Exploring the response shift effects on patient-reported outcomes among postoperative bladder cancer patients: a qualitative study in China

Abstract

Background

Bladder cancer significantly impacts patients’ quality of life, making patient-reported outcomes (PROs) a crucial component of clinical evaluation and care. However, patients’ internal standards, values, or conceptualizations may change over time due to diagnosis or treatment experiences—a phenomenon known as response shift —which can threaten the validity of longitudinal PRO assessments and remains underexplored in this population. This study aims to explore response shift in the evaluation of PROs among bladder cancer patients and to identify its underlying mechanisms, using a phenomenological qualitative design.

Methods

Semi-structured interviews were conducted between December 2023 and October 2024 in the urological wards of a tertiary-level hospital in China. Purposive sampling was used to recruit 14 patients with bladder cancer. Colaizzi’s phenomenological analysis method was used to analyze the data.

Results

Three themes were identified as relevant to response shift effects on PROs of bladder cancer patients: multidimensional preoperative and postoperative stressors as triggering antecedents of response shift; cognitive adjustment strategies constituting response shift mechanisms; two divergent adaptive outcomes after exposure to bladder cancer stress.

Conclusions

Response shift was observed in PROs three months after surgery for bladder cancer. Understanding the mechanisms behind response shift can help healthcare professionals interpret patient feedback more accurately and optimize personalized care strategies.

Supplementary Information

The online version contains supplementary material available at https://doi.org/10.1186/s12894-026-02247-6.

Introduction

Bladder cancer is a common malignant tumor of the urinary system [1], with an estimated 614,000 new cases and 220,000 deaths worldwide in 2022. Among men, it is the sixth most common cancer and the ninth leading cause of cancer death [2]. It is also a great disease burden in China, with approximately 92,900 new cases and 41,400 deaths reported in 2022 [3]. The risk of developing bladder cancer increases with age, particularly after age 50, and is approximately 3–4 times higher in men than in women [4]. Given the current trends in ageing, bladder cancer has become a significant health issue that cannot be ignored.

Bladder cancer is most commonly urothelial carcinoma, accounting for about 90% of all cases [5]. Of newly diagnosed bladder cancer cases, approximately 70%-80% will present with non-muscle-invasive disease (Ta, T1, and Tis), and despite adequate treatments, 40% will recur, and 20% will progress to muscle-invasive disease (≥ T2 disease) [6, 7]. In the early stages of bladder cancer, it often manifests as painless hematuria or irritative voiding symptoms, such as frequency or dysuria; a few patients may also experience accompanying symptoms, such as low back pain and painful urination, which can be easily overlooked and may result in delayed medical care [8]. Bladder cancer’s treatment recommendations must be formulated according to stage, pathology, and patient status. Common treatment options include surgically assisted intravesical treatment and radical cystectomy (RC) [7].

Transurethral resection of the bladder tumor (TURBT) is recommended as the primary treatment for non-muscle-invasive bladder cancer (NMIBC) [7]. However, several studies [9, 10] have indicated that there remains a risk of tumor remnants and spreading after TURBT alone. This suggests a need for adjuvant intravesical chemotherapy, which may negatively impact health-related quality of life (HRQOL). RC is currently the recommended treatment for high-risk NMIBC and muscle-invasive non-metastatic bladder cancer. However, patients who undergo this procedure must use a urostomy bag for the rest of their lives [1]. Furthermore, patients may face various challenges after RC, including changes in body image, urinary diversion, lifestyle adjustments, and financial burdens. These challenges can lead to significant distress and negatively affect patients’ mental health, resulting in psychological distress [11, 12].

To sum up, it is no surprise that bladder cancer patients (regardless of whether they undergo TURBT or RC) often encounter multiple challenges after discharge, necessitating continuity of care. However, healthcare professionals typically focus only on predictable treatment-related symptoms and may overlook less severe yet equally impactful symptoms in patients. One study found discordance in patients’ and physicians’ reporting of symptoms in patients with advanced metastatic bladder cancer. Physicians reported fewer symptoms and rated the severity lower than those of patients [13]. Consequently, healthcare professionals need to acknowledge and understand symptomatic issues from the patients’ perspective. Patient-reported measures cover two categories: patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). These standardized tools capture patients’ reported perspectives, including physical symptoms, daily functioning, emotional and spiritual suffering, and perceptions of clinical communication, interpersonal respect, shared decision-making, and integrated care coordination [14, 15]. Although PROMs and PREMs are frequently used interchangeably in clinical publications, the two instruments differ substantially in their core measurement content, theoretical underpinnings, and practical implications for clinical care. Patient-reported outcomes (PROs) provide scientifically rigorous, systematic methods for identifying key factors that influence patients’ health status and prognosis.

PROs are reports from patients, without interpretation by physicians or others, about how they function or feel regarding a health condition and its therapy [16], aligning with the current “patient-centered” concept. However, an important issue in current applications of PROs is the phenomenon known as response shift (RS). This refers to the changes in patients’ health evaluations, which can affect the accurate assessment of their HRQOL. RS indicates that patients’ perceptions of their HRQOL can be dynamic, frequently changing over time and under different circumstances. This shift can result from recalibration, changes in values, and reconceptualization [17]. Consequently, these changes may not reflect the actual progression of the disease; rather, they represent the subjective responses of the patient as they adjust their QOL criteria. This adjustment may influence healthcare professionals’ understanding of the treatment’s effectiveness and the patient’s recovery status, thereby complicating the interpretation of PROs [18].

RS has been studied with various diseases and conditions, including hypertension [19], multiple sclerosis [20], and cancer [21, 22]. The theoretical model of RS suggests that patients’ adaptation to disease is often influenced by their coping styles, social comparisons, social support, and other factors. However, there is a lack of research exploring the mechanisms of RS in the context of bladder cancer. This insufficient evidence makes it difficult to understand the factors contributing to RS’s prominent role in these patients. Moreover, most existing studies have relied on a single method to measure RS, and the quantitative latent-variable models used do not effectively explain the specific pathways underlying these mechanisms. Qualitative methods, on the other hand, can provide deeper insights into mechanisms such as goal reordering, reframing expectations, spiritual practices, and individual nuances that quantitative studies may overlook. This approach can thus enhance the understanding gained from quantitative assessments [23]. Therefore, this study aims to explore the diverse and complex mechanisms underlying RS in patients following bladder cancer treatment through qualitative research. The findings of this research will serve as a foundation for identifying and managing RS in bladder cancer patients, while also providing valuable support for future clinical research, treatment planning, and the optimization of nursing care decisions for this population.

Methods

Study design

The descriptive phenomenological study was selected as the qualitative methodology to explore the RS phenomenon in postoperative PROs for bladder cancer patients within the Chinese context. Phenomenology focuses on individuals’ subjective perceptions of their experiences, emphasizing the reduction of phenomena to understand how people assign meaning to experiences within specific contexts. This approach acknowledges that perceptions will differ based on the individual and their context [24]. Given that RS pertains to changes in patients’ evaluation of QOL due to shifts in health status, phenomenology serves as an appropriate methodological framework for understanding how patients adapt to and interpret these changes after treatment. We adopted the Consolidated Criteria for Reporting Qualitative Research (COREQ) as a guiding framework throughout the research process to ensure methodological rigor and scientific quality of this qualitative work [25], as detailed in Appendix A.

Theoretical model

Sprangers and Schwartz proposed a theoretical model of RS comprising five interrelated components: catalyst, antecedents, mechanisms, RS, and perceived QOL. Catalysts include the patient’s health status, changes in health status, and other health-related therapeutic interventions or events believed to impact QOL. Antecedents refer to demographic, cultural, and environmental characteristics that can influence a patient’s experience. Mechanisms encompass the behavioral, cognitive, and affective processes that adapt to changes in the catalyst (e.g., initiating social comparisons, reordering goals, etc.). RS refers to changes in the internal standards, values, and conceptualizations [17]. The model suggests a dynamic feedback loop that explains how patients maintain stability in their QOL ratings despite changes in their health status, as illustrated in Fig. 1. Building on this model, our study aims to explore the occurrence and mechanisms of RS in bladder cancer patients three months post-treatment—a clinically significant period for both NMIBC and muscle-invasive bladder cancer (MIBC) patients [26, 27]—with treatment serving as the catalyst, socio-demographic data as antecedents, and PROs as indicators of perceived QOL.

Fig. 1.

A theoretical model of response shift and QOL

Study setting and recruitment

The study was conducted in the urology department of a tertiary hospital, enrolling bladder cancer survivors at the unified three-month postoperative follow-up time point. With assistance from clinical urology staff, stratified purposive maximum variation sampling was implemented during routine follow-up consultations to recruit eligible participants. Stratification dimensions for diverse case selection included surgical modality (TURBT or RC), pathological disease stage, gender, age, educational background, and household economic status. A detailed study information sheet was provided to potential interviewees prior to recruitment to clarify research aims, procedures, and privacy safeguards. Written informed consent was collected before each interview. All one-on-one interviews took place in a quiet, private consultation room to encourage unrestricted, honest self-disclosure.

Inclusion and exclusion criteria

The inclusion criteria for participants were as follows: (a) aged ≥ 18 years; (b) histopathologically diagnosed bladder cancer and had undergone surgery (including TURBT or RC); (c) reading and communicating competent to participate in the interview, assessed by the doctors or nurses; and (d) informed consent to participate in this study voluntarily. Exclusion criteria were as follows: (a) having a serious psychological or psychiatric illness; and (b) having cognitive impairment or altered consciousness, who cannot comprehend the research. Sample size was determined based on information saturation [28]. We followed the N + 2 saturation rule from Saunders et al. [29], which defines saturation as the recruitment cut-off where two consecutive newly enrolled participants produce no emerging novel themes during thematic analysis.

Data collection

Interviews were conducted by three Master of Science in Nursing student researchers (Zhong, Zhang, and Chang), all of whom completed standardized training in qualitative interviewing and bladder cancer nursing prior to fieldwork. The training covered core qualitative methodologies, RS theoretical background, patient communication skills, standardized prompting techniques, and bias control; training assessment was passed before formal data collection to guarantee interview quality. A postgraduate student in urological nursing served as the primary interviewer (Zhong). She accumulated more than one year of frontline clinical nursing experience caring for postoperative bladder cancer patients receiving TURBT or RC, which enabled her to gain direct, in-depth contact with this specific patient group and formed her preunderstanding of participants’ physical and psychological struggles. Regarding positionality and researcher reflexivity: the primary interviewer worked as a ward nurse for bladder cancer patients before this study. Her clinical experience brought prior assumptions that postoperative physical distress inevitably triggers negative psychological states and simple coping behaviors, and she initially expected obvious RS value rearrangement among patients with ostomy. To mitigate bias introduced by prior clinical experience, she kept detailed reflective journals throughout data collection to record personal pre-judgments, emotional reactions, and unexpected participant narratives after each interview. Weekly peer debriefings were conducted among all three student researchers during data collection and analysis to challenge individual subjective preconceptions and reduce interpretative bias. Based on a literature review and the RS theoretical model, the research team developed an initial interview outline and conducted 5 pilot interviews with patients with postoperative bladder cancer. These 5 pilot interviews were used only to revise the interview guide and were excluded from the final thematic analysis to avoid confounding the formal research data. Revisions were made based on participants’ difficulty understanding certain questions—for example, “Have you recently reordered your goals?” was clarified as “What are your life goals now, and have they changed from before?” The finalized outline (Table 1) was then used for formal data collection. Interviews followed the guide with flexibility for follow-up questions. Structured and spontaneous probing probes were applied uniformly during all formal interviews: when participants gave vague, superficial answers about illness feelings, life changes or inner thoughts, interviewers adopted neutral exploratory probes such as “Could you talk more about that feeling?” “What made you have such a thought?” to dig deep into underlying cognitive changes related to recalibration, reprioritization and reconceptualization. Probing was avoided to induce directional responses that would bias participants’ authentic narratives. Interviews lasted 30 ~ 60 min, with an average interview duration of 44 min, and were audio-recorded with participants’ consent. All interviewers held nursing backgrounds but were not assigned to provide routine ward care for any of the recruited participants in this study; there was no prior long-term nurse–patient care relationship between interviewers and interviewees before each interview. This equal, unfamiliar interviewer–participant relationship helped patients express sensitive shame, pain and inner true thoughts without reservation. All audio recordings were transcribed verbatim, yielding a total data corpus of 126 pages of transcripts for subsequent analysis. All three student researchers remained neutral while observing nonverbal behaviors and adjusting their strategies in real-time. Interviews were paused if participants experienced discomfort, and data collection ceased once two consecutive interviews yielded no new themes, indicating theoretical saturation.

Table 1.

Semi-structured interview outlines

Mechanisms	Interview questions
Coping	How has treatment for bladder cancer affected you? How did you cope with these effects?
Social support	Did you seek help from outside sources (family, relatives, friends, coworkers, welfare foundations, medical care) during your treatment? What helped you the most?
Social comparison	Did you perceive yourself as different from the healthy people around you or the patients in the same ward during the treatment period? Have you changed in any way in comparison?
Goal reordering	What are your goals in life now, and have they changed from before?
Reframing expectations	What are your expectations for the future, and have they changed from before?
Spiritual practice	Do you have any religious beliefs? Did you draw on your spiritual beliefs during treatment, and if so, what kind of support did you receive?

Data analysis

A total of three researchers participated in the whole research procedure. Two researchers (Zhong and Zhang) independently performed thematic analysis of all interview transcripts to reduce subjective bias, and a senior professor with rich qualitative research experience mediated coding disagreements and ensured consensus (Lv). Data analysis was primarily guided by the a priori theoretical framework of RS theory. A hybrid deductive–inductive coding strategy was adopted: deductive coding was anchored in three RS types (recalibration, reprioritization, reconceptualization) to systematically categorize changes in patients’ cognitive adaptation, while supplementary line-by-line inductive open coding was applied to capture unanticipated experiential details, ensuring the analysis was both theoretically grounded and data-driven. This study strictly implemented Colaizzi’s seven-step phenomenological method, with the entire thematic development process structured around RS. First, all transcripts were reread to develop a holistic understanding of participants’ postoperative experiences. Second, independent and semantically complete statements were extracted and defined as meaningful nodes. Third, initial codes were generated for each meaningful node. Fourth, similar codes were aggregated to form preliminary thematic clusters. Fifth, overlapping and redundant clusters were refined and merged to form secondary subthemes. Sixth, subthemes were further categorized into hierarchical primary themes. Seventh, member checking was conducted with several participants to verify the authenticity and accuracy of the final themes. All coding discrepancies were resolved through group discussion and senior supervision to achieve full consensus. NVivo software was used for standardized data management and systematic thematic extraction. A complete audit trail, including original audio recordings, verbatim transcripts, coding archives, consensus discussion records, and member-checking feedback, was retained throughout the analysis to ensure methodological transparency and replicability.

Ethical considerations

The study was approved by the Clinical Research Ethics Committee and conducted in line with the Declaration of Helsinki. Participation was voluntary, and informed consent was obtained after a clear explanation of the study’s purpose and procedures. Data confidentiality was strictly maintained, and participants could withdraw at any time without risk or cost.

Results

Participants

The interviews were concluded once information saturation was achieved. A total of 14 bladder cancer patients participated, with a mean age of 60.57 ± 12.07 years. Among the participants, 71% were male, three reported having religious beliefs, while eleven did not. The treatment modalities included RC (n = 2), neoadjuvant chemotherapy (NAC) (n = 2), and TURBT (n = 10). The characteristics of the participants are detailed in Table 2.

Table 2.

Characteristics of participants (N = 14)

Participant	Age	Sex	Occupation	Religion	Surgical treatment	Comorbidities
A	65	M	Retired	No	TURBT	No
B	76	M	Retired	Christianity	NAC	2
C	64	F	Retired	Christianity	NAC	3
D	74	F	Retired	Buddhism	TURBT	No
E	75	M	Agriculture	No	RC+Ileal conduit	1
F	55	M	Agriculture	No	TURBT	2
G	60	F	Working	No	TURBT	1
H	46	M	Working	No	TURBT	No
I	37	M	Working	No	TURBT	1
J	42	M	Working	No	TURBT	No
K	65	M	Retired	No	TURBT	8
L	57	M	Working	No	RC+Ileal conduit	1
M	65	M	Retired	No	TURBT	4
N	67	F	Retired	No	TURBT	2

F Female, M Male, NAC Neoadjuvant chemotherapy, TURBT Transurethral resection of bladder tumor, RC Radical cystectomy

The in-depth interviews with cancer patients resulted in transcripts containing 170 valid semantic units related to postoperative stress, psychological adaptation, and cognitive adjustment. Qualitative data analysis generated three primary themes and eleven secondary themes that collectively reflect postoperative bladder cancer patients’ multidimensional illness experiences, dynamic psychological adaptations, and diverse coping trajectories. Notably, this study explores the mechanism underlying RS across three types: recalibration, reprioritization, and reconceptualization. Theme 1 represents the negative stress background that triggers RS, Theme 2 embodies the mechanism that generates distinct RS, and Theme 3 presents the differentiated final outcomes of RS. To visualize the alignment between extracted thematic findings and the RS model, we mapped all themes to the RS model (Fig. 2).

Fig. 2.

Mapping of study themes onto the response shift model

Theme 1: multidimensional preoperative and postoperative stressors as triggering antecedents of RS

This theme reflects patients’ preoperative and postoperative physical, psychological, and social stress and negative adaptation status, which serve as the antecedents that trigger RS. Bladder cancer patients experience multidimensional suffering, which includes urinary difficulties and physical weakness, both before and after intravesical chemotherapy and surgical treatments. Psychologically, they grapple with fears of disease recurrence, anxiety about death, and feelings of guilt towards their families due to financial burdens. The physical and psychological symptoms are intertwined, creating a vicious cycle. Socially, patients often self-isolate because of their physical weakness and feelings of stigma. Despite their need for support, certain personality traits may contribute to further isolation, which increases their physical and mental burdens.

Sub theme 1: physiological adverse reactions and functional impairment after treatment

The patient experienced the physical pain caused by bladder cancer: recurrent urinary frequency and urgency, discomfort from intravesical chemotherapy, weakness after chemotherapy, and extreme fatigue after surgery. Additionally, the skin issues resulting from wearing an ostomy bag and the pain in the urethra caused by intravesical treatment contributed to a considerable level of physiological distress.

Context of illness experience

All quotations below reflect objective physical side effects and bodily impairment induced by bladder cancer surgery and adjuvant intravesical chemotherapy.

Patient A: ‘This intravesical treatment pokes the urethra to rot, and the impact is too great, because the urethra, this disease has been me too much impact. I can’t sleep during the day and night.’

Patient C: ‘After the relapse, there would be frequent and painful urination again, and I would have to run to the toilet several times a day, almost every day, each time with a noticeable stinging sensation.’

Patient E: ‘Chemotherapy is also painful as hell. After that medicine, I can’t eat, and I have no energy.’

Patient F: ‘I feel particularly fatigued after the operation and often have little energy for the whole day.’

Sub theme 2: disease-related anxiety and family-oriented self-blame

Psychologically, patients faced profound anxiety and self-blame. While worrying about relapse and fearing death, patients also feel guilty about financial pressure and the burden they place on their families. The intertwined expectations and sense of responsibility towards their loved ones and themselves intensify their psychological distress. Anxiety not only affects sleep but also triggers somatic symptoms, creating both physical and mental anguish.

Context of illness experience

These narratives capture patients’ persistent psychological distress triggered by disease recurrence risk and economic pressure of treatment.

Patient A: ‘I can’t sleep in the house. I walk around. I’m afraid of affecting her. Sometimes, I’m afraid of hurting the child. I blame myself very much. On top of my anxiety, I have body allergies and various other allergies. I’ve also been dealing with a toothache, which has cost me over four thousand yuan.’

Patient L: ‘I believe that the financial pressure on my family is largely a result of my actions. At my age, I am unable to earn a substantial income, and my physical limitations prevent me from making a significant contribution. I worry that I am adding to my family’s burden.’

Patient N: ‘It was quite devastating at first. I found myself wondering why this had to happen to me, especially since I already had several chronic illnesses, and then faced a diagnosis of bladder cancer. I felt that the burden of life was particularly heavy. I couldn’t sleep at night and spent the whole night ruminating on my fears: the fear that my condition would worsen and the fear of when I would have to leave my family …… These thoughts weighed me down.’

Sub theme 3: passive social withdrawal driven by physical limitation and disease stigma

The patients’ social lives were significantly affected. Many were either unwilling to go out due to the weakness caused by their illness or avoided socializing for fear of being perceived as a “joke” by others. The shame associated with their condition and the burden it placed on their family members only deepened their feelings of loneliness. Although there were times when they needed help, their personalities and reluctance to accept others’ concerns further intensified their isolation.

Context of illness experience

The following quotations illustrate involuntary social disconnection resulting from physical discomfort and stigma perception.

Patient A: ‘After that, I felt completely defeated. I used to play with them, but then I started bleeding while walking. I was too scared to go out for two months; I stayed home every day. I was afraid of people and felt like they would mock me.’

Patient K: ‘I don’t want to participate in outdoor activities. I’m afraid people will see me as weak, and I don’t want my family and friends to worry about me.’

Patient N: ‘When I’m sick, I don’t have the mood to engage with others. I don’t want to talk much about my illness, even with my family, for fear that they will worry about me. I know it’s incorrect, and it makes me feel a bit lonely, but I can do nothing about it.’

Theme 2: cognitive adjustment strategies constituting RS mechanisms

This theme constitutes the core psychological adaptation mechanism underlying postoperative RS, encompassing reconceptualization, recalibration, and reprioritization, which jointly drive multidimensional changes in RS among patients with bladder cancer. When facing the disease, bladder cancer patients use various psychological defense mechanisms to self-regulate: seeking emotional support by communicating with healthcare professionals and connecting with fellow patients to alleviate inner loneliness; establishing and executing new plans to regain control over the rhythm of life. Many find spiritual solace in redefining the meaning of life. To alleviate anxiety, they compare their experiences with others and focus on appreciating the present moment. Additionally, they reorder their life goals to uncover the true essence of life despite their suffering.

Sub theme 1: interpersonal communication supports facilitating the reconceptualization of self-worth

In the whirlwind of illness, many patients actively seek to connect with others to alleviate psychological stress by interacting with healthcare professionals, family members, or fellow patients. These connections are more than just physical assistance; they also offer spiritual comfort. Statements like “I often chat with nurses and doctors” and “fellow patients support each other on WeChat” illustrate how these emotional connections are essential to psychological resilience.

Context of illness experience

Patients obtain emotional comfort through multi-source interpersonal communication after diagnosis and treatment.

Patient C: ‘My daughter often accompanies me, and her optimism is infectious.’

Patient E: ‘The doctors and nurses in our department not only took good care of me during surgery and treatment, but also gave me valuable advice on post-operative care, which I greatly appreciate.’

Patient K: ‘I once attended a bladder patient group and met many others similar to me, and sometimes we chatted on WeChat and cared for each other.’

Corresponding RS mechanism

This subtheme reflects the reconceptualization of RS. Patients redefine their self-worth and interpersonal meaning, breaking the negative cognition of “being a useless burden” and reconstructing positive self-worth through mutual assistance and emotional resonance with family, medical staff, and peers.

Sub theme 2: self-managed daily routines promoting reconceptualization of healthy life standards

For some patients, illness does not signify giving in to despair. Despite facing health challenges, many maintain self-discipline and strive to restore a sense of rhythm in their daily lives. Some return to work and discover new meaning, while others keep control of their routines through carefully planned schedules.

Context of illness experience

Participants actively arrange daily work and rest to rebuild life order after surgery.

Patient G: ‘Even though I am retired, I have chosen to return to work, which makes me feel that I can still make a difference. I don’t work for money; I don’t want to be idle. My return to work allows me to regain the pace of my life and gives me a sense of fulfilment and satisfaction.’

Patient L: ‘Because I am a very organized person, after I got sick, I followed what the doctor said to create a reasonable life and work plan for myself. You can see that I made a booklet for myself. At the top are the precautions for changing the ostomy bag, and at the back, I listed my tasks for the following day, similar to a diary.’

Corresponding RS mechanism

This subtheme embodies the reconceptualization of RS. Patients reconstruct their understanding of a healthy life and self-worth, abandoning the stereotype that “illness equals incapacity” and redefining positive adaptation to life after surgery.

Sub theme 3: spiritual beliefs facilitating reconceptualization of disease suffering

Religious beliefs significantly contributed to the spiritual adjustment of some patients. Activities such as praying and attending church provided not only spiritual support but also an opportunity for patients to re-evaluate the meaning of life. Many found comfort and strength in the spiritual dimension, using their faith to navigate their experience with illness.

Context of illness experience

Several patients relieve psychological distress through religious activities after disease onset.

Patient C: ‘I didn’t believe in Jesus before, but my mother did. After I got sick, my mother said that I should go to church, saying that my illness was a punishment for trying too hard and that I didn’t value my body. I realized she was right after attending church and speaking with the priest. Now, I pray often and listen to the Bible’s teachings, which remind me that everything has its place and that I shouldn’t rush through life.’

Patient D: ‘I frequently visit temples to pray for my recovery and for other patients to find comfort and help.’

Corresponding RS mechanism

This subtheme corresponds to the reconceptualization of RS. Patients reshape their understanding of suffering, gains and losses, and life’s destiny through spiritual cognition, thereby completing the redefinition of disease’s significance.

Sub theme 4: inter-patient comparative appraisal leading to recalibration of health evaluation criteria

Some patients found the courage and comfort they needed by comparing themselves with others. In the hospital, patients shared their experiences with treatment and physical conditions. Through these comparisons, many realized they were not alone, which brought them a sense of relief. Some patients even learned to appreciate their current health and life by observing others.

Context of illness experience

Participants adjust their mental state by comparing their own physical symptoms with other inpatients.

Patient E: ‘Later on, I met a patient who had relapsed four or five times and had already undergone many surgeries, and she also had high blood pressure and breast cancer. I only had this one illness, so it wasn’t easy for any of us.’

Patient K: ‘I’ve encountered many optimistic patients, even when facing serious health problems. I then also reflected on myself in these patients. Regardless of the challenges we face, life must go on. I cannot keep complaining and should maintain a positive mindset.’

Patient N: ‘After comparing my situation to others, I realized I was sometimes quite lucky. At least my family was supportive, and the doctors were attentive. Some people in the same ward are even sicker than I am. Looking at them, I feel a sense of relief and understand how to treasure what I have now.’

Corresponding RS mechanism

This subtheme fully manifests the recalibration of RS. Patients reset their internal evaluation criteria for physical health; after witnessing more severe conditions in other patients, they lower their previously high standards for physical comfort and tolerate postoperative symptoms, thereby recalibrating their benchmarks for health judgment.

Sub theme 5: voluntary concealment of discomfort leading to recalibration of physical tolerance thresholds

This subtheme is conceptually distinct from the passive social isolation described in Theme 1 Subtheme 3. The latter refers to involuntary social withdrawal and loneliness caused by disease shame, physical weakness, and fear of external judgment, where patients are forced to isolate themselves from social interaction. In contrast, this subtheme reflects patients’ active and voluntary coping strategy: patients have access to sufficient family and medical support, but they consciously choose to endure physical pain and psychological distress silently. They refrain from sharing suffering with others to avoid becoming a burden to their families, relying on their inner tenacity to cope with illness independently, which represents a positive, proactive psychological adaptation rather than passive social isolation. Some patients chose to bear their pain alone. While they acknowledged the support available to them, they firmly believed they must rely on their own strength to overcome their challenges.

Context of illness experience

Patients deliberately hide physical discomfort to reduce psychological burden on relatives.

Patient F: ‘To be honest, I don’t like to bother others, so I didn’t take the initiative to seek outside help. I used to avoid discussing my problems, thinking I could get through them. I also don’t like sharing details about my illness with my family because I don’t want them to think that I’m failing in any way.’

Patient M: ‘There’s nothing you can do about it, so you have to put up with it because the doctors have said that these are normal. You have to listen to the doctor and actively cooperate with the treatment. It’s useless for my family to talk about it. The pain is my issue, and I won’t discuss it with them; it doesn’t help. I’ll keep a record of it and share it with doctors. Some of these symptoms are normal, so there’s no need to bring them up.’

Corresponding RS mechanism

This subtheme reflects the recalibration of RS. Patients actively accept persistent postoperative discomfort, adjust their cognitive standards for “healthy and pain-free physical state”, and tolerate chronic symptoms, representing a positive reset of physical evaluation criteria.

Sub theme 6: restructuring life value hierarchy, generating reprioritization of life pursuits

Illness prompts many patients to reevaluate the purpose and meaning of life. Previously, their focus may have been on making more money, but they now prioritize pursuing inner peace and fulfillment rooted in good health. This shift in life goals reflects a profound reevaluation of life’s value.

Context of illness experience

A tumor diagnosis changes patients’ long-term life-pursuit orientation.

Patient G: ‘After my previous mastectomy, I thought that my health was the most important thing, so I gave up a lot of work. However, during that time, I didn’t feel valued. Nevertheless, my husband and daughter supported me in continuing to do what I love, so I returned to work. Coming back felt like I had regained my life. I was busy, yet fulfilled. So, while being physically healthy is important, I want to pursue what I love without any regrets.’

Patient J: ‘In the past, I might have focused on earning more money and working hard to support my large family. But now, I believe that being able to thrive in good health is what truly matters, and I still expect to lead a good life.’

Corresponding RS mechanism

This subtheme is the typical manifestation of RS reprioritization. Patients rearrange their life value hierarchy, shifting the core pursuit from material gains and career development to physical health, inner peace, and QOL.

Theme 3: two divergent adaptive outcomes after exposure to bladder cancer stress

In the face of bladder cancer, two distinct psychological adaptive outcomes were identified: some patients persist with treatment, accept themselves, and seek the meaning of life with a positive mindset accompanied by complete RS transformation; in contrast, others become despairing due to recurring symptoms, fail to adjust cognition, and lose confidence in treatment (deviant negative cases without effective RS).

Sub theme 1: positive adaptive outcomes with comprehensive RS

Despite the severity of their illnesses, some patients still choose to persevere in treatment after receiving various types of help, learning to let go of their fear of disease, accepting their vulnerabilities and imperfections, turning anxiety into motivation, finding the meaning of growth in their illnesses, maintaining hope for recovery, and striving to overcome the discomforts and disturbances brought about by their illnesses. This positive adaptive outcome integrates three RS types: recalibration (tolerating minor life setbacks and physical discomfort), reprioritization (valuing health and life), and reconceptualization (redefining the value of life and happiness).

Context of illness experience

Participants with stable disease status actively adjust cognition and adhere to standardized treatment.

Patient I: ‘I have placed a much higher importance on my physical health after going through this. I have started paying more attention to maintaining a healthy lifestyle and scheduling regular medical check-ups.’

Patient J: ‘My perspective has changed. I now value every moment of life more than I did before, and I have learned to understand and empathize with the suffering of others. I used to worry about minor issues, but now I focus on the bigger picture and have become more tolerant and understanding of the small things in life.’

Sub theme 2: maladaptive despair without effective RS

In the face of relapse or worsening of the disease, some patients feel that there is little hope for survival, and even contemplate giving up treatment and falling into deep despair. No effective RS occurs in this subgroup. Patients fail to adjust their health-evaluation standards, life priorities, and cognitive concepts, resulting in maladaptation rather than positive RS transformation. These deviant cases differ from the mainstream positive cognitive adjustment and are analyzed separately to enhance the credibility of the research.

Context of illness experience

Patients with recurrent progressive lesions show persistent negative cognition and refuse cognitive adjustment.

Patient A: ‘Sometimes, I look at others and feel discouraged. Here are some patients undergoing cystoscopy, and some have undergone their seventh operation. I’m starting to lose faith in my chances of survival.’

Patient H: ‘I saw a man in the bed next to me, and I wondered if he would have to have his bladder removed. If that’s my fate, I’d rather not be treated at all; I would prefer to stay home and die. Please, do me a favor. Call me in three months. If I don’t answer, it means I’m gone. At least someone will know I’m no longer here.’

Discussion

This study takes bladder cancer patients as the research population to explore the phenomenon of RS that occurs after bladder cancer treatment. It examines how patients adapt to their circumstances and aims to provide insights into the application of RS theory among Chinese patients with bladder cancer. Consistent with the qualitative thematic results, the full shift in postoperative response can be systematically mapped to the three RS types: recalibration, reprioritization, and reconceptualization. Theme 1 reflects pre-RS adverse physical, psychological, and social stressors, which act as necessary antecedents triggering subsequent RS. Theme 2 captures adaptive pathways that jointly constitute the formative mechanism of RS: interpersonal connection, self-discipline, and religious comfort collectively drive reconceptualization; peer comparison and voluntary self-endurance trigger recalibration; the transformation of life goals directly leads to reprioritization. Theme 3 further presents two divergent outcomes of RS activation: patients with sustained hope achieve complete triple RS transformation, while those trapped in hopeless abandonment fail to undergo any RS cognitive adjustment. Through interviews, we can see that some patients, despite the disease’s tormenting pain, gradually accepted their vulnerability and imperfections with the support of their family members, changes in their life goals, and self-improvement, indicating that they underwent a shift in their internal standards. Some patients shifted their focus to their families, indicating a change in their values. These changes prompted patients to reevaluate their health status during the adaptation process. However, when confronted with a complex condition, some patients’ assessment of their self-health also showed low levels due to coping styles such as avoiding and yielding. Notably, our thematic analysis of participants receiving TURBT versus RC did not identify distinct, exclusive themes of RS between the two subgroups; all mechanisms underlying RS summarized in this analysis were shared by both patient groups despite their divergent surgical regimens and postoperative physical conditions. These findings are consistent with those of Rohn [30]. RS refers to a change in the connotation of the goal concept when patients experience a change in their health status, leading to corresponding shifts in self-assessment. According to the theoretical model of RS [31], coping, social support, and social comparison can contribute to RS. The emergence of RS may impact treatment progress and patients’ attitudes toward it. By understanding the impact of RS on patients in future studies, healthcare professionals can help patients better manage emotional fluctuations and develop healthier self-evaluations, ultimately promoting psychological growth and improving treatment outcomes.

The driving mechanism of RS in bladder cancer patients

Social support driving RS

The interview results indicated that the primary sources of social support for patients during their illnesses were family members, healthcare professionals, and fellow patients, all of whom facilitate patients’ better adaptation to the process of health change, consistent with the findings of Beeken [32]. Throughout the treatment process, healthcare professionals and the healthcare insurance system, as sources of professional support, can significantly enhance the patient’s ability to access healthcare resources, thus effectively reducing the patient’s burden of care. Family members and friends offer material and informational support to patients, motivating them to adopt healthier lifestyles by sharing relevant social information and health knowledge. Additionally, emotional support from family members can significantly improve patients’ QOL and treatment adherence. However, family support may also cause stress when family members feel powerless or overly worried. Such patients will be more inclined to find empathy with fellow patients, whose support and empathy can provide great emotional comfort. By sharing experiences and encouraging one another, patients can alleviate feelings of isolation and increase their resilience in coping with difficulties [33]. It is also common for many cancer patients to avoid socializing during treatment, particularly with uninformed friends and colleagues. Self-absorption may affect the patient’s emotional support system and make them more isolated during the treatment journey. Interpersonal emotional resonance built via multi-layered social support reconstructs patients’ understanding of self-worth, which serves as a core pathway generating reconceptualization of RS.

Self-identity driving RS

Interviews revealed that some patients found self-worth in maintaining regularity and self-management. Unlike patients who reordered their goals or reframed their expectations, these patients focused on positive emotions and self-perceptions in adapting to existing dilemmas. For example, some patients engage in work, develop life plans, and track daily tasks to restore their rhythm and boost their confidence, ultimately improving their self-efficacy. Post-retirement patients seek self-worth through re-employment, while others gain a sense of self-worth by sharing their experiences. Those who are good at planning create daily plans to regain control of their lives, as verified by Rohn et al. [30] Additionally, Ke found that individuals who experience a traumatic event tend to increase their strength, self-efficacy, acceptance, and sense of responsibility after the traumatic event, which enables them to overcome the situation more quickly [34]. Furthermore, Slade demonstrated that following a traumatic event, patients can satisfy their need for self-worth realization by improving their self-management [35]. Therefore, healthcare professionals are encouraged to provide comprehensive interventions throughout the continuity of care process, guiding patients to discover new possibilities and promoting post-traumatic growth. Meanwhile, patients’ families are advised to support them by allowing them to complete manageable tasks and offering positive reinforcement after they demonstrate self-management. Continuous self-discipline and reconstructed self-identity reshape patients’ definition of valuable post-illness life, another critical pathway leading to RS reconceptualization.

Religious support driving RS

Religious beliefs provide an important spiritual support and framework of meaning for many cancer patients. Interviews have shown that patients with religious beliefs would reconstruct the meaning of life through prayer, which is consistent with Wei Lin’s finding [36], in which cancer patients explained the progress of their disease in terms of a religious conception of death. The implementation of psychological interventions by caregivers that incorporate religious characteristics could help improve the QOL of terminally ill cancer patients with religious beliefs, thereby enabling them to understand the progression of their disease more accurately. Moreover, belief in reincarnation in most religions can help patients face death more peacefully, thereby improving their negative experiences during illness. Andera et al. also found that the certainty of believing in God and attending religious services could enhance the health status of long-term cancer survivors [37]. Interestingly, even patients who do not identify with a religion sometimes use prayer for psychological comfort. Therefore, healthcare professionals must respect patients’ religious beliefs and refrain from dismissing or undermining their religious experiences. Spiritual cognition, reshaped by religious faith, reinterprets suffering and life’s destiny, forming an auxiliary pathway for reconceptualization in RS.

Social comparison driving RS

The interviews showed that comparing themselves with other patients helped them better understand their situation, thereby lowering their standards for self-assessing their health status. Some patients also found the strength to adjust through the strength and optimism of others. Xiao Juan observed that patients experience heightened social comparison during their hospitalization. In China’s collectivistic culture, individuals tend to be more concerned with how they are evaluated by others, increasing the likelihood of self-comparison with fellow patients. This comparison helps patients to value their current health and life more and reduce excessive anxiety about the disease. Still, sometimes patients with high social comparisons can be influenced by others, which can lead to negative effects such as jealousy and anxiety [38]. The social comparison theory states that upward comparisons often lead to self-depreciation [39]. However, some individuals may enhance their self-competence through upward comparisons to reach the same level. Parallel comparisons can increase self-stability, while downward comparisons can increase a sense of self-worth. As a universal social phenomenon, social comparison can have a negative impact, particularly when it involves upward comparisons. However, caregivers can improve patients’ subjective well-being by boosting their self-esteem and helping them develop a more positive self-image. For the self-enhancement brought about by upward comparison, timely affirmation is provided. At the same time, nursing staff can provide patients with successful cases of the same or worse conditions to guide them in making parallel and downward comparisons, thereby enhancing their self-evaluation. Downward peer comparison directly resets patients’ internal benchmarks for physical health evaluation, the core psychological process that generates RS recalibration. Additionally, patients’ voluntary, silent endurance of persistent postoperative symptoms further reinforces this recalibration.

Adjustment of life goals and expectations driving RS

This study found that cancer patients often change their value orientation during treatment through a readjustment of life goals or the reshaping of expectations. During treatment, patients may realize that health, family, and inner peace are more important than previous material pursuits, and they can rebuild their life goals by adopting healthy habits and reengaging with their social life. This finding is consistent with Menger, who also demonstrates that individuals often adjust the priorities of their life goals after experiencing a traumatic event, becoming more inclined to strengthen family relationships and adopt healthier behaviors [40]. The shift in life priorities from material pursuits to health and family is the most typical manifestation of reprioritization, one of the three types of RS.

In summary, the qualitative findings revealed a complex driving mechanism for RS in patients with bladder cancer, highlighting the importance of self-identity relative to the theoretical model of RS. Previous studies have also emphasized the significance of self-identity in the adaptation process [30]. Consequently, future research could explore clinical practice interventions prioritizing self-identity as a key factor, enabling patients to transform their illness experiences into valuable resources for self-identity through narrative therapy.

Strengths and limitations

This study’s strength lies in its in-depth exploration of PRO changes and postoperative psychological adjustment among bladder cancer patients from the theoretical perspective of the RS model. The findings yield three valuable contributions. First, this work represents the application of RS theory to interpret PRO alterations in patients undergoing bladder cancer surgery, thereby expanding the practical explanatory value of this theory in urological oncology research. Secondly, the six-mechanism analytical framework constructed in this study systematically sorts patients’ complex subjective adjustment processes and provides a more holistic, layered, and comprehensive understanding of fluctuating postoperative PROs. Finally, the identified multi-faceted RS pathways capture how patients recalibrate evaluation standards, reconstruct personal values, and reorder life goals to adapt to physical and psychological burdens after TURBT or RC surgery. However, the study does have some limitations. First, the sample size is relatively small, which may restrict the transferability of the present research findings to other bladder cancer populations with different disease stages, treatment types, or follow-up time points. Specifically, the subgroup of patients receiving RC only contained 2 participants; theoretical saturation may not have been achieved within this small RC subgroup, meaning unique RS-related perspectives exclusive to RC survivors may remain undiscovered in the current dataset. Second, the interviews were conducted three months after surgery and did not include comparisons with participants’ experiences before the surgery. Future research could address these limitations by expanding the temporal dimension and increasing the sample size, particularly by recruiting more RC patients to better explore subgroup-specific clinical characteristics and patterns of psychological adaptation. This is critical for refining targeted clinical interventions and enriching future stratified research on bladder cancer, thereby improving the robustness and transferability of the findings.

Conclusion

Based on the RS theory, this study conducted an in-depth analysis of PROs in patients with bladder cancer three months post-surgery. The results revealed that RS is a common phenomenon observed during the postoperative recovery. Although this phenomenon is part of the patients’ autonomous adaptive process and cannot be prevented by healthcare professionals, identifying its specific manifestations and mechanisms enables a more comprehensive understanding of patients’ subjective experiences and helps avoid misinterpretation of treatment outcomes. Notably, bladder cancer survivors demand sustained professional support and guidance in postoperative aftercare. Medical professionals should provide comprehensive, continuous interventions across the full continuum of care to guide patients to explore new possibilities and foster post-traumatic growth, while families ought to allow patients to complete manageable tasks independently and offer positive reinforcement once patients maintain sound self-management. The study results suggest that clinical practice should emphasize psychological and cognitive changes during the disease adaptation process, promote patient-centered care models, and improve the scientific and effective use of individualized interventions.

Abbreviations

HRQOL

Health-Related Quality of Life

NAC

Neoadjuvant Chemotherapy

NMIBC

Non-Muscle-Invasive Bladder Cancer

MIBC

Muscle-Invasive Bladder Cancer

RC

Radical Cystectomy

RS

Response Shift

PREMs

Patient-Reported Experience Measures

PROs

Patient-Reported Outcomes

PROMs

Patient-Reported Outcome Measures

TURBT

Transurethral Resection of the Bladder Tumor

Authors' contributions

Yanqing Kang: Writing-original draft, Writing-reviewing and editing, Methodology, Conceptualization. Gaoting Zhong: Data curation, Investigation, Formal analysis, Methodology, Conceptualization. Ya Zhang: Writing-original draft, Investigation, Formal analysis. Ziling Chang: Investigation, Data curation, Software. Tianmeng Wang: Writing-reviewing and editing. Mei Huang: Writing-reviewing and editing, Conceptualization. Rui Gao: Writing-reviewing and editing, Software, Supervision. Ning Li: Writing-reviewing and editing, Project administration, Supervision. Aili Lv: Writing-reviewing and editing, Project administration, Supervision, Methodology, Conceptualization. All authors provided final approval for the version to be published. Each author was sufficiently involved in the work to take public responsibility for its content. All authors agreed to be accountable for every aspect of the work, ensuring that any questions about the accuracy or integrity of any part are properly investigated and resolved.

Funding

This research was funded by the National Natural Science Foundation of China for Young Scientists (Class C) (72504281).

Data availability

The raw data supporting the conclusions of this article are available from the authors on reasonable request.

Declarations

Ethics approval and consent to participate

This study was conducted according to the Declaration of Helsinki and received review and approval from the First Affiliated Hospital of Xi’an Jiaotong University, with ethics approval number (XJTU1AF2024LSYY-225). Throughout the study period, strict adherence to the principles of informed consent, confidentiality, and non-harm was maintained. Before distributing the questionnaires, all the patients signed the informed consent form. They indicated that they understood the study’s nature and purpose and were aware that their personal information would not be disclosed.

Consent for publication

The authors affirm that human research participants provided informed consent for publication of the manuscript.

Competing interests

The authors declare no competing interests.