Unmet supportive care needs of breast cancer survivors: a systematic scoping review

This study employed a scoping review methodology to examine the range and scope of the available literature on the investigated topic, producing a rigorous synthesis and disseminating the existing evidence to date. The scoping review followed a methodological framework including the following five-stage process [27]: identifying the research question; identifying relevant studies; study selection; charting the data; and collating, summarizing, and reporting the results.

This review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines Extension for Scoping Reviews (PRISMA-ScR) [28]. The protocol was registered in PROSPERO with a registration number of CRD42022360528.

An extensive search strategy was conducted in Cochrane Library, PubMed, Embase, Web of Science, and Medline from inception through June 2023. Medical subject headings (MeSH) and text words were used to identify studies. The search strategy for ‘unmet supportive care need’ was Search #1: “needs assessment” [MeSH Terms] OR “needs assessment” [Title/Abstract] OR “assessment of healthcare needs” [Title/Abstract] OR “assessment of health care needs” [Title/ Abstract] OR “unmet needs” [Title/Abstract] OR “supportive care” [Title/Abstract] OR “need” [Title/Abstract]. The search strategy for ‘breast cancer survivor’ was Search #2: "breast neoplasms"[MeSH Terms] OR “breast neoplasms” [Title/Abstract] OR “breast cancer” [Title/Abstract] OR “breast tumor” [Title/Abstract] OR “breast oncology” [Title/Abstract]. An extended range search was carried out through ‘Search #1’ And ‘Search #2’. Furthermore, a snowballing strategy was also used with reference lists of relevant literature to locate additional studies not identified in the search strategies.

For each included study, methodological quality was independently appraised by two authors following Joanna Briggs Institute (JBI) critical appraisal checklist, which was recommended for studies reporting prevalence data and also suitable for qualitative studies [29]. It aims to assess the methodological quality of studies and to determine the extent to which a study has addressed the possibility of bias in its design, conduct, and analysis. When disagreement occurred, a consensus was reached by discussion. The JBI critical appraisal checklist for qualitative research and prevalence research could be divided into 10 and 9 measurement properties, respectively. As for mixed studies, we used both tools for each part. For the qualitative part, JBI critical appraisal checklist for qualitative research was used. For the quantitative part, JBI critical appraisal checklist for studies reporting prevalence data was applied. Each question option can be rated as “yes”, “no”, “unclear”, or “not applicable”. In each item, the percentage of each option was calculated and multiplied by 100%. The higher ‘yes’ responses on the appraisal items indicated a study of superior quality. The risk of bias scores was categorized based on “yes” rates as ≥ 80% (low), 60 to 80% (moderate), and < 60% (high).

Two independent researchers performed double-checks on literature screening and data extracting. In an initial round of screening, study authors reviewed the titles and abstracts in the consolidated dataset for relevance based on the abovementioned inclusion/exclusion criteria. In a secondary screening, articles were reviewed in their entirety and incorporated into the present review if they met the eligibility criteria. Disagreements were addressed via frequent discussions with a third independent author or between the authors. A final set of articles fitting the scope of the present review were analyzed and summarized. A pre-defined Excel form was formulated specifically for this review to facilitate the extraction of pertinent data. The columns of the characteristics of the included studies were designed and the key information relevant to the review question were recorded. Essential information was extracted from eligible articles involving title, authors, country of origin, year of publication, sample size, population demographics, research design, assessment tools, main finding, the proportion of unmet needs, and factors related to USCNs. Whereby studies measured USCNs at multiple time points, all data corresponding to the different time points were extracted. However, only baseline measures were used for data synthesis in tables and figures.

For qualitative studies, the content analytic approach was applied to narrative synthesis. For quantitative studies that reported the prevalence of USCNs, total participants, domain categories and proportion were recorded and calculated. If there was any study that reported two or more USCNs with varying proportions in a given domain, the median proportion was calculated (i.e., if a study reported multiple items in the domain of unmet psychological need, such as stress, anxiety, and depression with different proportions, the median proportion was calculated to represent the whole rate of the domain). The larger median proportion indicates a higher USCN.

The meta-analysis was performed using Review Manager Software (version 5.3). The pooled proportions (with respective 95% CIs) for each domain were calculated. To explore heterogeneity between the studies the I² statistics were used. Given the heterogeneity of estimates, a random-effects model was set. When I² was > 0.50% the statistical heterogeneity was considered substantial. We limited meta-analysis to quantitative studies that applied comprehensive (multiple domains) needs assessments: This was to ensure some comparability between pooled studies, and to avoid inflation of estimates that may arise from targeted assessment in a single domain. Tables and bar charts will be used to present the main results.

A total of 10,574 records were retrieved. After excluding 2803 duplicates, a total of 7771 studies were retrieved for titles and abstracts screening. After screening for titles and abstracts, 7471 articles were excluded and 300 papers were retrieved for full-text review. The final 77 articles were included, which consisted of 21 qualitative studies, 52 quantitative studies, and 4 mixed studies. The flow chart of the literature search is shown in Fig. 1.

The overall risk of bias is shown in Figs. 2 and 3. More than 6o% of the quantitative studies had ‘Yes’ responses to all nine items. Nearly 34.5% had ‘No’ responses to the “Condition was measured in a standard, reliable way for all participants” item and “Valid methods were used for the identification of the condition” item. A few studies had “Unclear” responses on the “Study subjects and the setting were described in detail” item (about 25.6%). Among qualitative studies, nearly 60% of articles had “No” responses to the “Is there a statement locating the researcher culturally or theoretically?” item. Nearly 29% of articles had “Unclear” responses to the “Is the influence of the researcher on the research, and vice-versa, addressed?” item, and 67% had “No” responses to the “Is there a statement locating the researcher culturally or theoretically?” item.

The final 77 articles were included, which consisted of 52 quantitative studies, 21 qualitative studies, and 4 mixed studies [30‐32]. For mixed studies, the quantitative part was assigned as the quantitative study, and qualitative part was assigned as the qualitative study. Therefore, there are 56 quantitative studies and 25 qualitative studies that were included in the final analysis. The literature characteristics were summarized in Table 1. The publication period is from 2004 to 2023. There were 33 (42.9%) studies that are published after 2018. The United States, China, Korea, Australia, and the UK published the most articles. Most quantitative studies were cross-sectional design. The most used instrument was the self-made questionnaire (19, 33.9%) [33‐50], followed by The Short-form Supportive Care Needs Survey questionnaire (SCNS-SF34) (12, 23.2%) [31, 51‐63], Supportive Care Needs Survey (5, 8.9%) (SCNS) [64‐68], Cancer Survivors Unmet Needs (3, 5.4%) (CaSUN) [19, 69, 70] and The Comprehensive Needs Assessment Tool (2, 3.6%) (CNAT) [30, 71]. In-depth, semi-structured interview was the most used approach in qualitative studies. The majority of the participants included in this review were women diagnosed with breast cancer who were in the post-treatment period. Only five studies involved objects who were undergoing treatment. There were 16 domains of USCN were finally identified, they were: physical/symptom need, psychological/emotional need, fear of cancer recurrence/ spreading, family support, medical support, social support, financial support, sexual/intimacy need, coping/survival need, daily activity need, spiritual support, information support, medical counseling, peer communication, cognitive needs, and dignity.

The quantitative synthesis evaluating the proportion of USCNs in each domain were listed in Table 2. The most proportion of USCN was focused on social support (74%), daily activity (54%), sexual/intimacy (52%), fear of cancer recurrence/ spreading (50%), and information support (45%). However, the point estimate for social support should be interpreted with enough caution for they were extracted from two studies, which were highly inconsistent in their estimates [90.9% versus 52%]). The pooled estimate was based on a small sample, and the heterogeneity was large (I² = 100%). There were amounts of studies that were excluded without the full text, which also may be one source of risk of bias.

By calculating the frequency of unmet domains (Fig. 4), information need (55) and psychological/emotional need (52) were been found to appear most frequently, followed by physical/symptom (43) medical support (35), and fear of cancer recurrence/ spreading (32).

The prominent needs with the median proportion of each domain were listed in Table 3. In physical/symptom domain, the frequently reported needs were lack of energy/tiredness [53.6% (10.6%-88.8%)], fatigue [51% (23%-87.7%)], pain [45.5% (18.5%-66%)], sleep disorder [44.9% (14%-57%)], and hot flashes [43% (23%-100%)]. In the psychosocial/emotional domain, the frequently reported needs were learning to feel in control of your situation [58.2% (47.9%-64.1%)], worrying that the results of treatment are beyond your control [54% (16.7%-71.8%)], concerns about the worries of those close to you [51.2% (43.4%-97.8%)], keep a positive outlook [49% (37%-53.8%)], and anxiety [48.7% (16%-90.6%)]. Fears of cancer spreading [57.5% (16.4%-80.3%)] and fear of cancer recurrence [47.9% (28.6%-73%)] play the predominant part in the fear of cancer recurrence/ spreading domain. Help to know how to support my family/ partner was the greatest USCN (85.2%) in family-related support. In the medical support field, the frequent USCNs were ongoing medical service [63%(37.4%-74.5%)], nutritional/diet needs [58%(28.4%-74)], wished to be able to obtain medical service in a quick and easy way when in need [50.9%(43.7%-85.5%)], reassurance by medical staff that the way you feel is normal [39.8% (30.8%-43%)], and hospital staff acknowledging, showing sensitivity to your feeling and emotion needs [38% (28.2%-48.8%)]. Help to handle the topic of cancer in social/work situations [53.5%(50.4%-90.9%)] was the highest USCN in social support. Diminished sexual activity/sexual drive was unveiled to be the prime unmet need in the interpersonal/intimacy/sexual support field. In survival/coping needs help to make new relationships (94%), dealing with my belief that nothing bad will happen again (85.2%), and dealing with the impact of cancer on my relationships (84.6%) were the prominent USCNs. Exercise need was the most mentioned in daily activity. Help with my spiritual beliefs counted 66%(40%-92%) in spiritual need. In health system/information, up to date understandable information about your cancer and treatment [62.5%(31.4%-89.5%)], being informed about cancer which is under control or diminishing (i.e., remission) [54.1%(20.8%-76.5%)], information related to hereditary of disease [52.5%(52.1%-52.9%)], and being informed about things you can do to help yourself to get well [51%(14.9%-80.9)] were the most pointed unmet needs. To have one member of the hospital staff with whom you can talk to about all aspects of your condition, treatment, and follow-up [45.5%(34.9%-87.7%)], spent time for discussing disease [45.3%(31.8%-63.2%)], and having access to professional counseling (e.g., psychologist, social worker, counselor, nurse specialist) if you, family, or friends need it [43.9%(27.7%-82%)] were mainly indicated in medical counseling. Talk to others who have been through a similar experience counted the most [40.4%(29.6%-87%)] in peers’ communication. Cognitive needs counted 37.8% [37.8%(36%-39.5%)]. Help to adjust to changes to the way I feel about my body (82.1%) was the primary issue in dignity needs.

A content analytic approach was conducted to synthesize USCNs and categorize them into different domains. The result of the synthesis was listed in Table 4. In family support, participants not only expressed the need for support from family members but also presented the need in supporting their family members, which was in agreement with the result from quantitative research. In dignity, except for an unmet need in body image, more needs regarding disease disclosure were also expressed.

It was found that USCNs were significantly associated with many factors such as age, education, symptoms, treatment, stress, anxiety, and so on (Table 5), which could be summarized into three main aspects: demographic factors, disease factors, and psychological factors. Variables significantly associated with higher USCNs across all domains (psychological, health system and information, physical and daily living, patient care and support, and sexual) were indeterminate in age, marriage, occupational status, family income, level of education, and treatment time. The determinable single relationship was discovered in rural residents, short duration, combined treatment, advanced disease stage, poor performance status, higher depression, higher stress, higher distress, higher anxiety, poor QoL, symptoms severity, more comorbidity, and physical impairment.

The results of the quality assessment of the involved research were presented in Figs. 2 and 3. The overall studies demonstrated a low to moderate risk of bias. It showed sufficient quality in terms of research method, data collection, and analysis. For quantitative research, there was an overall low risk of bias in sample size and appropriate sample frame. However, a high risk of bias was found in the detailed description of the study subjects and setting (44.2%), and how the participants were sampled (42%). The most used instrument was the self-made questionnaire and measurement heterogeneity were due to the use of unvalidated instruments. In the qualitative studies, the overall low risk of bias was found in conclusion drawing, ethical reporting, and representativeness of data. However, a high risk of bias was related to missing statements locating the researcher culturally or theoretically (79%), and the absence of stated philosophical perspective (54%).

Many instruments are available to assess USCNs in breast cancer survivors. The most used instrument was the self-made questionnaire. Substantial heterogeneity was existing in their categories, development, and quality. The Short-form Supportive Care Needs Survey questionnaire (SCNS-SF34) was widely used in evaluating the need for supportive care among cancer patients with verified validity and reliability [115, 116]. However, the standardized assessment tools that are specific to people with breast cancer and their unique USCNs are absent. In our review, only Supportive Care Needs Survey-Breast Cancer (SCNS-Breast) [15] and Cancer Survivor Profile-Breast Cancer (CSP-BC) [73] were designed specifically for breast cancer patients. Meanwhile, few instruments covered all of the measurement properties [117]. Various unmet needs evaluation tools become problematic as domains assessed in our review often include psychological aspects, patient care and support, physical aspects and daily living, health system information, and sexuality [118], resulting in spiritual, social, and concerns for family or financial needs were under revealed. Besides, under most circumstances, the methodological quality was variable. In addition, dimension classifications of USCNs differ between instruments, which complicates comparisons within the literature. An urgent demand for a more specific instrument with universal applicability for BCSs should be emphasized. Meanwhile, qualitative research had provided some points that quantitative studies did not obtain. Compared to the fixed items, qualitative research provides a more flexible approach to expressing subjective experiences. Thus, the results of qualitative studies should serve as a meaningful reference for the construction and development of more specific evaluation tools.

Through making a comprehensive analysis of literature and summarizing them, 16 domains of USCNs were finally identified: physical/symptom need, psychological/emotional need, fear of cancer recurrence/ spreading, family support, medical support, social support, financial support, sexual/intimacy need, coping/survival need, daily activity need, spiritual support, information support, medical counseling, peer communication, cognitive needs, and dignity. This classification is more detailed, specific, and diversified than most previous studies [118‐120], which could be helpful in clearly figuring out the definite unmet needs. In addition, extra USCNs were observed in concerns on caregiver burnout through qualitative studies, which indicated a need for appropriate support for their family/ caregiver/ partners. By estimating the pooled prevalence of USCNs from quantitative studies, it was found that social support (74%) counted the most proportion. However, with a small number of studies and large heterogeneity, caution must be applied as the findings might not be applicable to most breast cancer survivors. Even so, social support is still an indispensable part of BCSs. It was suggested that social support was significantly associated with resilience, posttraumatic growth [121], quality of life [122] and affective-cognitive symptoms [123]. Some social determinants such as poverty, lack of education, neighborhood disadvantage, racial discrimination, lack of social support, and social isolation were proven to significantly affect breast cancer incidence, stage at diagnosis, and survival [124]. In the present study, breast cancer patients commonly face unmet needs regarding social support in “help to handle the topic of cancer in social/work situation”, “a culture that discourages the discussion of cancer or culturally appropriate cancer resources”, “strong social support networks”, “social difficulties”. In the dignity domain, disease disclosure was also conveyed. It could be speculated that BCSs require adequate social support to in favor of their discussion and expression of the disease.

Daily activity (54%), sexual/intimacy (52%), fear of cancer recurrence/ spreading (50%), and information support (45%) were regarded as the top USCNs with high estimated prevalence. Information needs, psychological/emotional needs, physical/ symptom, medical support, and fear of cancer recurrence/spreading were been found to appear most frequently. In conclusion, fear of cancer recurrence/spreading and information need was the most reported with high pooled proportion and reporting frequency. Similarly, some previous studies have demonstrated that addressing recurrence concerns (80%) was the most commonly required [125]. Hypermutation occurs in 5% of all breast cancers with enrichment in metastatic tumors [126]. Fear of cancer recurrence (FCR) could be a powerful determinant of physical symptoms [127], psychological distress [128] and quality of life [129]. Our study demonstrated that BCSs not only faced the huge USCNs in FCR regarding “fears cancer spreading/recurrence”, but also in “dealing with the impact that having a faulty gene has had on your family”. It is not strange that the FCR is similarly reflected in the high information need related to hereditary disease. Psychological interventions might be an effective solution. A recent systematic review has recommended mindfulness and acceptance therapy-based interventions and short-term interventions to alleviate FCR [130]. Interventions to alleviate excessive worries and enhance feelings of personal control might help prevent or reduce related FCR [131].

Information needs were proved to be the most important concern among the diverse USCNs of cancer survivors [113]. Among BCSs, anxiety related to inadequate information support is common. A recent systematic review revealed that patients with breast cancer showed a huge enthusiasm in engaging intervention related to disease-focused information [132]. The prominent needs in the information domain vary among diverse patient groups. Patients with hematological malignancies were found to be mostly concerned about obtaining information about their future condition [9]. Meanwhile, more information about diet/nutrition in the form of a pamphlet or by a hospital dietician, and more information about the long-term self-management of symptoms and complications at home were discovered in patients with colon and/or rectum cancer [10]. A systematic review and synthesis of breast cancer patients' information needs developed a thorough information need model, including 3 themes, 19 categories, and 55 concepts [133]. In the present scoping review, “up to date understandable information about cancer and treatment”, “being informed about cancer which is under control or diminishing (i.e., remission)”, and “information related to hereditary disease” were the most stressed information need. Information needs regarding survivorship education, self-management, lifestyle advice and available access to healthcare sources, and choice of cancer specialists were also expressed. It inspired us to give more consideration in incorporating these unmet information needs into health education practice when delivering care for patients with breast cancer. It is believed information provision on BCSs could improve quality of life, reduce anxiety and increase intention to adhere to treatment recommendations [134]. American Society of Clinical Oncology Breast Cancer Survivorship Care Guideline has recommended that primary care clinicians should assess the information needs of breast cancer patients and its treatment, adverse effects, other health concerns, and available support services, and should provide or refer survivors to appropriate resources to meet these needs [135]. Technology-based or web-based seems to be an effective approach to provide enough information aid [136, 137]. Bootsma et al. integrated their investigation results about unmet information needs into a user-centered design to develop an informative website that targeted men with breast cancer [13].

Sexuality and intimacy represent a pillar of quality of life. The vast amount of evidence exists showing that cancer dramatically impacts a woman’s sexuality, sexual functioning, intimate relationships, and sense of self [138]. The overall prevalence of sexual dysfunction among female cancer survivors ranged from 16.7 to 67% [139]. Currently, sexual trouble is becoming more prevalent in BCSs owing to breast absence led by surgical treatment, body image, and adjuvant hormones. Low sexual desire persists throughout the timeline of BCSs, from BC diagnosis to after treatment [140]. Patients suffer from hot flashes, difficulty sleeping, loss of libido and intimacy, all resulting in significant morbidity and loss of quality of life [141]. The current finding exhibited that BCSs faced a majority of unsolved sexuality issues, particularly in diminished sexual activity/sexual drive, changes in sexual relationships and sexual feelings. A similar study conducted in gynecological cancer survivors revealed that they faced most sexual concerns on decreased sexual activity, emotional distancing from the partner, anxiety, and depression related to sexual performance [142, 143]. Among female cancer survivors, dyspareunia was the main type of sexual dysfunction reported after diagnosis [139]. Although, sexual issues are often neglected and not appropriately addressed by healthcare providers in their routine practice, which remains an unmet need with remarkable effects on general health and quality of life [144]. Effective communication between the health care professionals and cancer survivors was recommended to overcome this problem [139]. A review of the literature revealed trends utilizing psychoeducational interventions that include combined elements of cognitive and behavioral therapy with education and mindfulness training, which has positive effects on arousal, orgasm, satisfaction, overall well-being, and decreased depression [141].

Our present review showed that USCNs were significantly associated with demographic data, social determinants, disease status, quality of life, performance status, and some psychological indicators. However, causality cannot be determined due to the cross-sectional nature of the included studies. Meanwhile, due to the heterogeneity of research design, participation, and setting, a positive predictor in one article may be negative in another. Short duration since diagnosis, advanced disease stage, poor performance status, higher depression, higher stress, higher distress, anxiety, poor quality of life, more symptoms severity, existing comorbidity, and physical impairment, were identified to be significantly associated with higher USCNs of nearly all domains in most research. Compared to longer duration, a short duration since diagnosis might means more inadaptation no matter in physical or psychological or other aspects. As many studies had showed [70, 145, 146], high psychological issues, physical status, and poor quality of life were the strong predictive factors of high USCNs in BCSs. Patients who are assessed as high-risk need should be paid more attention in practice. Hence, the implementation of standardized screening tools in any phase of disease trajectory should be conducted for timely identification and intervention. In addition, prospective studies are needed to verify influencing factors that have a causal relationship with USCNs.

To the best of our knowledge, this study is the first and most comprehensive systematic scoping review regarding USCNs among breast cancer survivors. Firstly, through making a comprehensive analysis of literature and summarizing, a total of 16 domains of USCNs were finally identified. This classification is more detailed, specific, and diversified than most previous studies. Secondly, the most unmet supportive care needs were identified and the prominent needs lists of each domain were exhibited meticulously with proportion, through which the reader could obtain an in-depth understanding of USCNs among the breast cancer population. Thirdly, a comprehensive vision was provided to know potential influencing factors to USCNs for most of them were presented synthetically.

Even though, our study has some limitations. One of the limitations is the inclusion of literatures that are published only in English. In addition, there were amounts of studies without the full text. These may result in the exclusion of potentially useful research. What’s more, we failed to perform subgroup analysis because of the complexity and heterogeneity of the incorporated breast cancer population.

Research about USCNs among BCSs in more detailed classifications are needed to provide targeted supportive care, there is a need for more comparations among breast cancer patients in different subgroups. Also, an urgent demand for a more specific instrument with universal applicability for BCSs should be emphasized due to the heterogeneity of assessment tools. What’s more, we summarized the risk factors of unmet needs but failed to analyze the odds ratio (OR), hazard ratios (HRs), or relative risk (RR) of each variable. Data synthesis through meta-analysis or prospective study to determine the real factors are demanded.