Exploring the posttreatment care experiences and unmet needs of breast cancer survivors: a descriptive phenomenological study

doi:10.21203/rs.3.rs-5029610/v1

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Exploring the posttreatment care experiences and unmet needs of breast cancer survivors: a descriptive phenomenological study

https://doi.org/10.21203/rs.3.rs-5029610/v1

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Background Addressing the unmet needs of breast cancer survivors’ post-treatment are crucial for enhancing their quality of life and promoting their overall health outcomes. This study aims to explore the unmet needs of post-treatment breast cancer survivors within social ecosystems. It provides a patient perspective for the development of a supportive framework that healthcare providers can use to assess and manage these unmet needs.

Methods Utilizing a qualitative descriptive design, this study conducted semi-structured interviews with twenty breast cancer survivors. Colaizzi’s 7-step method was employed for data analysis.

Results The study identified three themes and nine subthemes: (1) microsystem—normalization and self-growth (management of somatic symptoms and function, maintenance of body image, femininity, and sexuality, and adoption of healthy behaviors); (2) mesosystem—acceptance and respect in the family and workplace (internal to the mesosystem—strengthening family resilience; external to the mesosystem—provision of return-to-work assistance); (3) macrosystem—expansion of the support system (diverse treatment facility support, accessible integration of communities, health and payment policy favoritism, destigmatization of cancer).

Conclusion This study offers new insights into the perspectives of breast cancer survivors regarding unmet needs after completing active treatment. It recommends that the interdisciplinary team offers person-centered, integrated, and coordinated supportive care that addresses the individualized and complex needs of post-treatment breast cancer survivors and their caregivers. Future research should focus on developing survivorship care plan models that prioritize personalized support for individuals recovering from breast cancer treatment.

Breast cancer survivors

Breast neoplasms

Qualitative study

Supportive care

Unmet needs

Social ecosystems

Breast cancer remains the most prevalent malignant tumor among women worldwide, with approximately 2.3 million new cases in 2022, accounting for 11.6% of all cancer cases[1]. China leads the global tally with roughly 0.42 million new cases, representing 19.9% of all new female cancer cases in the country; it significantly impacts the health and lives of women[2]. Studies have shown that the 5- and 10-year survival rates for breast cancer patients are as high as 90% and 80%, respectively[3]. The advancements in early detection and treatment have significantly enhanced the long-term survival rates, allowing more patients to successfully transition into remission and post-cancer life. Currently, there are an estimated 7.79 million breast cancer survivors (BCS) worldwide[4].

The high survival rates have prompted a shift in cancer care research from merely focusing on survival to improving quality of life and psychosocial adaptation post-treatment. Despite these improvements, BCS may face significant challenges transitioning to permanent survivorship, often several years after completing active treatment. Post-treatment, they often experience long-term antitumor side effects such as fatigue, lymphedema, sleep disorders, pain, menopause-like symptoms, sexual and reproductive issues, and cognitive dysfunction, as well as psychosocial issues like anxiety, fear of cancer progression, body image concerns, relationship difficulties, and occupational economic challenges[5, 6]. Additionally, cancer survivors often encounter unmet supportive care needs, including restricted appointment availability, increased medical expenses, and challenges accessing treatment locally due to centralized care[7]. Overall, these factors contribute to numerous unmet needs that markedly affect survivors' quality of life in terms of physical, psychological, and social well-being[8]. Therefore, addressing the post-treatment needs of BCS is essential for providing effective healthcare.

Supportive care includes diverse interventions and healthcare services tailored to meet the needs of individuals throughout their cancer survival journey[9]. Efforts are underway globally to develop survivorship care models and programs that address the complex unmet supportive care needs of survivors and enhance the standard of follow-up care[10-12]. Previous studies have shown that between 32.4% and 82.6% of women with breast cancer reported at least one unmet care need[13, 14]. Effective identification and improvement of these unmet needs not only increase survivor satisfaction and enhance the quality of cancer-related medical services, but are also crucial for providing appropriate medical services to survivors and the efficient allocation of medical resources.

Unmet needs are those that remain unaddressed and signify a discrepancy between delivered healthcare services and individual expectations[15]. Indeed, BCS report several unmet healthcare needs. For example, unmet physical needs encompass difficulties managing treatment sequelae such as pain, swelling, sensory impairments, and even lymphedema in the affected arm[16]. These physical challenges often restrict their mobility, necessitating additional support for daily activities and return to work[17]. Moreover, BCS have expressed informational/educational and patient-clinician communication needs concerning effective treatment options, potential side effects, timely tumor monitoring, and lifestyle management. With infrequent hospital visits and extended intervals between consultations, patients increasingly rely on the Internet and their social networks for information[18]. Providing timely and transparent information is vital to enhance patient-provider communication and empower patient decision-making. Additionally, young women with breast cancer face more significant unmet needs regarding sexual functioning, fertility, and social relationships compared to their non-cancer counterparts[19]. As a result, failure to address these needs can lead to negative outcomes, such as decreased satisfaction with care, poor treatment adherence, increased psychological distress, diminished quality of life, and even treatment discontinuation[20].

A systematic review indicates that the health-related quality of life of BCS is poorer than that of the general population in Asia[21]. Prior research has highlighted unique challenges for Asian BCS, including the negative impacts of cultural factors such as cancer-related stigma, emotional suppression, the traditional role of women as caregivers, inadequate healthcare services, and a lack of social support[22]. Unlike Western cultures, Asian societies are collectivist, emphasizing the interconnectedness of individuals within larger social groups[23]. This collectivism, reinforced by Confucian ethics that view the family as the basic social unit, promotes a high value on maintaining harmonious, interdependent family relationships[24]. Given the disparities in socio-demographic factors, culture, racial backgrounds, healthcare systems, and service provision between countries, expectations for cancer survivorship care and the expression of unmet needs are likely to vary. Thus, understanding the specific needs of patients as they transition into survivorship is crucial, particularly for developing supportive care frameworks that are culturally appropriate for the Chinese context. However, the majority of studies have been conducted in Western settings, resulting in a scarcity of research on survivorship care for Chinese cancer survivors.

Most research on care experiences and unmet needs of BCS has focused on personal factors, which may obscure a comprehensive understanding this phenomenon. The theory of social ecology asserts that systems interact with and influence individual development, distinguishing three basic types of human social ecosystems: microsystems, mesosystems, and macrosystems. Microsystems encompass individual systems, including biological, psychological, and social subsystems that influence behavior; mesosystems include small-scale groups such as families and workgroups that impact individual systems; and macrosystems encompass larger entities such as organizations, institutions, and broader community and sociocultural environments[25]. BCS, situated within specific environments, face challenges in social rehabilitation—an external manifestation of system failures to effectively coordinate and cooperate. Therefore, exploring the unmet needs of BCS through the lens of social-ecological system theory and implementing holistic supportive care measures is a feasible approach. Therefore, this study explores the post-treatment care experiences and unmet needs of BCS. The insights from this study could significantly influence healthcare practices, interventions, and policies aimed at addressing the unmet supportive care needs of BCS, ultimately enhancing the quality of survivorship life.

Design

A descriptive qualitative design utilizing face-to-face semi-structured interviews was employed. Descriptive phenomenology is the optimal approach to employ in research aiming to unveil universal elements of lived experience, providing a deep comprehension of the essence of the phenomenon being examined. Colaizzi’s descriptive analysis framework was used to extract experiences related to unmet needs of BCS[26]. The criteria for reporting a qualitative study (COREQ) checklist guided the design and reporting of this study to ensure quality (see Additional file 1)[27].

Sampling and recruitment of participants

Participants were recruited from the outpatient services of a mammology department at a tertiary oncology hospital in in Changsha, Hunan Province, mainland China, from October 2022 to October 2023. Selection was through electronic health records and clinical staff referrals. Purposive sampling ensured the inclusion of individuals who could provide significant insights into the phenomenon of interest. Eligibility criteria included: (1) having undergone a pathological examination and diagnosis; (2) being aware of their diagnosis; (3) having completed primary therapy (surgery, and/or chemotherapy, radiation); (4) being capable of participating and articulating their experiences. Exclusion criteria were: (1) terminal illness; and (2) mental illness or communication impairments. The sample size was determined by the saturation of data through the repeated occurrence of information.

The first author, an experienced oncology specialist nurse currently overseeing follow-up care in the mammology department, approached potential participants during clinical practice. Maximum variation sampling was employed, utilizing information from medical records to capture diverse sociodemographic and medical characteristics of participants. After building trust, the first author outlined the study's purpose, procedures, benefits, risks, and the use of audio recording for the interviews. Initially, 23 patients were invited to participate; however, three declined. Reasons included reluctance to invest time in interviews and concerns about discussing personal feelings or exposing privacy. Ultimately, 20 participants were recruited for the study.

Data collection

Data were collected through in-depth, semi-structured interviews. To ensure consistency, all participants were interviewed by the first author, who is trained in qualitative research methodologies and interviewing techniques. Interviews were scheduled at optimal times and locations, considering participants' health statuses and preferences. An interview outline was developed based on the study's objectives and a literature review, revised through consultations with experts, and refined via pilot interviews with two participants (Table 1). All interviews were audio-recorded. Field notes capturing interviewees' facial expressions, body language, and the interviewer's reflections were taken immediately post-interview. Interview durations ranged from 31 to 62 minutes, averaging 42 minutes. No repeat interviews were conducted.

Data analysis

Data were transcribed verbatim into Chinese and analyzed using Colaizzi’s descriptive analysis[26]. Transcriptions were professionally done, and their accuracy was verified by the research team prior to analysis. Coding was conducted in Chinese, and themes and quotes were translated into English by the first author and back-translated by the second author to ensure fidelity to the original meanings. The analysis procedure included: firstly, coders re-reading the transcriptions, field notes, and reflections to immerse themselves in the data; secondly, independently coding the transcripts to identify meaningful units related to unmet needs and formulating categories; next, developing and integrating category and subcategory definitions into a consistent and comprehensive description; lastly, coders verifying the applicability of data for each category and subcategory. Discrepancies in interpretations were resolved through discussion until consensus was reached. Data were considered saturated when no new codes emerged; however, two additional participants were interviewed to confirm saturation. Typical quotes were selected to exemplify each theme and address the research questions. Providing participants with feedback on the outcomes is essential for validating the basic framework. Participants’ identities were anonymized using numbers (e.g. P01) to ensure confidentiality.

Trustworthiness

Trustworthiness was ensured to maintain qualitative rigor[28]. (1) Credibility: To enhance the breadth and depth of information, the interviewer developed trusting relationships with breast cancer patients through regular clinical nursing activities, allowing prolonged immersion and continuous observation. The author team held frequent meetings to develop, discuss, and refine themes, clusters, and categories. Results were shared with five participants who confirmed the accuracy of the analysis outcomes. (2) Confirmability: A detailed audit trail including the original recordings, verbatim transcripts, and data analysis records was maintained to enable future verification and traceability. (3) Dependability: To minimize bias and refine the coding framework, a qualitative theory expert outside the research team was invited for peer debriefing. The research team's assumptions and understanding were continually discussed to ensure dependability, aiming to minimize bias and accurately reflect participant experiences and perspectives. (4) Transferability: The diversity of participant characteristics and the depth of the quotations collected during in-depth interviews facilitated transferability.

Ethical considerations

Prior to recruitment, the study received approval from the Ethics Committee of Hunan Cancer Hospital (No. KY2022284). Participants were informed of their right to decline to answer any questions or withdraw from the study at any time without consequence and provided written informed consent before participating in the interviews. All data were confidentially maintained, securely stored, and only accessible to the research team. Identifying information was omitted from the transcripts, and participant names were anonymized as numbers (P01-P20). During interviews, if participants experienced psychological distress, the interviewer would pause, offer comfort, and decide whether to continue or terminate the interview based on the participant's comfort level after a calming period.

Twenty patients were interviewed, with a mean age of 37.2 years (range: 27–58 years). The majority of the patients were married (14/20) and unemployed (14/ 20). The average duration of disease was 33 months (range: 8–108 months). Detailed demographic and disease characteristics of the participants are presented in Table 2. In this study, the experience of unmet needs was comprehensively analyzed by categorizing them into microsystem, mesosystem, and macrosystem levels. Three themes and nine sub-themes emerged, reflecting BCS' unmet needs across these categories: microsystem (normalization and self-growth), mesosystem (acceptance and respect in the family and workplace), and macrosystem (expansion of the support system). Figure 1 illustrates these themes and sub-themes.

Theme 1: Microsystem —Normalization and self-growth

Management of somatic symptoms and function

This category encompasses three thematic clusters: ‘management of therapeutic adverse effects’, ‘functional rehabilitation’, and ‘control of metastatic recurrence’. Somatic symptoms and dysfunction impact participants' work, life, socialization, and basic physiological needs, creating significant unmet needs during the survivorship period. Participants undergoing complex integrated antitumor treatments report persistent somatic complaints, including nausea, pain, skin changes, and menopausal symptoms, which severely affect their quality of life.

“All the symptoms followed. After surgery, my chest felt like it was wrapped tightly in bandages. After chemo, I was nauseous, lost weight, and had significantly less energy than before. After radiation, the skin on my chest started peeling, then broke down and pushed out. Now I'm menopausal and have hot flashes and night sweats, but those don't seem to matter as much to the doctors because I survived. How I wish all of this could be effectively controlled so that I could return to my pre-illness state.” (Participant 2)

Additionally, participants described damage to lymphatic circulation and impairments in limb, sensory, and cognitive functioning due to treatment, which hindered their recovery. They expressed a desperate need for effective management to return to a "normal" state, which would facilitate the resumption of family roles and work.

“After being discharged from the hospital, my arms and shoulders moved awkwardly. My hands and feet would occasionally feel numb, like ant bites. My memory was not as sharp as it used to be, and my thinking had become sluggish. As an accountant, I cannot afford to make a single mistake, so it's quite challenging for me at the moment. I am unsure if I will be able to fully recover from all of this.” (Participant 3)

Despite completing successful surgery or chemotherapy, participants continued to harbor concerns about cancer recurrence and potential metastasis to other parts of their body. The fear of cancer recurrence was identified as the main source of their psychological anguish.

“Even though I had completed surgery and chemo for several years, when alone, I often had a thought all at once that I was afraid of the cancer coming back or metastasizing, which was a big part of my mind.” (Participant 6)

Seven participants experienced systemic symptoms such as pain, weight loss, anemia, and edema, as well as site-specific metastatic symptoms (involving the lung, liver, bone, and brain) during their survival period. They were highly motivated to find effective ways to manage recurrent metastatic symptoms to prolong their survival.

“This past year has been a struggle with repeated hydrothorax and unbearable pain, and I'm desperately hoping to manage it. I'm praying that the cancer won't spread and that I can extend my life (tears in my eyes).” (Participant 4)

Maintenance of body image, femininity, and sexuality

This category encompassed four theme clusters: ‘compensation for physical deficiencies’, ‘breast reconstruction’, ‘hair loss care,’ and ‘sexual and reproductive support’. Participants reported changes in body image following comprehensive treatment, such as missing breasts, hair loss, and altered appearance, which led to feelings of frustration, sadness, and diminished self-esteem. However, they also expressed hope that through image management, they could restore their feminine image and reintegrate into their families and society more positively.

Most participants in this study had undergone modified radical mastectomy, impacting their feminine characteristics. They expressed a desire to maintain their ideal female silhouette and compensate for postoperative physical changes using bras and prostheses. Each individual had specific preferences regarding the material, shape, availability, comfort, and fit of prosthetic breasts.

“I feel inferior due to my lack of breasts, so I have tried various methods to compensate for it. I have bought silicone and cotton breast prostheses, but neither of them is comfortable to wear. The silicone one is not breathable and causes me to get rashes when I wear it for extended periods in the summer, and it is too cold in the winter. The cotton one has uneven weights on both sides, making it difficult to maintain balance. At present, there are not many types of prosthetic breasts. We hope that in the future, we will have more choices in terms of fabric, style, material, and function.” (Participant 6)

Some participants began focusing on breast shape and aesthetics during their recovery to preserve their unique female characteristics, highlighting the importance of breast repair and reconstruction.

“As a young, unmarried woman, I am particularly conscious of the aesthetics of my form. Breast reconstruction is definitely something I plan to do when I am feeling better.” (Participant 15)

Participants described the loss of hair, eyebrows, and eyelashes as traumatic changes that diminished their feminine personality, attractiveness, and temperament, causing distress in daily life and interpersonal interactions. However, they noted that healthcare professionals often underestimated the psychological impact of hair loss.

“Healthcare professionals are used to hair loss in oncology patients, but as a female, it was extremely upsetting to observe my hair coming out in large amounts. My self-esteem was crushed, and I've been reluctant to go out ever since for fear of people seeing my ugly appearance. I think it's also necessary for healthcare professionals to provide hair care, such as regrowing hair.” (Participant 5)

Participants also expressed the need for skincare and cosmetic guidance to address surgical scarring, post-treatment skin pigmentation, broken fingernails, facial swelling, and other visible changes. They emphasized the importance of maintaining self-image, harmony in intimate relationships, returning to work, and social acceptance.

“The treatment altered my l appearance and I was aghast at what I saw. My skin was lackluster, my face was swollen, and since my job called for me to appear neat and attractive, I was hesitant to use any beauty products since I was apprehensive about their potential consequences. I can't even look at my scars, let alone my husband's. Can you get rid of them?” (Participant 10)

Due to medication and surgeries, young patients often experience symptoms such as decreased libido, vaginal dryness, and painful intercourse. These changes, coupled with fears of losing fertility, instill a deep sense of inferiority in patients. Influenced by traditional Chinese culture, many are reserved and discreet when discussing fertility and sexual experiences. Despite difficulties related to their sex lives or sexual dysfunction from treatment, many patients hesitate to discuss these issues with medical professionals due to fear of judgment or discrimination. Respondents appreciated the professional and authoritative information support provided by hospitals and expressed a desire for safe, professional information sources. Most participants expected professional information support and guidance to assist in making informed fertility decisions, wishing for medical staff to offer diverse information channels to satisfy their needs.

“Knowledge about this (sexuality and fertility) is necessary for me at such a young age, but it feels too embarrassing to ask in public. It’s hard to tell what's true on the internet, but we still trust our doctors the most. Hopefully the hospital will push out little articles and videos in the form of official accounts.” (Participant 13)

“When it is mentioned about sex and fertility, we would like to have more privacy, and it would be more convenient if hospitals could set up a small program for the whole management platform, so that we can communicate with our doctors online.” (Participant 10)

Adoption of healthy behaviors

This category encompassed three thematic clusters: ‘cultivation of a healthy lifestyle’ and ‘self-regulation of negative emotions. Experiencing the pain of illness, most participants began to reconsider their previous lifestyles and became more health-conscious. They sought to acquire accurate and comprehensive knowledge about diet, physical activity, Chinese medicine, and health maintenance to manage their treatment effectively and minimize the risk of illness recurrence and metastasis.

“Breast cancer is a chronic disease, and the main thing is to be persistent and maintain good habits so that you can live, so I change my old bad habits, such as staying up late, stop smoking and drinking, and I pay more attention to my health than before.” (Participant 11)

“After I was discharged from the hospital, I began to realize the importance of exercise, and in order to avoid relapses and complications, I tried to maintain a regular exercise routine, and I was also applying Chinese medicine to regulate my body, so as to ‘support the positive and dispel the evil’.” (Participant 18)

Despite professional treatment, participants experienced various negative emotions, including depression, anxiety, sadness, fear of relapse, and psychosomatic issues such as suicidal thoughts. They felt powerless and uncertain about how to seek help, expressing a need for professional psychosocial support.

“After treatment, I was in a terrible emotional state. Nothing interested me. Subsequently, due to the inadequate review results, I was unable to sleep the whole night. I was filled with negative thoughts and even contemplated suicide. Thankfully, my husband was aware and took me to psychotherapy. In reality, many patients surrounding me have psychological issues that need assistance to reduce their negative emotions and mental stress.” (Participant 12)

Theme 2：Mesosystem—Acceptance and respect in the family and workplace

Internal to the mesosystem—Strengthening family resilience

Breast cancer places significant stress on the entire family system, leading to the redistribution of family responsibilities, diminished intimacy, substantial financial burdens, and restricted family communication. Participants expressed a desire for their family systems to demonstrate resilience and support in appropriate ways to maintain healthy family functioning.

In China, where women often shoulder a larger share of caregiving tasks and contribute to the family's financial responsibilities, married participants noted the importance of receiving greater understanding and support from their family members, especially their husbands. This support includes managing household chores, caring for family members, and assisting with children’s education. Family members' mutual care, respect, effective communication, and shared understanding of each other's feelings are crucial in jointly facing the challenges posed by the disease, thereby enhancing family resilience.

“This is the 9th year of my illness, and everyone thinks it's a miracle of life, but in fact, my family, especially my husband's companionship, who never left me during my illness, took care of the household chores, took care of my young daughter, and we communicated with each other and never hid our bad feelings.” (Participant 1)

Unmarried participants expressed a need for robust support from their families, particularly from their parents. They hoped their parents would accompany them to medical appointments and assist in decision-making. In appreciation of their parents' commitment, they also desired time to recover and heal.

“I had just graduated from grad school and breast cancer had almost crushed me. I had cried late at night in the hospital, feeling so lonely. For me, there were only my parents, but they were out of town and had jobs. How I wished I could have been with my parents when they visited me and helped me make decisions.” (sobbing) (Participant 6)

External to the mesosystem—Provision of return-to-work assistance

Participants noted that returning to work represents a crucial step toward recovery from their illness due to its increased opportunities for socialization, financial resources, and the realization of self-worth. However, they faced numerous obstacles in the process, including limited re-entry options into the workforce post-recovery, fatigue, diminished energy, reduced work capacity that precludes performing previous roles, and fears that hastening their return might trigger a recurrence of cancer. Participants expressed that the current vocational rehabilitation guidance provided by medical staff, based on individual assessments, is inadequate. They also desire acceptance and respect from colleagues and supervisors, adjustments to their job duties to align with their current capabilities, and opportunities to assume more suitable roles.

“Employers may be hesitant to hire me due to my history of cancer, as I could request leave or resign unexpectedly and my work efficiency is not at its peak, thus I cannot be a regular employee of the company, only a temporary worker at best.” (Participant 7)

“After being back at work for six months, I'm still feeling embarrassed due to the rejection, taunts, or excessive concern from some of my colleagues. I'm willing to put in the effort to adjust to my work status and not hinder the progress of everyone else, if my leaders and colleagues give me the time to do so.” (Participant 17)

Theme 3: Macrosystem—Expansion of the support system

Diverse treatment facility support

This category comprised two thematic clusters: ‘authoritative and diverse medical information support’ and ‘optimization of medical resources.’ Disease-related information forms the foundation of treatment decisions for breast cancer patients and the scientific basis for their self-management. Most participants advocated that hospitals and national health organizations should provide patients with more knowledge and information support through multiple channels.

“Knowing little about the disease, it is clear that healthcare workers are too occupied to provide us with extensive knowledge. Unfortunately, the information available on the internet is not trustworthy. It would be beneficial if you could talk more about it, or if public hospitals created an official website or platform with cancer information.” (Participant 8)

“With cancer impacting so many people, the nation should take steps to educate the public on how to prevent and control it.” (Participant 9)

Considering the differences in age, cancer stage, treatment modalities, and adverse effects, participants expressed a diversity of needs for medical information during the survivorship period. Some participants would prefer to receive tailored instruction on topics such as cancer recurrence and metastasis, management of menopausal symptoms, contraception, improvement of sexuality and intimacy, and genetic counseling for tumors.

“I had a relapse and my emotional state was worse than when I was first diagnosed two years ago. Fortunately, I had the support of my doctor who told me that there was a cure. I will always remember the doctor's kindness as he examined my condition and discussed the treatment plan.” (Participant 19)

“The couple's life is not what it used to be…I often use the internet to look for information, but I'm unsure of its accuracy. Doctor doesn't talk about private issues such as sex and fertility either. It would be great if you could suggest a sexual health and fertility clinic or online counseling.” (Participant 13)

“I am a doctor, so I know that professional genetic testing is very necessary, if it is positive, the chances of recurrence and metastasis are very high, but at present, the testing in this regard is not common enough.” (Participant 15)

Participants expressed concern about the inconsistency of healthcare services received during the transition from active treatment to survivorship. Common needs identified for medical institutions included issuing longer-term prescriptions, optimizing follow-up appointment services, proactively providing reimbursement receipts, and enhancing the capabilities of internet hospitals. These changes would help reduce the costs associated with repeated treatments and cross-regional medical care.

“The hospital should improve the process of access, giving more thought to our requirements. For instance, when I have a review, I have to book two appointments to come to the hospital, which is a waste of time and money.” (Participant 13)

“It would be a great convenience to us if the hospital could offer the service of ordering medication online and having it delivered to our doorstep via express delivery.” (Participant 10)

Accessible integration of communities

This category included two thematic clusters: ‘accessibility of cancer survivor care in community continuity’ and ‘actively organizing activities for cancer patient group.’ Participants have high expectations for the continuation of cancer care within the community. They hope their local primary hospitals will provide effective symptom management, ongoing treatment, maintenance of vascular access, and physical rehabilitation for cancer care in the future. This would not only provide easier access to healthcare but also reduce unnecessary non-medical expenditures.

“It's so hard to get to the hospital every time! Besides having to book a bus ticket in advance, it takes over 5 hours on the road. It would be a lot easier and less expensive if our local hospitals were able to provide chemotherapy and radiation treatments and maintain retained venous catheters.” (Participant 8)

The community can actively coordinate and encourage social groups to organize various activities for cancer patients, thereby fostering peer support and facilitating the exchange of information among them.

“During my home rehabilitation time, I was quite lonely and had no social life. But with social workers introducing me, I found a group of breast cancer patients where I acquired understanding of how to recover and cope with my emotions. It was no longer necessary to pretend to be fine, as the group shared the same experience and could relate to each other.” (Participant 9)

Health and payment policy favoritism

This category included two thematic clusters: ‘optimization of health insurance structure’ and ‘convergence of healthcare organizations.’ Most participants noted that cancer treatment is costly and, coupled with decreased work capacity leading to reduced income, results in significant financial strain on patients and their families. Improvements in the country’s health and payment policies could alleviate this burden significantly. Participants specifically called for the extension of major illness medical insurance coverage, reduction in the cost of cancer drugs, and expansion of insurance reimbursement for these medications.

“I sometimes even want to give up treatment, considering the financial pressure. The most direct way to alleviate our burden now is to reduce the price of anti-cancer drugs, increase the reimbursement rate, and allow more drugs to be added to health insurance coverage.” (Participant 10)

Additionally, some participants expressed a desire for increased commercial insurance investment in medical care for breast cancer patients to lessen the financial burden of the disease.

“Before I got sick, I had taken out an insurance policy for major illnesses. The insurance firm gave me recompense, which helped to lighten my financial load and spared my family from taking on any of it. Nonetheless, there are still too few commercial insurance policies for cancer, and there are also many limits with regards to buying them.” (Participant 11)

Furthermore, interviewees expressed a need for high-quality, standardized, and equitable healthcare resources. This requires better integration between healthcare institutions and the development of healthcare consortia, which would help reduce redundant consultations across regions, improve patient experiences, and enhance survival outcomes.

“At present, there is a marked difference between regions in terms of the quality of medical resources, with most of the best care being located in "big hospitals" (tertiary hospitals). To ensure I receive the best care possible during my recovery, I would be greatly reassured if I had access to online consultations, remote consultations, and the sharing of health records.” (Participant 20)

Destigmatization of cancer

The public often stigmatizes cancer, associating it with “bad luck,” “death,” and “contagiousness.” This widespread cognitive bias against cancer patients is a significant factor in the macro-environment that hinders their recovery, survival, and ability to thrive and realize their value.

“My family and friends avoided me, believing that cancer would bring them misfortune. When I went back to work, my colleagues also questioned if I was still capable of doing my job due to my cancer-stricken status. All I wanted was to be treated like ‘normal people’.” (Participant 12)

This study provides detailed insight into the unmet needs and support of breast cancer patients during post-treatment survivorship, utilizing a socio-ecological system framework. To our knowledge, this descriptive phenomenological study is the first to specifically examine the post-treatment care experiences and unmet needs of BCS. This not only enhances the quality of life for BCS but also serves as a reference for healthcare practitioners to better assess and manage these unmet needs. The research demonstrates that a breast cancer diagnosis and subsequent treatment profoundly impact overall health, self-image, self-worth, and interpersonal relationships, disrupting their social-ecological system. Patients require involvement from healthcare professionals, family members, the public, and health policies, as well as personalized and compassionate care, to address their complex needs and maintain the balance of their social ecosystems.

The findings indicate that BCS experience long-term adverse effects such as fatigue, pain, lymphedema, menopausal-like symptoms, osteoporosis, and cognitive dysfunction throughout the survival period, which interfere with patients’ lives, aligning with previously reported studies on post-breast cancer treatment[29]. These effects increase the psychological burden on BCS and adversely affect their quality of life, delaying their reintegration into families and society. In our study, patients noted that even with the transition from primary care to survivorship, the recognition and management of somatic symptoms remain a critical yet underappreciated aspect of the survivor experience in terms of quality of life. This aligns with research indicating that patients often feel neglected due to decreased interactions with the healthcare system following primary treatment[30]. Previous studies have shown that BCS frequently feel unprepared for lingering side effects and are unsure about the severity of their symptoms post-treatment[31]. Moreover, patients often find the information provided during follow-up too general and feel uncertain about how to manage specific symptoms[32]. The study concluded that as patient needs vary, healthcare services must provide clear instructions on how to assess and further develop personalized early supportive interventions to prevent unnecessary long-term symptom distress and dysfunction after primary treatment, as optimal symptom management is crucial for healthcare providers. Additionally, healthcare professionals should actively investigate predictive factors of patients' cancer-related physical symptoms, as this knowledge can enhance early recognition and prevention of psychological distress and its adverse effects.

The majority of BCS interviewed reported experiencing varying degrees of cognitive dysfunction symptoms such as difficulty concentrating, memory loss, and reduced executive and information processing speeds, which persisted for several years post-treatment. Wefel et al.[33] indicated that the incidence of cognitive dysfunction in breast cancer patients ranges from 17% to 75%, with some patients still experiencing subjective cognitive complaints and persistent impairments three to four years after chemotherapy. This adversely affects the survivor's quality of life and daily functioning and becomes a barrier to their return to work and community integration. However, healthcare providers in this study were found to underappreciate the rehabilitation of cancer-related cognitive dysfunction in the care of BCS. This oversight may be attributed to the lack of routine cognitive function assessment in tumor patients in China[34], the absence of a simple and uniform standard for prevention or treatment, or insufficient attention by clinical personnel[35]. Therefore, it is essential to enhance the professional quality of healthcare personnel in cognitive function rehabilitation for BCS and provide scientific self-management education and support. Healthcare professionals can teach BCS various self-management strategies, including relaxation and stress reduction techniques, using notebooks, sticky notes, and schedule reminder tools to assist memory, avoiding multitasking, and reducing cognitive impairments caused by ethanol or non-chemotherapy medications. Additionally, they can encourage effective cognitive rehabilitation training and scientific exercise, and promote the positive effects of comprehensive interventions that combine symptom management, psychology, sleep, diet, exercise, and cognitive training to synergistically improve patients' cognitive recovery and quality of life[36].

Our study results revealed that most participants were affected by the fear of recurrence, and even after completing treatment, the anxiety about when it might resurface persisted. These findings align with a Korean study that identified ‘help in coping with fear of recurrence’ as the highest level of unmet need[37]. Previous research[5] has shown that breast cancer patients not only experience psychological distress following diagnosis but also fear of cancer recurrence and constant anxiety, which can lead to worsened quality of life, depression, anxiety, and insufficient follow-up surveillance. This suggests that healthcare providers should be attentive to these patients, promptly identify their fears of cancer recurrence, provide targeted information support—such as detecting new or recurrent metastatic tumor symptoms, screening for tumor genes—and guide patients to combat the fear of recurrence with a positive attitude. Assessing patient safety is crucial, as is consideration of referral to mental health professionals.

Our findings reveal that BCS, particularly younger ones, often experience more severe negative impacts on aspects of femininity, sexuality, marriage, and maternal characteristics than their healthy peers, thus generating specific healthcare supports and needs. The societal and cultural emphasis on physical beauty for young women means that breast loss, hair loss, scars, or other cosmetic imperfections can lead to negative body image perceptions[38]. It has been reported in China that young breast cancer patients face anxiety and depression due to changes in body image and sexual function[39], which can impair couple relationships and negatively affect reproduction[40]. Healthcare professionals should provide comprehensive explanations about breast reconstruction surgery and suggest alternatives for addressing cosmetic concerns, such as wearing wigs or caps, using prosthetic breasts, or making other cosmetic modifications. While research indicates that BCS are keen to learn about sexual and fertility assistance, the counseling they receive is often insufficient and can have significant health implications. Given the sensitive nature of 'sexuality' in China, it is crucial to tailor strategies to align with cultural norms and national maternity policies. During the recovery process, the focus should shift from treatment to reproduction, providing support for genetic testing, artificial insemination, pregnancy reviews, and other related reproductive care aspects to enhance the efficiency and quality of services. Healthcare professionals should offer face-to-face consultations that are supportive, informative, and confidential. Additionally, research shows a preference among young cancer patients for digital health interventions[41]. We recommend creating dedicated websites to assist in reproductive decision-making and to provide personalized fertility information support based on patient preferences.

Systematic reviews have demonstrated that a healthy lifestyle significantly reduces mortality risk in BCS[42]. Throughout their cancer journey, women require substantial healthcare support to foster healthy habits and enhance self-management. Many patients attribute their illness to previous unhealthy behaviors, leading to a heightened focus on health post-treatment. This often translates into increased consumption of health information, acquisition of wellness knowledge, and commitment to positive lifestyle choices, including exercise, diet and nutrition, mental well-being, and regular work and rest routines. Moreover, BCS are increasingly expected to take greater responsibility for their health management, involving tasks such as cancer genetic testing, screening for recurrence, exploring traditional Chinese medicine, and managing weight, cholesterol, diabetes, and blood pressure. There is growing evidence supporting the development and study of remote programs for BCS that promote rehabilitation, weight loss, and increased physical activity. These programs have the potential to enhance health-related quality of life and clinical outcomes, and can also help overcome traditional barriers to accessing and adhering to services provided primarily through face-to-face care models by a limited number of organizations.

Research indicates that only 60% of cancer survivors return to work within 1 to 2 years after completing treatment, and their unemployment rate is 1.4 times higher than that of the healthy population[5]. BCS who do not return to work face substantial financial burdens and experience high levels of physical, psychological, and social stress, adversely affecting their recovery[43]. Therefore, the reintegration of BCS into work and normalization of their lives warrant close attention from healthcare professionals. Challenges identified by BCS in returning to work primarily include declines in physical functioning (e.g., fatigue, cognitive impairment), the impact of negative emotions (e.g., depression, anxiety), and a lack of informational and medical support. The current clinical context often overlooks the occupational health needs of BCS, with discharge instructions rarely addressing aspects related to returning to work. Our study highlights that BCS require both external support and internal resilience to facilitate their return to work. Thus, it is essential to emphasize the successful experiences of BCS returning to work and to assemble a multidisciplinary team—including nurse specialists, occupational physicians, primary care physicians, rehabilitators, and psychologists—to collaboratively provide support[44]. For those unable to return to work successfully, interventions should encompass multiple dimensions, including physical, psychological, and social aspects, focusing on their physical and mental health and the support from their surrounding stakeholders. Additionally, effective tracking and follow-up post-return to work are crucial for BCS.

This study revealed that most BCS were willing to inform friends, relatives, coworkers, and leaders about their illness. However, some experienced discrimination and dismissal in the workplace after disclosing their condition. Due to such negative experiences, some BCS hesitate to disclose their medical history when applying for new jobs[45]. To promote the successful reintegration of BCS into the workforce as a positive behavioral change, it is essential not only for healthcare professionals to provide targeted interventions but also to shift societal perceptions of BCS and enhance the dissemination of cancer knowledge. This approach will improve public acceptance of BCS returning to work and reintegrating into society, helping to reduce and eliminate prejudice against this population. Additionally, workplace reluctance to hire or retain BCS is often economically motivated. Thus, it is recommended that the government increase promotion and support for the employment of young and middle-aged BCS. Workplaces should also receive preferential policies for hiring BCS, fostering a supportive humanistic and social environment for their return to work.

Most BCS in our study reported that in addition to covering surgery and treatment costs, they faced a significant reduction in income due to decreased labor capacity. This resulted in a substantial economic burden, contributing to financial strain for both the patients and their families. Consequently, they experienced emotional distress and engaged in treatment interruption behaviors. This aligns with the concept of economic toxicity, which encompasses the objective economic burdens associated with cancer and the resultant subjective economic distress. This can lead to a decreased in quality of life, increased emotional distress, and nonadherence to treatment, and is an independent predictor of treatment outcomes, subjective well-being, and quality of life among cancer patients[46]. The financial burden rates among women with breast cancer were reported at 78.8% in low- and middle-income countries and 35.3% in high-income countries[47]. We recommend enhancing doctor-patient cost communication by establishing a specialized cost communication team and conducting team training. Addressing negative psychological impacts due to financial issues, a study by Singer et al.[48] utilized a multidisciplinary stepped psychosocial care model to provide patients with personalized psychosocial support and a list of financial and emotional support resources, effectively alleviating the financial problems of cancer patients. While advances in breast cancer management have improved cure rates, they have also contributed to an unsustainable increase in the cost of care. Most BCS in this study also highlighted the need for more support and attention from healthcare institutions, health insurance policies, and society. They require access to tangible resources, such as reducing the price of anticancer drugs, expanding the scope of their reimbursement by health insurance, extending the duration of major medical insurance, enabling reimbursement across different locations, providing channels for social welfare funding, and optimizing review appointment services. These needs and expectations of BCS provide a patient perspective for constructing economically toxic intervention strategies and developing future survivorship care plans.

Limitations

This study has some limitations. First, our recruitment was limited to a relatively small sample size of BCS from only one tertiary hospital in mainland China. Our findings may not be representative of other BCS who do not exhibit these characteristics, thereby constraining the transferability and generalizability of our results. Second, the study did not include the perspectives of spouses or health professionals, which limits the ability to gain a more comprehensive understanding of the care experiences and unmet needs of post-treatment BCS. Third, each participant underwent only one interview, which restricts our ability to track changes in unmet needs over time. Future research should include more longitudinal studies, larger sample sizes, and different stakeholder perspectives to better understand unmet needs and supports among the broader population.

This study sheds light on the unmet needs of BCS within social ecosystems. Within the microsystem, patients described efforts to regain normalcy through personal endeavors but highlighted both unmet needs and a desire for more tailored support. Coexisting mesosystemic and macrosystemic challenges, including family and marital issues, workplace and financial pressures, and the prolonged recovery from illness, interact to impact the overall well-being of BCS. These areas have not received adequate attention. Therefore, it is vital to routinely implement comprehensive needs assessments in oncology settings. This is crucial for delivering person-centered, integrated, and coordinated supportive care via multidisciplinary teams, thereby addressing the individualized and complex needs of post-treatment BCS and their caregivers. Additionally, future research should focus on developing survivorship care plan models that prioritize personalized support following breast cancer treatment.

Relevance to clinical practice

Recognizing the diverse unmet needs of BCS and collaborating with clinical healthcare professionals to engage in holistic, comprehensive, and multidisciplinary teamwork is crucial. This approach aims to improve outcomes, reduce healthcare strain, and enhance the overall well-being of those affected by breast cancer. The findings of this research offer significant implications for clinical practice and provide healthcare practitioners with recommendations for interventions that can enhance the quality of life for BCS. Future research should consider implementing a tailored follow-up care system and incorporating educational strategies for BCS and healthcare providers to enhance the consistency of survivorship care. Furthermore, the refinement of sustainable healthcare delivery strategies, financial support policies for survivorship, and equity in social reintegration is crucial in creating a supportive social-ecological environment for BSC.

BCS Breast Cancer survivors

COREQ Consolidated Criteria for Reporting Qualitative Studies

Acknowledgements

We express our appreciation to the study participants for sharing their experiences with us. We also thank all the medical staff at the hospital who supported the interviews.

Author contributions

XWJ involved in conceptualization, investigation, writing—original draft preparation; ZCC involved in conceptualization, data curation, supervision, writing—reviewing and editing; LCJ involved in methodology and writing—original draft preparation; ZLL involved in methodology and investigation; GX involved in methodology and investigation; ZL involved in methodology and investigation; LXY involved in conceptualization, supervision, writing—reviewing and editing, project administration and funding acquisition.

Funding information

This study was supported by 2022 Hunan Provincial High-Level Health Talents [Xiang Wei letter [2023] No. 32]; 2023 Hunan Provincial Natural Science Foundation, Grant/Award Number: 2023JJ60328; 2023 Scientific Research Project of Patient Safety Research Center of Zigong City Social Science Association, Grant/Award Number: HZAQ-2023-14.

Availability of data and materials

The results generated during the study are not publicly available due to

ethical considerations but are available from the corresponding author on

reasonable request.

Ethics approval and content to participate

Ethical approval was received from the Ethics Committee of Hunan Cancer Hospital (Approval: No. KY2022284). This study was conducted in accordance with the Declaration of Helsinki. The authors confirm that all methods were performed in accordance with the relevant guidelines and regulations. Informed consent was obtained from all participating nurses before the interview. The quotations used in this study were anonymized to ensure conditionality.

Consent to publication

Not applicable.

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

The authors declare that no AI and AI-assisted technologies in the writing this manuscript.

Competing interests

The authors declare no competing interests

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Table 1 and 2 are available in the Supplementary Files section.

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Exploring the posttreatment care experiences and unmet needs of breast cancer survivors: a descriptive phenomenological study

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