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Abstract
Objectives To achieve optimal survival care outcomes, all healthcare services must be tailored to patients’ specific needs, preferences and concerns throughout the survival period. This study aimed to identify supportive care needs from the point of view of breast cancer survivors.
Methods Following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for reporting systematic reviews, a comprehensive search of PubMed, Web of Science and Scopus was performed. The inclusion criteria were studies published from inception to the end of January 2022, covering all stages of breast cancer. The exclusion criteria were mixed-type studies relating to cancer, such as case reports, commentaries, editorials and systematic reviews, as well as studies that assessed patients’ needs during cancer treatment. Two quality assessment tools were used for the qualitative and quantitative studies.
Results Of the 13 095 records retrieved, 40 studies, including 20 qualitative and 20 quantitative studies, were retained for this review. Survivors’ supportive care needs were classified into 10 dimensions and 40 subdimensions. The most frequently mentioned supportive care needs of survivors were psychological/emotional needs (N=32), health system/informational needs (N=30), physical and daily activities (N=19), and interpersonal/intimacy needs (N=19).
Conclusions This systematic review highlights several essential needs for breast cancer survivors. Supportive programmes should be designed in order to take into consideration all aspects of these needs, particularly psychological, emotional and informational needs.
- Breast
- Survivorship
- Supportive care
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information. More information is available on request.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Several original studies have investigated the different dimensions of the supportive care needs of breast cancer survivors. Each of these studies achieved different results. However, to date, no systematic study has combined these results in order to achieve a general and reliable conclusion.
WHAT THIS STUDY ADDS
In this systematic study, we identified the most important supportive care needs of breast cancer survivors through an extensive search with no time limit. This study classified the needs of breast cancer survivors into main dimensions (10) and subdimensions (40). They are provided with supporting details.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Survivorship care programmes for breast cancer survivors could be designed based on the supportive care needs derived from this study. Researchers could test the implementation of survivorship care programmes based on these needs in clinical trials. Policymakers could also use these results to prevent secondary cancer and improve survivors’ quality of life.
Introduction
In 2020, there were estimated to be 19.3 million new cancer cases worldwide and almost 10 million cancer-related deaths. Female breast cancer was the most commonly diagnosed cancer, with 2.3 million new cases (11.7%), surpassing lung cancer.1 Thanks to early diagnosis and improved treatment, the survival rate in patients with breast cancer has improved.2 Almost 88% of patients with breast cancer survive for 5 years or more.3 According to the National Institutes of Health, ‘an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life’.4 Increased survival rates in patients with breast cancer have led to a growth in the number of survivors with disease-related problems that require ongoing post-treatment care.5 The growing population of breast cancer survivors (BCSs) is a challenge for the healthcare providers and policymakers who are expected to meet the multifaceted needs of this group of patients.6
Needs arise when a person does not have the capacity to deal with their problems and requires external resources to achieve well-being.7 Ten years after a breast cancer diagnosis, most patients continue to have many medical, psychological and social care needs, and should be helped to deal with these problems8 9; they will have many unmet needs of all kinds after completing breast cancer treatment.10 These problems can include fatigue, pain, cognitive impairment, osteoporosis, traumatic stress, fear of recurrence and sexual problems.11–13 The Institute of Medicine has listed five main areas in survivorship care: (1) monitoring the recurrence of cancer or new cancers; (2) managing the remaining symptoms after the end of treatment; (3) risk assessment for preventing late effects from treatment; (4) assessment of the psychosocial needs and providing appropriate support; and (5) advising patients on lifestyle modifications.14 Supportive care is defined as rendering essential services that satisfy the physical, psychological, social, informational and spiritual needs of patients with cancer throughout the entire illness trajectory.15 Planning supportive care services for patients with cancer starts with an identification of their needs.16
The supportive care framework for cancer care was first introduced in 1994.17 The framework provides a tool for cancer care professionals and programme managers, allowing them to design services based on the type of assistance that patients with cancer may need.18 Based on the current literature, individual supportive care needs are classified into 11 aspects, including psychosocial/emotional, physical, health system/information, family-related, social, interpersonal/intimacy, practical, daily living activity, spiritual/existential, patient–health professional communication and cognitive needs.19 The current trend in modern medicine is changing from a disease-based model to a patient-centred model in which patients are active and their preferences and care needs are considered.20 The important factor in providing quality care is identifying and satisfying the needs of this group of patients.6 20 In order to achieve optimal survival care outcomes, all healthcare services must be tailored to the patient’s needs, preferences and concerns.21 Therefore, the present study aimed to identify the supportive care needs of BCSs.
Methods
This systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.22
Eligibility criteria
Based on the PICOS (Population, Intervention, Comparison, Outcomes and Study) framework, the inclusion criteria were as follows: studies on BCSs according to the definition of the National Cancer Institute’s Office of Cancer Survivorship, irrespective of disease stage, time since diagnosis or treatment modality (P); studies without intervention or control groups (I, C); studies reporting the needs of BCSs (O); and various types of qualitative and quantitative studies published in English language from inception until the end of January 2022 (S). The exclusion criteria were mixed-type studies related to cancer, case reports, commentaries, editorials, systematic review studies and studies that assessed patients’ needs during cancer treatment.
Search strategy and study selection
Three electronic databases—Medline (using PubMed), ISI Web of Science and Scopus—were searched from inception until the end of January 2022. Keywords were selected based on their relation to “breast cancer survivors” and “needs”, in three steps. The first keyword search was performed using the Medical Subject Heading and Emtree. Additional keywords were then instigated using the titles and abstracts of the related articles. Finally, a list of keywords was created based on the opinions of cancer research experts. A manual search was also performed, using the keywords “breast cancer survivors” and “needs”, in the Google and Google Scholar search engines. The search strategy focused on three concepts (supportive care needs, breast cancer survivors and needs assessment). Additionally, a combination of search terms and phrases relating to BCSs and supportive care needs such as “breast cancer survivors”, “cancer survivors”, “healthcare needs”, “educational needs”, “needs assessment” and “self-care needs” was also included in the search strategy. The search queries are presented in table 1.
Search strategy: 27 January 2022
Data extraction
Articles obtained from manual and systematic searches were entered into EndNote (Thomson Reuters, EndNote V.20.2.1.Build, Toronto, Ontario, Canada) and duplicate articles were excluded. Two independent reviewers screened the titles and abstracts of the articles and selected the potentially relevant studies. The full text of the articles was then studied and the final articles were selected based on the inclusion and exclusion criteria. All steps were performed by the two independent reviewers, with any disagreements resolved through discussion and a third reviewer. The following data were extracted from a predefined form of articles: author, purpose, context, setting, country, sample size, sampling, response rate, design, data collection, demographic characteristics, cancer stage, time since diagnosis, treatment and outcome.
Quality assessment
Quality assessment of the studies was conducted using two quality appraisal tools: quantitative and qualitative. This method had previously been used in a similar systematic review.19 The quantitative appraisal tool consisted of 17 items, evaluated a range of designs including observational study, randomised controlled trial (RCT), non-RCT, cohort and case study, and classified them into the three levels: ‘good’ (2), ‘fair’ (1) and ‘poor’ (0). The qualitative appraisal tool, meanwhile, had 15 items and 3 levels from 0 to 2.23 All steps of the quality assessment were performed by two independent reviewers (see tables 2 and 3).
Quality appraisal of primary studies
Quality appraisal of primary studies
Analysis and synthesis of the results
In this study, the dimensions of the supportive care needs of BCSs were based on the supportive care needs framework proposed by Fitch.18 The review used narrative synthesis and tabulation of primary research studies to generate broad findings and conclusions. The narrative synthesis undertook the following steps: data reduction (subgroup classification based on the levels of evidence and the review questions), narrative data comparison (the iterative process of making comparisons and identifying relationships), and conclusion and verification (checking primary data sources for accuracy and confirmability).24
Results
Search results
The database searches retrieved 13 095 original studies, of which 8845 remained after deduplication (figure 1). After reviewing titles and abstracts, 243 studies were included in the full-text review. Based on the predefined eligibility criteria, 34 studies from the databases and a further 6 studies from manual searching were included in the review. The PRISMA flow chart in figure 1 illustrates the selection process.
Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram.
Characteristics of the included studies
Among the 40 studies selected for inclusion, 20 qualitative studies and 20 quantitative studies were included. The publication period ranged from inception until the end of January 2022. Fifteen studies (37.5%) were conducted in the USA and four (10%) in Korea. The sources of data were tumour registries or hospital databases in 12 (52.2%) of the included studies and self-reported surveys or interviews in 9 (39.1%) of the studies, while 2 studies (8.7%) used both sources (online supplemental table 1). Methodological quality assessment of the studies was performed in parallel with data extraction.
Supplemental material
Evidence of unmet supportive care needs by domain
Psychological/emotional needs
Thirty-two studies described the psychological and emotional needs of BCSs.3 6 12 13 20 21 25–50 The most frequently reported psychological and emotional needs were depression, anxiety and stress (N=15),3 21 25 28 32 36 41–45 47–49 as well as fears about cancer spread and recurrence (N=13).6 21 26 32 35 37 41 42 44 45 47–49 In a study conducted by Bu et al, fear of recurrence was identified as the most important need in BCSs; it was reported by 69% of patients.42 Furthermore, in a study conducted by So et al, fear of cancer spreading was identified as the most important unmet psychological need.45 Fear of disclosure,11 13 20 25 26 33 36 43 feelings about death and dying,6 35 44 45 and uncertainty about the future6 35 41 45 were the next highest-ranked needs. Other psychological and emotional needs included stigma associated with cancer,3 13 frustration,28 low mood and isolated needs,28 and feelings of sadness.45 In a study by Autade and Chauhan, all BCSs reported emotional needs, including worry, anxiety, depression, anger, frustration, low mood and isolation.28
Health system/information needs
Health system/information needs were reported by 30 studies.2 6 11 12 20 21 25–27 30–35 37–39 41–47 51–55 Receiving easy-to-understand and accurate information about the side effects of medication and treatment was the most common information need reported by BCSs (N=13).21 26 27 32 35 38 41 45 46 52–54 In a study by Pembroke et al, almost half of the participants reported unmet needs associated with treatment-related side effects.26 Eight studies also reported information needs relating to improved self-control of the situation, lifestyle advice and self-management.6 12 21 27 29 35 45 54 There was a need to obtain information about self-management skills associated with exercise, proper diet and regular breast self-examination. Participants were keen to achieve and maintain well-being and a healthy lifestyle that would prevent breast cancer recurrence.6 The study conducted by Cappiello et al showed that almost all participants wanted more detailed information. A number of women suggested that information should be provided during a separate visit, not at the end of treatment.36 On the other hand, there were some needs that were rarely reported by survivors: the need for a linguistically and culturally appropriate programme3; providing information to family and partners47; information on a case-by-case basis52 and complementary therapy.52 Other needs are listed in table 4.
Supportive care needs of breast cancer survivors
Physical and daily living needs
Nineteen studies described the physical needs of BCSs. The most common symptoms reported were fatigue (N=8)25 28 33 36 42–45 and pain (N=7).25 28 33 36 38 42 45 The largest sample population (n=1210) reported fatigue in 40.7% of the subjects and pain in 37.2%.42 In a qualitative study conducted by Cappiello et al, patients reported fatigue as a persistent physical symptom.36 Other physical needs are listed in table 4. The least common physical needs mentioned in the studies included hot flashes,25 28 36 shortness of breath,28 32 change in appetite or eating pattern,28 36 and digestive problems.28 32 Survivors also reported a lack of energy and tiredness relating to daily activities; they needed help with housekeeping, childcare, bathing, dressing and cooking.11 28 32 44 45
Interpersonal needs/intimacy concerns
Nineteen studies reported BCSs’ concerns about interpersonal/intimacy needs,13 25 26 28–30 32 33 35 36 39 41–45 48 49 51 including body image, femininity, altered physical appearance and self-confidence, all of which affected interpersonal/intimate relationships.13 25 26 28–30 32 39 41–45 48 49 51 Needs relating to sexual function26 28 30 33 35 36 44 45 and relationship with a partner30 32 44 were also reported in a number of studies. In a study conducted by Kim et al, survivors stated that self-confidence played an essential role in adjusting to different changes following cancer treatment.29 A study by Cappiello et al showed that changes in sexuality and sexual function were usually reported in the post-treatment phase and were mostly attributed to decreased libido.36
Social needs
Eighteen studies reported social needs among BCSs.3 13 28 30–33 38 43 44 47–49 53 The top-ranking social need was support from friends and social networks/support groups.31 33 38 43 44 49 53 The next highest ranked was the need to return to work or re-employment.3 13 30 32 42 The other social needs of BCSs are listed in table 4. Galván et al stated that their participants who had received good social support reported less psychological distress and better adjustment to breast cancer.39 Fassier et al found that women had different motivations for returning to work after breast cancer. This challenge relates to social relationships, financial issues, perceived utility in society and the meaning of life.50 Despite the fact that survivors had problems communicating with others,28 31 49 they were willing to communicate with their partners, healthcare providers and other people with cancer.13 31 47 48
Family-related needs
Thirteen articles reported that survivors needed support from their family.31 33 38 43 44 49 53 Wilson et al reported that support from friends and family was a positive coping strategy.31 Additionally, in a study by Lee et al, family members, including adult children and spouses, were the main source of support for all participants.3 On the other hand, a number of survivors reported that they did not want to be a burden to their family.3 13 44 49 They preferred to be the family caretaker rather than a care receiver.44 In two studies, survivors stated that family members, primarily the male partner, emerged as the primary source of emotional support following treatment.39 53 Other needs reported by BCSs included help with difficulties that arose in family relationships following cancer diagnosis32 and concerns relating to managing family and everyday living.36
Practical needs
Thirteen articles reported practical needs for BCSs, including financial distress, healthcare costs, life insurance, and dealing with problems at work or in education.11 28 31 32 38 40–42 44–46 48 49 In a study by Autade and Chauhan, the majority of participants reported problems at work or in education. Thirty-three per cent said they had problems with making plans for activities, 19% said that they sometimes had problems with dressing and bathing, and 53% reported having trouble preparing food. All the BCSs reported problems with finance.28
Spiritual/existential needs
Overall, there were 12 studies that covered the spiritual needs of BCSs.3 11 25 28 38 40 44 48 49 Religion and/or spirituality was an important source of emotional support for them.40 43 44 Some survivors reported experiencing frustration and loss of meaning and purpose in life28 38; they needed strong faith and a sincere relationship with God.38 44 In a study by Autade and Chauhan, loss of hope or other spiritual concerns were expressed by 50% of BCS respondents. About 5.8% of respondents felt that they had lost their sense31 of meaning or purpose in life.28
Patient–clinician communication needs
Five studies discussed patient–clinician communication needs.2 29 31 41 51 52 Patients were generally satisfied with the decision-making and surveillance of the organisations.2 Participants reported a high level of satisfaction with the quality of medical care and the care coordination.41 In a study by Miyashita et al, 68% of participants were satisfied with their strategies for communicating with medical staff.52 There was some discord in relation to fertility preservation options and cancer treatment decision-making with providers.51 Survivors stated that they had many unanswered questions and were not receiving a response from healthcare providers. In their view, both survivors and healthcare providers needed more effective communication skills.29 Participants reported poor interactions with healthcare providers, which led to them feeling ignored.31
Cognitive needs
Four articles reported the cognitive needs of BCSs.25 28 36 42 In a study by Autade and Chauhan, 53% of BCSs stated that they had trouble remembering things.28 Cappiello et al stated that difficulties in remembering things and concentrating were reported by 60%–80% of participants and persisted during the first year of treatment.36
Discussion
This systematic review aimed to determine a comprehensive set of domains for the supportive care needs of BCSs. Therefore, we decided not to limit the research to studies with the title and/or purpose of supportive care needs, as we wanted to analyse all studies that evaluated the needs of BCSs. Owing to the different tools and qualitative methods used for needs assessment, it was relatively difficult to compare the studies. We integrated the studies’ results through a deductive approach based on classes of supportive care needs. This review analysed 40 studies that evaluated the supportive care needs of BCSs. It showed that BCSs have a wide range of supportive care needs; this extracted evidence was categorised into 10 dimensions including psychological, informational, physical, social, spiritual, interpersonal, family-related, practical, patient–clinician communication and cognitive needs.
The most prevalent needs were mainly psychological/emotional needs, followed by health system/information needs. There have been no similar studies on the supportive care needs of BCSs. However, similar to this study, a systematic review by Fiszer et al covered the supportive care needs of women with breast cancer. The most important supportive care needs for these patients were information and psychological needs.15 56
In the psychological/emotional domain, three of the most common supportive care needs were ‘needing help with depression, anxiety and stress’, ‘needing help to cope with fears about cancer spread and recurrence’, and ‘fear of disclosure’.47 57 A study by Ahmadi Gharaei et al in Iran showed that the prevalence of depression in patients with breast cancer was 46.8%, which is higher than the prevalence of postpartum depression, depression among infertile couples and depression among Iranian adolescents.58 A study by Saeedi et al indicated that high levels of anxiety and stress in patients with breast cancer were considered to be the first and most important psychological consequences of breast cancer.59 These symptoms of depression and anxiety may be related to some stressors such as breast cancer perception, long-term treatment-related side effects and fear of cancer recurrence.60 Fear of cancer recurrence is recognised as one of the most common—and destructive—problems in cancer survivors; in some studies, it has been reported by up to 70% of survivors.61–64 Since fear of cancer recurrence is a common concern in cancer survivors and can negatively affect health behaviour and quality of life, it should be considered an important issue for intervention.61
In the health system/informational domain, three of the most common supportive care needs were ‘needing an easy and accurate explanation about side effects and treatment sequelae’, ‘needing information about tests and treatments’, and ‘needing up-to-date and ongoing information’. These results are consistent with those of other studies that have measured the information needs of patients with breast cancer.65 In the survivorship stage, patients focused on information about side effects and management of side effects. In addition, they wanted information that would help prevent recurrence during this stage.65 Information needs in patients with breast cancer change with time, and patients at different stages of the disease have different information needs. Generally, information on the chances of cure is more important to women at diagnosis and information about self-care is more significant to move further away from diagnosis.66
Within the physical and daily living needs, three of the most common supportive care needs were ‘fatigue’, ‘pain’ and ‘needing someone to help with usual activities’. Fatigue and pain are common physical symptoms in patients with breast cancer.67 Bu et al (N=1210) reported that 41.8% of patients had symptoms of fatigue and 37.2% had pain.42 A systematic review indicated that in most studies, about 30% of patients reported fatigue after completing treatment; this figure was higher in obese younger women with diabetes.68 In summary, as treatment following diagnosis progresses, fatigue decreases and most survivors recover; however, fatigue is complex and persistent among a small percentage of patients.68 Given the growing population of survivors, this is a worrying problem and requires appropriate interventions in the field. Chronic pain is one of the most common symptoms experienced by cancer survivors. Forsythe et al reported that almost 30% of BCSs suffer above-average pain 10 years after the end of treatment.69 Leysen et al, in a systematic study, identified several risk factors for chronic pain in BCSs, including body mass index >30, lymphoedema, axillary lymph node dissection, chemotherapy and radiotherapy.70 Most studies have reported that the most common physical symptom in women is breast/arm pain.71–73 Lymphoedema monitoring can be performed using basic circumferential measurements of the limb girth (www.armvolume.com). In general, ongoing support should be provided in order to manage the symptoms of fatigue and pain in these patients.74
Another significant set of needs for BCSs is interpersonal/intimacy needs; these include ‘adjusting to concerns relating to body image’, ‘sexual function’ and ‘relationship with partner’. Paterson et al, in a systematic review, stated that body image disturbance is an important issue of survival after breast cancer treatment, and that this issue is often associated with other types of distressing psychological, physical and interpersonal concerns.75 In another study, various interventions were proposed to improve body image, including an exercise intervention programme, a sexual life reframing programme, and a combination of couple and sex therapy interventions.76–79 The majority of BCSs experience sexual problems during their survival, often with vaginal and vulvar dryness. There is significant evidence that encourages the regular use of vaginal moisturisers to improve dryness, dyspareunia and sexual satisfaction. Educational and counselling interventions, especially those targeting sexual dysfunction, can improve various aspects of sexual health.80
Conclusion
This systematic review has highlighted several essential needs for BCSs. A comprehensive knowledge of the needs and experiences of survivors during the survival period is essential for providing them with patient-centred and family-centred care. In this study, psychosocial/emotional needs were at the top, followed by informational and physical needs. These results are consistent with those of other studies on supportive care for chronic diseases. Supportive programmes that provide support for BCSs should consider all physical, psychological, informational, social and spiritual aspects. Future studies are needed in order to determine how to tailor supportive care according to patients’ needs and thus improve their quality of life.
Data availability statement
All data relevant to the study are included in the article or uploaded as online supplemental information. More information is available on request.
Ethics statements
Patient consent for publication
Ethics approval
Not applicable.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors All authors planned the search strategy. RK and SZA performed searches, extracted the data into tables and EndNote, and assessed the risk of bias, which was checked by MI. RK wrote the original draft. MI, PA and FHN critically revised the work. All authors contributed to the review and editing of the manuscript. MI accepts responsibility for the finished work and conduct of the study, had access to the data, and controlled the decision to publish.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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