses a hybrid form of patient journey map for data visualization, including the patient’s disease stage, tasks, patient emotions, needs, pain points, and opportunity points, which can more comprehensively display the patient’s journey.16 The research team first integrated interview transcripts, observation records and medical data systems into the map framework, and then organized representatives of patients and family members to review the details of the journey and conduct thorough discussions. They also revised and improved the map content point by point based on the opinions of clinical experts to ensure that the map information is complete and consistent, and accurately fits the actual course experience of elderly esophageal cancer patients.

Quality Control

Several measures were adopted to ensure study rigour. First, maximum variation sampling was used to improve the breadth of perspectives. Second, pilot interviews were conducted to optimize the interview guide. Third, data collection and data analysis were conducted concurrently so that sampling could continue until information saturation was reached. Fourth, transcripts were returned to participants for member checking, and the generated journey map was reviewed by patient/family representatives and clinical experts. Fifth, dual independent coding, inter-coder consistency testing, team discussion, and repeated comparison with the raw data were used to enhance credibility and dependability. Finally, reflexive notes and field records were maintained throughout the study to help identify and control potential interviewer and analytic bias.17–19

Statistical Analysis

Descriptive statistics were used to summarize participants’ general characteristics. Categorical variables are presented as frequencies and percentages. The normality of continuous variables was examined using the Shapiro–Wilk test. Normally distributed variables are expressed as mean ± standard deviation, while non-normally distributed variables are presented as median (range). All descriptive analyses were conducted using SPSS version 26.0.

Result

A total of 15 elderly patients who underwent radical esophagectomy for esophageal cancer were interviewed. The total interview time was 8.8 hours, yielding 67,148 words of transcribed data. As shown in Table 1, participants were 61–76 years old (mean age 68.2 years), and most were male (12/15). Primary caregivers were mainly spouses (11/15), while 4 participants were mainly cared for by their children. The sample included both rural (8/15) and urban (7/15) residents. Most participants had a primary-school education or below (11/15), and the major medical payment type was the new rural cooperative medical scheme (9/15). Disease stages ranged from II to IV, with stage III being the most common (9/15).

Journey Mapping

The patient journey map was organized around three sequential stages: diagnosis, hospitalization/perioperative care, and home rehabilitation. Across these stages, four interrelated dimensions were identified: tasks, pain points, emotions, and needs. In total, 25 themes were extracted from the interview data (Table 2).

Table 2 Twenty-Five Themes Extracted from the Patient Journey Map

A conceptual framework was formed based on the time and experience themes of the patient journey map, and combined with esophageal cancer-related guidelines and clinical pathways, it was uniformly divided into three stages: diagnosis period, perioperative period, and home recovery period. Based on the four dimensions of text coding extraction tasks, core pain points, emotions, and needs, the multiple task challenges, emotional changes, and obstacles encountered by elderly esophageal cancer patients at each stage of their journey are restored, and the story lines of different dimensions of the patients at each stage are comprehensively drawn to form a journey map for elderly esophageal cancer patients. Specifically, the map is structured as a matrix: the horizontal axis represents the chronological progression through the diagnosis, perioperative, and home recovery stages, while the vertical axis details the corresponding tasks, core pain points, emotional trajectories, and unmet needs. This layout enables readers to independently trace how specific clinical tasks or challenges trigger distinct emotional responses and service needs at any given point in the care continuum. See Figure 1 for details.

Figure 1 Journey map of the entire cycle of radical surgical treatment for elderly patients with esophageal cancer.

Diagnostic Period Task: Symptom Identification and Clear Diagnosis

Patients with esophageal cancer often experience choking in swallowing in the early stages. They may have short-term or occasional difficulty swallowing when eating dry and hard food, which is sometimes relieved after drinking water. At the same time, they may be accompanied by chest pain, dry throat, abdominal distension and other discomforts. However, due to the limited cognitive level of patients, they are easily ignored in the early stages of the disease. At the same time, it is difficult for patients and their families to accept the diagnosis results in the early stage and do not believe that they have esophageal cancer.

N1:I felt a little uncomfortable in my throat at first, and then I felt it was a little difficult to swallow. I never thought it was this disease.

N5:I just felt dry mouth and couldn’t swallow food. My family didn’t take it seriously. They didn’t think it was a big problem. I never thought it was cancer.

Pain Points: Insufficient Awareness of the Disease and Ineffective Response Lack of Knowledge About Esophageal Cancer

Due to low levels of knowledge and education and poor use of the Internet, patients and their families lack a correct understanding of the symptoms related to esophageal cancer, and there is a delay in seeking medical treatment.

N3:At first I felt like there was something stuck in my throat. I always felt choked. I couldn’t eat a lot of food. Later I had a hard time drinking water. I couldn’t stand it anymore so I came to see it.

N6:I have some chest pain. I have seen a Chinese medicine doctor before and been treated for a period of time, but it has not relieved.

Symptom Response is Ineffective

Patients have insufficient nutritional intake due to dysphagia, pain, etc. Most patients already have weight loss and malnutrition when diagnosed, which directly affects the tolerance of subsequent treatment.

N1:I can’t eat when I’m at home. It’s hard to swallow and I don’t want to eat.

N10:I can only eat and drink water. My family always cooks for me alone. I feel very stressed and I don’t want to eat anymore.

Treatment Decision-Making Dilemma

Most patients find it difficult to undergo surgery or chemotherapy and expect conservative treatment. They hope that medical workers can provide more knowledge and information so that patients and their families can make correct decisions.

N9:If I can live a few more years with conservative treatment, I don’t want surgery.

N7:The doctor told me that surgery was necessary, and I did not know what other methods would have the consequences.

Emotions: Anxiety, Fear and Confusion Intertwined

Most patients have anxiety and are full of fear about cancer, surgery, chemotherapy, etc, worry about their future life, and fear of death.

N2:I looked up my disease from the Internet, and the reports were so scary. I feel like I won’t live for a few years. They said everything, and I didn’t know who to believe.

N5:I’m seventy-three this year. I’m afraid that I won’t be able to get out of the operating room. I’m afraid of getting older. I can’t even eat or sleep when I think about it.

Requirements: Fully Informed of Medical Information, Multidisciplinary Team Fully Inform Medical Information

Since effective disease information is unavailable, most patients hope that medical staff can systematically explain disease-related knowledge before making decisions, so that they can have a better understanding of the disease.

N1:I hope that every time the doctor can tell me what methods can be used to treat my disease. In addition to surgery, can conservative treatment include infusion and infusion? I want to hear more.

N3:I came to the outpatient clinic to see a doctor. I hope the doctor can give me more time to explain to me what my disease is, whether it is serious or not, and how I should treat it.

Relieve Early Symptoms

Before admission, the patient already had uncomfortable symptoms such as dysphagia, dry throat, and retrosternal pain. He was even malnourished, and his symptoms could not be relieved and he was deeply troubled by it.

N3:At first I felt like there was something stuck in my throat. I always felt choked. I couldn’t eat a lot of food. Later I had a hard time drinking water. I couldn’t stand it anymore so I came to see it.

N6:I have some chest pain. I have seen a Chinese medicine doctor before and been treated for a period of time, but it has not relieved.

Personalized Decision Support

Patients hope to have multidisciplinary consultations, provide individualized treatment options based on age and comorbidities, give patients and their families full explanations, and allow patients and their families to participate in decision-making.

N10:I have high blood pressure and diabetes. I don’t know if the surgery will have any other effects. I want a doctor who specializes in this to take a look.

N13:My heart was not very good before. Do I need treatment before surgery?

Periods of Hospitalization Task: Improve Postoperative Quality of Life Prevention and Treatment of Postoperative Complications

Patients after esophageal cancer surgery may suffer from complications such as hoarseness, anastomotic leakage, and pulmonary infection.

N6:After the operation, I followed the nurse’s instructions because I was afraid of not recovering well.

N12:I feel like I have phlegm, and I can’t cough it up no matter how much I cough. There’s a tube in my throat, and I can’t cough up any strength.

Early Functional Rehabilitation Exercise

Under the guidance of nursing staff, patients carry out early rehabilitation activities, respiratory function and swallowing function exercises.

N4:The nurse asked me to move more on the second day after the operation. I didn’t move much. I could only walk around the ward. She said that if you practice slowly, you can recover faster.

N7:There are videos of respiratory function exercises in the hospital. I will watch them when I am fine. My family members will also urge me to practice more.

Preparation for Discharge

In the later stages of hospitalization, patients and their families need to learn home care skills, nutritional knowledge, etc. in advance, such as tube feeding operations, diet preparation, and understand follow-up plans.

N10:When I am about to be discharged from the hospital, the nurse will tell my family how to put nutrient solution into the tube I am wearing, and teach us what to do to prevent the tube from being blocked. After we are discharged from the hospital, we are alone, and we feel unsure.

N15:The medical staff taught us how to exercise and how to monitor our weight after we return. We wrote it all down and gave us a booklet. We forgot that we can read it. The doctor told us the review time, and the gastric tube can be removed by then.

Pain Points: Severe Physical Symptoms, Lifestyle Changes Severe Physical Symptoms After Surgery

Postoperative patients often face physical symptoms such as dysphagia, abdominal distension, pain, and discomfort caused by various types of drainage tubes, which affect patients’ daily life.

N7:Before the operation, I did not expect it to be so uncomfortable after the operation. After I woke up, there were many tubes on my body, and I did not dare to move them for fear that something would go wrong. It would hurt after moving for a while. The tubes in the front of my neck made me very uncomfortable, and I could not sleep well.

Difficulty Adapting to Changes in Dietary Patterns

Patients need to prevent anastomotic leakage after surgery, so they need to suspend oral feeding and insert a duodenal or jejunal feeding tube from the nasal cavity. Feeding intolerance such as constipation, abdominal distension, reflux, etc. often occurs.

N6:I used to have three meals a day, but now I have to take nutritional supplements 5 or 6 times a day. I don’t dare to take any more supplements later in the evening.

N12:I miss the days when I could eat in my mouth. My mouth is dry and bitter every day. I am very depressed.

Emotions: Negative Emotions Aggravate

Patients after esophageal cancer surgery often face a variety of physical symptoms and require family care, which comes with family financial and care burdens. Patients are prone to negative emotions such as anxiety, depression, worry and even self-blame.

N6:Although I have completed the operation, I am still scared. I am afraid of being transferred to other positions.

N8:The surgery has cost the family a lot of money, and the treatment and nutritional supplements are all expenses. I have burdened them.

N14:The director told me that the surgery was successful, but I am still very unhappy. Why did I get this disease? I will have to be hospitalized for chemotherapy later. I feel that life is meaningless.

Need: Effective Postoperative Symptom Management and Personalized Health Guidance Effective Postoperative Symptom Management

Elderly patients after surgery for esophageal cancer often do not know how to deal with uncomfortable symptoms such as pain and reflux, and their caregivers lack relevant knowledge and are unable to provide help. Therefore, patients and their caregivers hope to receive guidance and advice on disease symptom management.

N1:After taking the nutrient solution, I always have diarrhea. I have diarrhea four times in one night. I still have diarrhea after adjusting the amount. What should I do?

N4:My mouth is so dry that the skin is peeling. I only dare to rinse my mouth. I dare not swallow the saliva. I still feel heartburn when I go home at night.

Personalized Health Guidance

Postoperative rehabilitation exercise is the key to restoring body function. However, elderly patients with esophageal cancer have different physiques and may have different types of comorbidities. General routine rehabilitation exercises cannot meet their individual needs.

N1:I have high blood pressure. After a few laps of walking, my blood pressure is high and I feel dizzy. Is there any other way to exercise?

Elderly patients have low multicultural levels, and professional and terminological health education cannot meet their needs.

N2:I can’t understand what the nurse said before because I’m too old and I can’t learn it myself. I want to tell it in an easy to understand way.

Home Recovery Period Task: Improve Long-Term Quality of Life Long-Term Symptom Management

Esophageal cancer surgery causes digestive tract reconstruction, and patients’ eating behaviors change after surgery. Patients and their caregivers need to improve their nutritional literacy and master nutrition and diet-related knowledge to facilitate the recovery of body functions. At the same time, patients need to learn to identify uncomfortable symptoms and try to self-manage symptoms.

N7:The doctor told me that after going home, I need to pay more attention to nutrition. I can have formula milk and chicken soup, and I’ve taken note of all that.

N11:After the feeding tube was removed, eating isn’t the same as before. I need food that I can swallow and that is also nutritious.

N7:The nurse taught me how to prevent reflux after eating at home and showed me how to adjust my food intake if I feel bloated.

N14:I already know that the symptoms I have after the surgery are normal reactions, so I don’t feel scared. Now, when I have these symptoms, I can handle them myself.

Management of Comorbidities

Elderly patients with esophageal cancer often have comorbidities with other chronic diseases such as hypertension and diabetes. They need to coordinate various diseases in daily life, medication, rehabilitation exercises, etc.

N8:Besides this, I have many other diseases, my blood pressure is also high, I take several kinds of medicine, I am even weaker after the operation, and I feel uncomfortable in many places.

N13:I have to visit several outpatient clinics during my review, and I have to seek consultation when I am hospitalized, which is very troublesome.

Return to Social Roles

As the body recovers after surgery, patients need to gradually return to their original social life and break away from the role of patient.

N15:I don’t want to stay at home all the time. I want to go out to work and reduce the burden on my family.

Pain Points: Physical Symptoms Last for a Long Time and Home Care Lacks Personalization Physical Symptoms Last for a Long Time

Patients with esophageal cancer may still experience a variety of physical symptoms several months after discharge, with dysphagia, fatigue, pain, reflux, and sleep disorders being the most common.

N4:Every time I take the nutrient solution, I feel bloated. After a while, I still feel reflux and heartburn when I lie down.

N7:After the operation, I still find it difficult to swallow, and swallowing saliva feels awkward. How can I relieve it?

N11:I feel very tired every day, can’t cheer up, have heartburn at night, and can’t sleep well.

Lack of Personalized Family Care Plan

After discharge, patients and their families need to complete daily care and rehabilitation exercises at home, and most of them cannot make good use of discharge instructions. In addition, universal health education may not meet the special needs of elderly patients with comorbidities.

N7:I have diabetes. I don’t know how much nutritional solution I should take every day. Is there anything suitable for diabetic patients?

N13:Before the operation, I was very strong and moved regularly. I don’t know how much daily activity I need to reach the standard.

Emotions: Obvious Shame, Helplessness, Low Self-Esteem Severe Stigma

Image changes caused by surgical incisions and chemotherapy, such as weight loss, hair loss, scars, etc, often cause patients to feel shameful, develop low self-esteem and avoidance, reduce social activities, and affect the return to social roles.

N3:My voice became hoarse after the operation, my voice sounded strange, and I was afraid of communicating with others.

N7:I don’t want to go out because I’m afraid that the neighbors will see me like this.

N11:I also have a surgical incision on my neck. I’m afraid that others will stare at me. How can I accept it as soon as possible.

Helpless and Confused

Most elderly patients live in rural areas, lack medical resources, and are not good at Internet access. It is difficult to obtain medical help through online consultation, telemedicine and other methods, and they often feel helpless, confused and other emotions.

N6:I felt helpless after being discharged from the hospital. My home is far from the hospital. If I feel uncomfortable and anxious, I can only go to a nearby clinic for a quick checkup.

N11:It is better to feel at ease in the hospital after returning home. When I encounter problems, I can’t find anyone to solve them. I’m not very good at using a smartphone.

Needs: Long-Term and Continuous Out-of-Hospital Guidance, Convenient Medical Consultation Long-Term and Continuous Out-of-Hospital Guidance

Most patients have limited access to nutritional information, making it difficult to ensure the nutrition their bodies need, which in turn affects their recovery.

N7:I wanted to squeeze some vegetable juice for him, but I was told that it was not nutritious and would easily clog the pipes. I didn’t know how to cook it.

N14:I did not know what nutritious food to give him besides nutrient solution. I just kept going back and forth because I was afraid that his body would lack nutrients.

Convenient Medical Consultation

After patients are discharged from hospital, they often face problems in diet, rehabilitation, etc. The convenient medical consultation method makes it easier for them to solve problems anytime and anywhere.

N2:I have joined a WeChat group for post-operative follow-up. There are several medical staff in it. If I encounter something I do not know, I can just ask in the group. Someone will tell me, so I do not have to go to the city, which saves me a lot of trouble.

N5:I don’t know how to use WeChat. I can only call and ask if I have something, and I can’t watch videos. I can only ask my son to teach me.

N13:I hope to establish a group of patients. When I have questions, I can ask each other. When I see someone who is like me, I feel less lonely.

Opportunity Points

To address the unmet needs identified across the care continuum, actionable opportunity points were extracted, as illustrated in the journey map (Figure 1). The need for comprehensive medical information and personalized decision support translates into the opportunity for “Multidisciplinary collaboration”. The requirement for effective postoperative symptom management and individualized health guidance highlights the need for “Dynamic Assessment” and a “Precise Education System: Personalized and Elderly-Friendly”. Furthermore, the demand for long-term out-of-hospital guidance and convenient consultation is addressed by the opportunity to establish an “Outpatient Rehabilitation Guidance Platform”. Together, these elements form the foundation for “A comprehensive, phased intervention system” designed to optimize full-cycle care for elderly patients.

Discussion The Visual Presentation of the Whole-Process Management of Elderly Esophageal Cancer Patients Can Provide Reference for Medical Staff to Analyze Their Rehabilitation Needs

This study uses the three stages of patient consultation, hospitalization, and home rehabilitation as the timeline. Interviews analyze the tasks, pain points, emotions, and needs of elderly esophageal cancer patients at each stage, and use a journey map to present the problems encountered by the patients throughout the disease process. The interview results of Liu Huihui et al20 condensed four themes: physical symptom distress, negative emotional distress, unmet expectations and needs, and efforts to adapt to a new life, which are consistent with this study, but only show the patient needs in the postoperative period. Lu Yang et al3,4 used the ecological instantaneous assessment method to capture the dynamic changing trends and interactions of core postoperative symptoms in patients with esophageal cancer. Although it reflects the dynamic changes in patient needs, it cannot be combined with patient tasks, emotions, etc. Journey map research can not only present the needs of esophageal cancer patients at a certain stage, but also connect changes and needs at different stages, analyze task changes, mood swings, pain points, etc. throughout the disease cycle, and identify opportunities for improvement in the medical service process.21 This interpretation is consistent with recent international research on PJM in oncology. A 2025 scoping review of breast cancer care found that PJM is particularly useful for identifying key touchpoints such as diagnosis, treatment decision-making, and follow-up, and for revealing delays, coordination gaps, and opportunities for service redesign; however, current applications remain fragmented, largely hospital-focused, and weakly integrated across settings and families.22 Kwon et al developed journey maps for older adults receiving cancer treatment and showed that mapping changes in well-being across the cancer journey could enrich patient-clinician communication and help contextualize scores or symptoms that might otherwise be interpreted in isolation.23 More recently, Day et al mapped breast and cervical cancer journeys across the cancer care continuum and demonstrated that patient journey mapping can expose intersecting vulnerabilities, barriers to access, and system-level shortcomings that are not easily captured by routine service evaluation.24 These findings support the value of PJM as not only a descriptive tool, but also an analytic framework for identifying where care transitions fail to meet patients’ actual needs.

Physical Symptoms and Negative Emotions Cover the Entire Journey, and Post-Operative Lifestyle Reconstruction Cannot Be Ignored

The journey map shows that physical discomfort symptoms and negative emotions run through the entire course of elderly patients with esophageal cancer and show a dynamic evolution trend. In particular, lifestyle changes after digestive tract reconstruction have a significant impact on the patients’ physical and mental status. This is consistent with the conclusions of previous studies:3 the trajectory of core symptoms in patients with esophageal cancer after surgery is dynamic and diverse, and there are varying degrees of interaction between symptoms at different time points. Based on the journey map, it is evident that patients have significantly different needs for symptom management and emotional support at various stages of their illness: During the diagnostic phase, patients’ core needs focus on receiving comprehensive medical information, including treatment options, potential risks, and prognosis, in order to alleviate the confusion and fear brought by uncertainty. The 2023 ASCO guideline update recommends that older adults with cancer receive geriatric assessment-guided management and explicitly highlights physical and cognitive function, emotional health, comorbidities, polypharmacy, nutrition, and social support as core domains that should shape care planning.25

In the perioperative period, the need shifts toward personalized and easy-to-understand rehabilitation guidance, covering practical matters such as dietary adjustments, comorbidity management, and feeding tube care skills. During home rehabilitation, patients have a more urgent need for convenient and efficient medical support channels to address sudden issues such as alleviating adverse reactions and adapting to postoperative life. In summary, this study recommends building a full-cycle, stage-based intervention system, establishing a continuous symptom management and psychological support mechanism, and dynamically evaluating patients’ symptom burden and emotional status at different stages to provide targeted interventions. A 2025 study on compassionate cancer care for older adults further showed that fragmented services, insufficient interdisciplinary teamwork, and limited person-centred organization remain major barriers to delivering care that matches older adults’ health status, expectations, and life choices.26

It is advised to form a multidisciplinary team including oncologists, nurses, rehabilitation therapists, nutritionists, and chronic disease management experts,24 to strengthen interdisciplinary collaboration in comorbidity management and meet the complex health needs of elderly patients with esophageal cancer. Additionally, an out-of-hospital rehabilitation guidance platform should be established, offering timely medical advice and practical guidance to home-based patients through regular telephone follow-ups and age-appropriate WeChat group chats, among other approaches, to fill the gap in out-of-hospital care and comprehensively enhance the quality of whole-course management.

Health Education Faces Challenges of Adapting to Aging and Personalization

This study found through patient journey maps that the health education needs of elderly patients with esophageal cancer run through the entire stages of diagnosis, perioperative period, and home rehabilitation, and because existing health education cannot meet patients’ needs, patients still have many unmet needs after discharge, affecting their quality of life. Elderly patients often have problems such as hearing loss, memory loss27 and low digital literacy.28 Traditional oral education lacks popular expressions that adapt to the cognition of the elderly, and the efficiency of information transmission is low; while online education channels are difficult to cover groups who are unfamiliar with smart devices. Previous studies29 have shown that diversified promotional media are more likely to win the favor of elderly patients, and the educational content needs to be strengthened in a timely manner to ensure effective reception. In addition, elderly patients often have basic diseases such as hypertension and diabetes, and there are significant individual differences in physical condition and treatment tolerance. The standardized educational content does not match the actual needs of patients, making it difficult to effectively guide practice. Therefore, this study recommends building a precise missionary system. Make educational formats more suitable for the elderly,30 diversify publicity media, and develop a variety of materials such as illustrated manuals and practical micro-videos.31 A 2024 systematic review of patient navigation in cancer treatment found benefits in treatment initiation, adherence, patient satisfaction, and quality-of-care indicators, with particularly positive effects in disadvantaged populations.32 Combine these with bedside demonstrations and family-assisted teaching,33 while also retaining traditional methods such as telephone consultations and home visits. Strengthen the personalization of educational content34 by tailoring guidance plans based on patients’ comorbidities and physical conditions and providing individualized consultations. Implement phased and dynamic education:35 focus on disease and treatment interpretation during the diagnostic period, on practical rehabilitation during the perioperative period, and on coping with adverse reactions during the home care period. Meet the needs of the disease course through multidisciplinary collaboration.

This study was conducted in a single center with a relatively small purposive sample that was predominantly male, rural, and had a lower educational level, which may limit the transferability of the findings to broader populations. Therefore, our findings should be interpreted as hypothesis-generating for similar demographic settings rather than universal generalizations. In addition, the results were based primarily on retrospective patient reports, which inherently introduces the potential for recall bias, as patients’ recollections of earlier stages such as diagnosis may be influenced by their subsequent treatment experiences and current rehabilitation status. Furthermore, the study did not include the perspectives of caregivers or healthcare professionals. Furthermore, although this study maps the “full-course” management, its scope is primarily limited to the diagnosis, perioperative, and home rehabilitation stages. Important phases such as the extended pre-diagnostic symptom trajectory and end-of-life or palliative care transitions were not fully captured, which remains a limitation to be addressed in future comprehensive studies. Moreover, the current analysis aggregates patients across different disease stages (Stage II–IV) and treatment modalities into a single group to identify overarching themes. Due to the small sample size, we were unable to stratify the journey map by disease stage or specific adjuvant treatment regimens, which likely flattens important variations in patient experiences—particularly the differing physical and psychological burdens between early-stage surgical patients and advanced-stage patients receiving combined therapies. Future studies with larger cohorts should conduct stage-stratified analyses to explore these nuanced differences.

Summary

By drawing a journey map, this study explores the tasks, core pain points, emotions, and needs of elderly patients with esophageal cancer throughout the entire disease management process, which will help medical staff clearly understand the patient’s disease process, disease problems, and obstacles, and facilitate the development of targeted nursing strategies. The research subjects of this study only came from one hospital at the time of data collection and represent a specific demographic with generally lower health literacy, which cannot accurately reflect the full picture of symptoms of esophageal cancer patients in different regions and different levels of medical institutions. In the future, multi-center studies can be carried out in different levels of medical institutions to further improve the research results. Furthermore, future interventional studies should explicitly evaluate how these targeted, age-appropriate care strategies improve specific postoperative rehabilitation outcomes, thereby strengthening the clinical applicability of the current findings.

Artificial Intelligence (AI)

The authors did not use generative AI or AI-assisted technologies in the development of this manuscript.

Data Sharing Statement

All data generated or analysed during this study are included in this article. Further enquiries can be directed to the corresponding author.

Ethics Approval and Consent to Participate

This study was conducted in accordance with the Declaration of Helsinki and approved by the ethics committee of Hebei General Hospital (Ethical review number: (2025) Scientific Research Ethics No. (564)). Written informed consent was obtained from all participants.

Funding

2026 Government-funded Project for the Cultivation of Outstanding Clinical Medical Talents (ZF2026039). Project Title: Construction and Empirical Research on the Whole Process Management Model for Elderly Esophageal Cancer Surgery Patients Based on the Patient Journey Map.

Disclosure

All of the authors had no any personal, financial, commercial, or academic conflicts of interest separately.

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