Skip to main content
Download PDF

Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review

BMC Palliative Care volume 17, Article number: 96 (2018) Cite this article

Abstract

Background

This systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.

Methods

Ten electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.

Results

Fifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1–84.4%), fatigue (18–76.3%), and “being informed about benefits and side-effects of treatment” (4–66.7%). The most commonly identified  unmet needs for informal caregivers were information needs, including illness and treatment information (26–100%) and care-related information (21–100%). Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N = 8) and Problems and Needs in Palliative Care questionnaire (N = 5). The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross-sectional study design using single time-point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.

Conclusion

Both advanced cancer patients and informal caregivers reported a wide range of context-bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated  from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.

Peer Review reports

Background

According to the World Health Organization (WHO), more than 15 million people will be diagnosed with cancer by 2020 [1]. With the advances in cancer treatments, the illness trajectory and prognosis of cancer have changed, and patients diagnosed with advanced cancer can live for a relatively long period [2, 3]. However, lengthy cancer experience and anticancer treatments make patients suffer from a wide range of problems, such as physical, psychological, emotional, and practical issues [4]. Cancer-related symptoms and patients’ experiences during cancer treatment vary across different cancer stages, and patients at advanced stage commonly experience different symptoms from those with early-stage cancer [5, 6]. Such ‘chronic and uncertain’ conditions pose a challenge to not only the cancer services but also to their informal caregivers [7]. Informal caregivers commonly take care of their loved ones for a long period [8]. The long-term caregiving process is physically and psychologically challenging, particularly when taking care of patients with advanced cancer [9]. Many informal caregivers, including those who do not regard caregiving as a burden, suffer from a wide range of problems, such as sleep disturbance, anxiety, depression, and practical and financial difficulties [10, 11]. Informal caregivers are usually regarded as fellow sufferers alongside patients [12]. Unmet needs of patients can increase the level of caregiver burden [13]. In turn, caregivers’ problems are closely linked with patients’ well-being [14], and unsolved problems or unmet needs of caregivers will not only decrease their own quality of life [15] but also affect the patients’ health outcomes negatively [15]. Informal caregivers and patients with advanced cancer are considered a whole unit in fighting the illness [10].

High-quality and patient-and-family-centered care is needed to address the problems of both the advanced cancer patients and their informal caregivers, including symptom and side effect management, as well as emotional, psychosocial, and spiritual support. All these aspects of support are typically categorized under palliative care [16]. Mismatched healthcare that is inconsistent with patients and caregivers’ needs can increase healthcare expenditure and lead to harmful effects [17]. Therefore, the unmet care needs of patients and informal caregivers should be comprehensively assessed prior to designing and providing tailored palliative care services [18, 19]. Care needs are defined as “the requirement of some action or resource in care that is necessary, desirable, or useful to attain optimal well-being” (Foot, 1996, as cited in Sanson-Fisher, et al., 2000, p.227) [20]. Unmet needs assessment is designed to identify how well and how much their needs have been satisfied or not [21]. An early review [17] summarized the instruments for needs assessment; however, a majority of these instruments have been designed for general patients with cancer (e.g., Supportive Care Needs Survey, SCNS [17]). After the publication of that review, several tools that were specifically designed for advanced cancer patients (e.g., Needs Assessment of Advanced Cancer Patients, NA-ACP [22]) have been developed and used.

An early systematic review [21] published in 2009 analyzed the unmet needs of patients with advanced cancer with nine included studies. Another systematic review [7] with 23 studies reported eight unmet need domains. These two systematic reviews only focused on patients, with limited literature searches in only four databases. Meanwhile, the inclusion criteria were relatively ambiguous in the second review because studies with mixed samples (patients at different cancer stages) were included; moreover, the definition of advanced cancer was not presented [7]. Moreover, neither of the two reviews summarized and reported detailed information regarding the needs assessment tools used, which is important information to allow readers to appreciate the quality and reliability of study results. Furthermore, to date, no systematic review has been conducted to explore the unmet needs of informal caregivers of patients with advanced cancer. Therefore, the current systematic review was carried out to update evidence from previous reviews and provide a more comprehensive picture regarding the unmet needs among patients with advanced cancer and informal caregivers. An intensive literature search was performed on 10 electronic databases, and the inclusion criteria were more specific for advanced cancer diagnosis than those of the previous reviews. This current systematic review also included informal caregivers on the basis of the following concepts: fellow sufferers [12], a whole unit [10], and patient-and-family-centered care that is emphasized by the WHO [16]. Specific objectives of this review included: (1) to identify the unmet care needs and their associated factors in patients with advanced cancer and their informal caregivers, and (2) to summarize needs assessment tools that were used in the included studies.

Methods

Search strategies

With consideration of the language expertise of the review authors, English and Chinese databases were included. Ten databases, including PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), EMBase, Cochrane Central Register of Controlled Trials (CENTRAL), PsycINFO, Web of Science, Wan Fang Data, China National Knowledge Infrastructure (CNKI), Chongqing VIP (CQVIP), and Chinese Biomedical Literature Database (CBM), were searched systematically from inception of each database to December 2016. Restrictions regarding study design were not set. The used MeSH terms, key words, and free words included needs assessment, assessment of healthcare needs, unmet needs, neoplasms, advanced cancer, terminal cancer, metastatic cancer, and the forth. Manual searches were also conducted by examining the reference lists of the included studies. Three representative search strategies of this systematic review are listed in Table 1.

Table 1 Selected Search Strategies
Full size table

Study identification and data extraction

Duplications were identified and eliminated through a reference management software (NoteExpress). Titles and abstracts of the remaining studies were screened independently by two review authors (WT and TJY), and full text of potentially eligible studies were subsequently located for further screening. Studies satisfying the following inclusion criteria were included: (1) studies that included either adult (≥18 years old) patients with advanced cancerFootnote 1 or adult informal caregivers of patients with advanced cancer; (2) studies that reported data in terms of unmet care needsFootnote 2 or concerns that are directly linked to the unmet care needs of patients with advanced cancer and/or their informal caregivers, regardless of the study design; and (3) accessible full texts were published in peer-reviewed journals. Exclusion criteria were: (1) studies with mixed sample of patients with cancer at any cancer stage (except those patients with advanced cancer who were analyzed separately); (2) studies solely focusing on quality of life [21], satisfaction with healthcare services, care service utilization, or presence of symptoms/problems; (3) studies focusing on instrument development, translation, or evaluation; and (4) conference articles with only abstracts, editorial comments, guidelines, policies, or treatment recommendations. Data were extracted by two independent review authors. These data included information regarding the first author of the study, year of publication, country of origin, research setting, research design, sampling approach, sample size, need assessment methods (interview or other instruments), prevalence of unmet needs, and related factors for unmet needs. Any disagreement was settled and discussed by the two other review authors (CPM and AM).

Methodological quality appraisal

The methodological quality of included studies was assessed by two review authors (WT and TJY) independently with the Mixed Methods Appraisal Tool (MMAT) [25]. This tool is highly efficient; it takes approximately 14 min to evaluate one study [25] with robust consistency among reviewers (intraclass correlation = 0.72 [25]); MMAT is specifically designed to assess the quality of either quantitative or qualitative studies. Four different quality criteria for qualitative studies and different types of quantitative studies, including randomized control trials, quantitative nonrandomized trials, and quantitative descriptive studies, were used [25]. Each criterion was graded as 0 (unmet) or 1 (meet), and the global score of each study was calculated from 0 to 4 (0 = no criterion satisfied, 1 = satisfied one criterion, 2 = satisfied two criteria, 3 = satisfied three criteria, and 4 = satisfied all four criteria). When any disagreement occurred, the review authors conducted a group discussion to reach final agreement.

Data analysis

Content analysis [26] was used to identify the unmet need domains of patients with advanced cancer and informal caregivers across quantitative and qualitative studies. A priori content categories of patients with advanced cancer were determined on the basis of previous studies; these categories included health system and information, patient care and support, activities of daily living (ADL), physical, psychological, financial, and spiritual [7]. With regards to informal caregivers, five content categories were determined on the basis of a previous review [10]; these categories included cancer care services, informational, psychological, spiritual, and social needs. Data of the included studies were compared, combined, and clustered with respect to those domains for patients and informal caregivers. Terms, such as instrumental and personal care, were included in the ADL domain because they were frequently mentioned in several North American studies [21]. Summative content analysis was used to identify and extract new categories within content not covered by previous domains. The approach of descriptive analysis was used for the prevalence of unmet needs due to the significant heterogeneity of the included studies [27]. Variables associated with patients and informal caregivers’ needs and used instruments were analyzed through descriptive approach.

Results

In this paper, direct quotations from several included quantitative studies using commonly utilized research scales with documented psychometric properties were details of each of the used research questionnaire items. Thus, information regarding page numbers was not provided, but that for direct quotations from studies using self-designed semi-structured questionnaires and/or qualitative methods, as well as page numbers for such quotations, was provided.

Characteristics of included studies

Among the 4277 potentially eligible studies, 45 studies were included. After screening the reference lists, five other eligible studies were retrieved. Finally, 50 studies [6, 9, 28,29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46,47,48,49,50,51,52,53,54,55,56,57,58,59,60,61,62,63,64,65,66,67,68,69,70,71,72,73,74,75] (5 published in Chinese and 45 in English language) were included in this review (Fig. 1). The majority of the studies (43/50) used quantitative study designs, with 42 surveys (1 longitudinal survey [75] and 41 cross-sectional surveys) and 1 [6] pre-post intervention study (only baseline data were used in this review). The seven other studies [48, 49, 57, 62, 71,72,73] were qualitative designs with individual in-depth interviews and/or focus group. Among the 50 included studies, 33 studies investigated the unmet needs of patients with advanced cancer only, with 31 out of 33 studies from the perspective of patients, one study from the perspective of informal caregivers, and one from the perspectives of both patients and informal caregivers. Twelve studies [9, 30, 32, 35, 39, 40, 49, 51, 52, 57, 62, 64] explored the unmet needs of informal caregivers, and five other [48, 56, 59, 63, 67] studies investigated the unmet needs of patients with advanced cancer and their informal caregivers. With regards to sample sources, six studies [32, 40, 45, 46, 49, 61] reported no information regarding the recruitment setting, while in the remaining studies patients, and/or caregivers were mainly recruited from outpatient departments (n = 16), inpatient departments (n = 11), home/home-based care units (n = 10), and mixed settings (n = 7). In terms of cancer sites, 29 studies focused on patients with mixed cancer site and/or their caregivers, 11 studies focused on specific patients with cancer and/or caregivers (3 studies on prostate cancer [57, 69, 73], 5 studies on breast cancer [41, 48, 58, 60, 75], and three on lung cancer [35, 42, 71]), while 10 other studies [47, 50, 51, 53, 59, 64, 66, 68] reported no information about cancer types. The diagnostic criteria of advanced cancer were presented in 13 studies (13/50), with five studies [6, 30, 31, 60, 61] adopting the criteria of cancer with metastasis, and seven studies [9, 41, 42, 45, 58, 63, 75] using the stage III/IV criterion according to TNM staging system. With regards to geographic distribution, nine studies were conducted in the USA [38, 40, 46, 49, 52, 57, 59, 70, 74], seven were in mainland China (six of which were conducted in Shanghai) [9, 53, 63,64,65,66,67], five in Australia [6, 54, 55, 60, 68], five in the Netherlands [29,30,31, 34, 44], four in Canada [47, 50, 56, 73], three in Japan [33, 39, 41], three in Taiwan [35, 42, 62], two in the UK [69, 71], two in Denmark [45, 72], two in Hong Kong [58, 75], and one each in Italy [28], France [61], South Korea [32], Spain [37], Indonesia [36], Czech Republic [43], India [51], and Bangladesh [48]. Characteristics and main findings of all included studies are presented in Table 2.

Fig. 1
figure 1

Flow chart of study selection

Full size image

Quality of the included studies

The methodological quality of the included studies was generally robust, with 17 and 18 studies satisfying all four criteria (34%) and three of the four criteria (36%), respectively. The prominent weaknesses of 43 quantitative studies were poor sampling strategy and low response rate. The response rates of 16 studies [32, 33, 37, 39, 40, 43, 47, 52,53,54,55,56, 61, 63, 68, 74] were lower than 60%, and 14 studies [30,31,32, 38, 42, 43, 51,52,53,54, 67, 68, 70, 74] failed to report the sampling method, sampling procedure, or sample size justification. Among the seven other qualitative studies, three studies (3/7, 42.9%) [49, 62, 73] failed to interpret how findings were related to the study context, and two studies (2/7, 28.6%) [57, 73] provided no explanation on how the research process was influenced by the researchers. The overall quality score of each study is presented in the first column of Table 2.

Table 2 Characteristics and Main Findings of the Included Studies
Full size table

Descriptions of unmet needs in patients with advanced cancer

A total of 12 domains of unmet needs were identified from 34 quantitative and 4 qualitative studies. These domains included physical, ADL, psychological, health system and information, patient care and support, social, communication, financial, spiritual, autonomy, sexuality, and nutritional needs.

Unmet patient needs based on quantitative studies

Study sample sizes ranged from 40 to 977, with the average sample size being 165 and the response rate ranging from 36 to 100%. Physical needs were reported in 24 studies, and the most prominent physical unmet need was fatigue [6, 31, 33, 34, 42, 43, 45, 47, 50, 54, 56, 63]. In terms of ADL, 11 studies were included, and the most highlighted item was “not being able to do the things you used to do” [6, 33, 50, 58, 60]. Twenty-eight studies reported psychological needs, and the most common item was “emotional support” [6, 28, 29, 31, 33, 36, 41, 45, 46, 50, 70, 72, 73]. In terms of health system and information, “being informed about benefits and side-effects of treatment” was the most common one [31, 41, 42, 44, 54, 61, 63, 66, 69, 75]. With regards to patient care and support needs, two prominent unmet needs, namely, “reassurance by medical staff that the way you feel is normal” [33, 41] and “doctor acknowledges and shows sensitivity to your feelings and emotional needs” [33, 42], were identified. “Family and friends’ support” was the most common social unmet need [29, 45, 54, 55, 63, 65, 67]. Communication and financial support needs were also reported [28, 29, 31, 36, 43, 46, 54, 56, 63, 66, 55, 70]. “Meaning of death” [31, 36] was the most commonly mentioned spiritual need. “I can do less than before” [31, 34, 43] was the most prominent unmet autonomy need. Detailed unmet needs and their prevalence are presented in Table 3.

Table 3 Overall unmet needs domains and prevalence ranges of prominent items by each domain (Patients)
Full size table

Unmet patient needs extracted from qualitative studies

According to four qualitative studies [48, 71,72,73], several unmet needs that were similar to those identified in quantitative studies were extracted and categorized. For instance, patients commonly expressed “pain, fatigue or side effects of treatment, such as urinary incontinence and loss of sexual function” (p. 191–192) (physical needs) [73], “feelings of fear, hopelessness and uncertainty about the future” [48, 71] or “feelings of sadness, anger, anxiety, frustration and desperation” [48, 71, 73] (psychological and spiritual needs), “insufficient information from professional staff” (information needs) [48, 72, 73], “need more social security” (social needs) [48], and “not being regarded as a person” (p. 178) (healthcare service and information needs) [72]. However, the needs in qualitative studies were more detailed than those in quantitative studies, and the specific causes of unmet needs were identified. For example, patients elaborated that “lack of dialogue with the professionals led some patients to feel neglected and uncertain in their sense of belonging” (p. 178) [72] was the cause of “not being regarded as a person” (p. 178). Additionally, “sadness, anger, frustration and regret” resulted from “some unsolved issues about diagnosis and treatment decisions” [73]. Several unmet needs identified from the qualitative data were not identified in quantitative studies. For instance, subjects expressed “what they had achieved in their lives and what still needed to be done before death” (p. 42), “establish themselves as they ‘really’ are” (p. 41) (spiritual needs) [71], and “patients want to be proactive in problem solving” (p. 179), but they did not know how to do it (autonomy needs) [72].

Descriptions of unmet needs in informal caregivers

Seven unmet need domains were extracted on the basis of qualitative (n = 4) and quantitative (n = 13) studies.

In terms of the quantitative studies, the sample size ranged from 42 to 1662, with the mean sample size being 259. The response rates ranged from 41.4 to 95.6%. Seven domains, including information, physical, psychological, financial, cancer care service, spiritual, and social needs, were identified. Information domain included two subdomains, namely, illness and treatment and care-related information. Unmet needs regarding illness and treatment information were mentioned in nine studies, and the prevalence ranged from 26 to 100% [9, 30, 35, 39, 40, 51, 56, 67, 63]. Care-related information was reported in 10 studies with the prevalence rate in the range of 21–100% [9, 30, 35, 39, 40, 51, 59, 63, 64, 67]. With regard to cancer care services, 21–72.3% of the informal caregivers presented unmet needs in terms of quality of care [29, 30, 35], and 14–100% reported unmet needs on transitional care services [30, 32, 51, 64]. The percentages of the five other domains, including physical, psychological, financial, spiritual, and social unmet needs, were 42.8% [32], 17–78.3% [32, 35, 51, 63, 64], 17–67.3% [30, 32, 35, 51], 3.8–100% [30, 32, 52, 64], and 42.9–71.4% [51], respectively. Furthermore, “managing concerns about the cancer coming back” (78.3%) [35], “finding out about financial support and government benefits for you and/or the person with cancer” (60.9%) [35], “help to realize patient’s wishes” (100%) [64], and “lack of social life” (71.4%) [51] were reported as the most common psychological, financial, spiritual, and social needs.

According to four qualitative studies [48, 49, 57, 62], three similar unmet need domains, namely, informational, psychological, and social needs, were identified through summative content analysis. Informal caregivers commonly stated about “unmet information needs in terms of disease, treatment, side effects, care services, symptom management, nutrition, medication and nursing aids” (informational) [48, 57, 62], “feelings of sadness and loneliness, as well as a sense of abandonment, fear and helplessness” (p. 147) [48] or “insufficient listening and encouragement from other family members and professionals” [62] (psychological), and “feelings of isolation due to the lack of social activities” (social) [57]. Several specific unmet needs, including the manner of communication between professional staff and caregivers or patients, the administration and function of the healthcare system, and some practical assistance, such as cleaning the house and walking the dog [49], were also identified in qualitative studies [49].

Variables associated with the unmet needs of patients with advanced cancer

Variables associated with the unmet needs of patients with advanced cancer are summarized in Table 4. Relevant variables were categorized as patient-related variables (demographics, disease-related, physical, and psychological) and informal caregiver-related variables (age, gender, and psychological distress of informal caregivers).

Table 4 Summary of the variables associated with advanced cancer patients’ unmet needs
Full size table

In several studies, age, gender, marital status, education level, and income level were insignificantly associated with patients’ unmet needs. Although a significant relationship was reported, results were inconsistent across studies in terms of age and marital status. With regards to gender, three studies [28, 33, 63] reported that female patients indicated more physical and psychological unmet needs than those of male patients. Patients who were living alone experienced high psychological needs [28], and patients with high educational level presented considerable unmet needs in physical [42], ADL [42], information [44], community service [46], and sexuality [58] domains. Moreover, financial needs were less reported in patients with high income [46, 63].

Four studies [42, 58, 70, 75] explored the relationships between symptom distress and unmet needs, and all these studies showed that patients with symptom distress experienced more unmet needs in the psychological, physical, and ADL domains. Patients with poor ability in daily living [28] indicated more unmet needs than those of independent patients, especially in terms of information, communication, psychological, and occupational needs.

Two studies [28, 70] showed that no relationships were observed between cancer site and their unmet needs, but two other [46, 63] studies showed opposite results. Two [42, 75] out of five studies reported that no relationship was observed between cancer stage (only stages III and IV) and unmet needs, and three ones [58, 63, 70] indicated that patients with stage IV cancer presented more unmet needs than those with stage III cancer. Results were inconsistent across studies for cancer treatment, with two studies showing no relationship [42, 44] and two other studies suggesting either positive [75] or negative [58] relationship.

Patients with anxiety experienced high levels of physical, psychological, healthcare, and information, as well as ADL unmet needs, which was confirmed across several studies [33, 41, 42, 44, 58]. Patients with depression [42, 44, 58, 70] demonstrated varied results. Patients with low quality of life showed high unmet needs, especially in physical and psychological domains [41, 43]. Patients reported more unmet needs when their caregivers were male [28], young people [28], or those who suffered from psychological distress [28].

Variables associated with the unmet needs of informal caregivers

Older caregivers [30, 35] showed less unmet needs in terms of financial, social, and care-related information needs than those of younger caregivers. Caregivers in different caregiving settings reported different levels of unmet needs (home>general hospital>hospice care unit) [32, 39]. Caregivers with many physical problems experienced many unmet needs [35, 63]. Caregivers had higher levels of unmet needs when patients suffered from anxiety [35], depression [35], or low physical performance [35]. Results varied across studies in terms of gender [30], length of caregiving [9, 63], and education level of caregivers [63] (Table 5). Similarly, results were conflicting with regard to the relationships between caregivers and patients. One study [39] showed that spousal caregivers presented many information needs, and another study [63] indicated that non-spousal caregivers reported many unmet needs.

Table 5 Summary of the variables associated with informal caregivers’ unmet needs
Full size table

How their unmet needs were assessed in the included studies

For patients with advanced cancer, the most commonly used multidimensional instruments were Supportive Care Needs Survey (SCNS, n = 8) [6, 33, 41, 50, 58, 60, 61, 75], Problems and Needs in Palliative Care questionnaire (PNPC, n = 5) [31, 34, 36, 44, 47], and Needs Assessment of Advanced Cancer Patients (NA-ACP, n = 3) [38, 54, 55]. Other multidimensional instruments that were adopted included Cancer Needs Questionnaire [42], Patient Needs Assessment in Palliative Care [43], 3-Levels-of-Needs Questionnaire [45], Needs Assessment Tool: Progressive Disease–Cancer [68], Caregiver’s Perception of Patients’ Unmet Needs [59], and other instruments without reporting their psychometric properties. Among studies that focused on one specific need domain (n = 4), three explored information needs [44, 56, 69], and one investigated spiritual needs [37]. The unidimensional instruments adopted included the following: Toronto Information Needs Questionnaire [69], Advanced Cancer Information Needs [56], PNPC (only used the items of the information domain) [44], and an instrument [37] for spiritual needs assessment without specifying its psychometric properties. Overall, more than half of the quantitative studies (20/34) adopted instruments with acceptable validity and reliability.

Among the 13 quantitative studies reporting unmet needs of informal caregivers, comprehensive unmet needs (multiple domains) were explored in 10 studies [9, 30, 32, 35, 40, 51, 59, 63, 64, 67]. Different quantitative studies used different measures, which included PNPC questionnaire-caregiver form [30], Family Inventory of Needs [59], Partners and Caregivers SCNS [35], needs of family caregivers of patients with advanced cancer [9], and other self-designed instruments [32, 40, 51, 63, 64, 67]. Among the three other studies that focused on unidimensional needs assessment, two [39, 56] measured information needs, and one [52] explored spiritual needs. The scales used were Spiritual Needs Inventory [52] and two other self-designed instruments, namely, with [56] or without [39] psychometric property testing. Among all the 13 studies, only four studies used scales with documented psychometric properties.

Discussion

The included studies highlighted that both advanced cancer patients and their informal caregivers possess a wide range of unmet needs. Psychological and physical unmet needs are two areas of focus for patients with advanced cancer; this result is consistent with a previously published review [7]. Among informal caregivers who had experience in managing patients’ negative emotions, more than 30% of them reported that emotional management is the most challenging part of caregiving [76]. Three other unmet needs, namely, the need for autonomy, communication, and nutrition, were identified in this review compared with the previous review [7]. These needs may be related to the differences in cultural contexts, healthcare systems, and economic levels because several included studies in this review were conducted in eastern and developing countries. For instance, the need for autonomy is commonly culture-related [36]. Family members usually make decisions for patients in eastern cultures because family-collective decision-making is much more popular there than in other cultures [77]. This result showed the importance of developing tailored healthcare services or interventions based on context-specific unmet needs. Disease-related information needs were the most commonly reported unmet needs of informal caregivers. Considerably fewer studies reported unmet needs that are associated with the caregivers’ own well-being, as they generally focus more on the patients’ well-being than their own [30]. The prominent care needs of each domain were identified for patients with advanced cancer and informal caregivers in this review provide useful information and evidence for the development and implementation of tailored healthcare services. For example, emotional support was identified as the most commonly unmet need in the psychological domain for patients, thereby indicating that emotional distress (e.g., anxiety and depression) management should be a priority when providing mental health services. In addition, patients with advanced cancer and informal caregivers’ unmet need domains involved multiple disciplines, which indicated that healthcare services should be multidisciplinary. The value of multidisciplinary care for patients with cancer has been well recognized [78]. Support for informal caregivers is suboptimal in many instances [79]. The unmet needs of informal caregivers are often ignored and excluded from healthcare planning [80, 81].

The prevalence of unmet needs varied across the quantitative studies for both patients and caregivers. This variability may be caused by the heterogeneity of the included studies, which were conducted within different cultural contexts, healthcare systems, and economic levels that may be associated with unmet needs. High-income countries or regions generally present well-established healthcare service systems, which can facilitate the timely identification and resolution of healthcare problems (several physical symptoms particularly require high-quality professional support [28]). Different study designs, especially the diverse instruments used, for unmet needs assessment also contribute to this heterogeneity. The highlighted heterogeneity makes it difficult to gauge and pool the percentages of unmet needs by domains. SCNS was the most commonly used instrument, which was used in eight studies. However, these eight studies adopted five different variants of the same scale, with 13 [61], 33 [58], 34 [6, 33, 41], 59 [60], and 61 items [50] for each of the five versions. Different methods of need classification are also a major barrier in gauging unmet needs by domains. For instance, in SCNS, several items were classified as spiritual needs (e.g., [50]). In other studies, the same items were coded as psychological needs (e.g., [41]). Moreover, approaches in defining unmet needs were inconsistent. Among studies that utilized the SCNS, several of them regarded moderate and high levels of need as unmet needs (e.g., [41]. In other studies, low need level was calculated as an unmet need (e.g., [50]). Different reporting methods also caused heterogeneity. Several studies reported the prevalence of unmet needs by domains without specifying the percentage of items within each domain. Some studies (e.g., [33]) only listed the prevalence of the top 10 or 20 items without reporting the prevalence by domain. Thus, directly combining the prevalence of reported items within a domain may increase the risk of overestimating the actual unmet need level [21].

Although consistent results across studies showed that patients with advanced cancer with symptoms of distress and anxiety and low quality of life are more likely to report high demands of unmet needs, the conclusion must be interpreted with caution. Causality cannot be established because almost all of the included studies were cross-section in design. Other patient-related variables with inconsistent results, (e.g., gender, marital status, education level, cancer site, and depression) may be caused by cultural differences and/or methodological flaws (e.g., insufficient sample size to explore relationships between two factors) of the included studies. Hence, more longitudinal studies with rigorous study designs should be adopted. In addition, whether caregivers’ health outcomes were associated with the unmet needs of patients is still unclear because of the limited evidence that can be drawn from current studies. Therefore, more studies should focus on caregiver-related variables. Relevant studies regarding variables associated with informal caregivers’ unmet needs are limited, and no conclusion can be drawn from the current findings.

Patients with cancer at an advanced stage commonly experience fluctuating unmet needs over time due to rapid disease progression [6]. Nevertheless, little is known about how patients with advanced cancer and/or their informal caregivers’ unmet needs change across the illness trajectory. Almost all the included quantitative studies investigated unmet needs at a single time point with cross-sectional study designs. Unmet care needs assessment in the majority of the included studies is also mainly problem-oriented from a biomedical lens. Few studies considered contextual issues (sociocultural and healthcare service provisions) when assessing and interpreting results in a given context although it will be of benefit to the development and implementation of tailored interventions at a local level. Accordingly, qualitative studies are an appropriate approach because it can explore participants’ in-depth experience and subjective feelings that cannot be measured by quantitative methods; additionally, the scope can be much broader than those of quantitative methods [82, 83]. Deeper understanding of unmet needs can be extracted from the qualitative studies than from quantitative findings. However, limited studies adopted qualitative study designs, and only few studies utilized mixed methods. Care needs should be comprehensively evaluated from all stakeholders, including patients, caregivers, and healthcare providers [84]. A comprehensive understanding of both patients with advanced cancer and informal caregivers’ unmet needs can enable healthcare providers to develop evidence-based and tailored interventions [18]. Nevertheless, the majority of the included studies assessed patients’ unmet needs only, and almost all included studies examined unmet needs from the participants’ own perspective rather than from the perspectives of all relevant stakeholders. Despite that the concept of patient-and-family-centered care is advocated by the WHO [16], structured unmet needs assessment of informal caregivers is still an uncommon practice. Only a few studies assessed the unmet needs of patients and informal caregivers, and their unmet needs were assessed separately. The mechanism of integrating the data of patients and caregivers should be considered to further embody the conceptualization as a whole unit. Focused group with mixed samples, including patients and informal caregivers in the same group, may be an appropriate approach. Finally, research instruments used for needs assessment in several included studies were inappropriate. Some scales are generic ones used for supportive care needs assessment. Several items, such as “fear about the cancer spreading,” may be unsuitable for patients with advanced cancer.

A strength of this systematic review is that a large number of studies with considerable information were assimilated and analyzed through a systematic method, which can minimise biases and facilitate  reliable conclusions. This work is the first systematic review conducted by considering patients with advanced cancer and their informal caregivers as a whole unit. However, this review also presents several limitations. First, subgroup analysis in terms of contexts and economic levels was not conducted. Second, given the confounding factors and insufficient number of studies in each subgroup, meta-analysis was also not performed to compare the prevalence of each identified need domain. Third, language bias cannot be excluded because only papers that were published in English or Chinese language were included. Finally, instruments for needs assessments were only summarized from the included studies, and studies in terms of instrument development were excluded.

Conclusions

A wide range of unmet care needs existed in both advanced cancer patients and informal caregivers. Given the context-bound feature, their unmet needs should be comprehensively assessed and interpreted from the perspectives of all stakeholders within a given context by using rigorous mixed methods research and longitudinal research with prospective study designs. Assessing unmet care needs by viewing patients with advanced cancer and their informal caregivers as a whole unit is highly desirable. Associated factors of their unmet needs should not be ignored, which can provide evidence for decision-making with regards to healthcare resource allocation. The value of better examining unmet needs and their associated factors in advanced cancer patients and informal caregivers ultimately depends on how well it could inform the development and implementation of tailored healthcare service or intervention.

Notes

  1. In this review, patients with advanced cancer are defined as follows: patients with advanced, secondary, metastatic, or terminal cancer [23, 24] or patients with cancer at stage III or IV according to TNM Staging System or Dukes’ D according to Dukes’ staging system [23, 24]).

  2. In this review, when external help for patients and informal caregivers’ existing problems was inadequate, any level of need for addressing the unsolved problems was regarded as unmet care needs, which included low, moderate, and high needs.

Abbreviations

3LNQ:

3-Levels-of-Needs Questionnaire

ACIN:

Advanced Cancer Information Needs

ADL:

Activities of Daily Living

FIN:

The Family Inventory of Needs

MMAT:

Mixed Methods Appraisal Tool

NA-ACP:

Needs Assessment of Advanced Cancer Patients

NAT: PD-C:

Needs Assessment Tool: Progressive Disease-Cancer

PNAP:

Patient Needs Assessment in Palliative Care

PNPC:

Problems and Needs in Palliative Care questionnaire

PPUN:

Caregiver’s Perception of Patients’ Unmet Needs

SCNS:

Supportive Care Needs Survey

SCNS-P&C:

Partners and Caregivers supportive care needs survey

SNI:

Spiritual Needs Inventory

TINQ-BC:

Toronto Information Needs Questionnaire

References

  1. World Health Organization. Global cancer rates could increase by 50% to 15 million by 2020. Available at: http://www.who.int/mediacentre/news/releases/2003/pr27/en/. Last accessed 20 March 2017.

  2. Thorne SE, Oliffe JL, Oglov V, Gelmon K. Communication challenges for chronic metastatic cancer in an era of novel therapeutics. Qual Health Res. 2013;7(23):863–75. https://doi.org/10.1177/1049732313483926.

    Article  Google Scholar 

  3. Kim Y, Schulz R, Carver CS. Benefit finding in the cancer caregiving experience. Psychosom Med. 2007;69(3):283–91.

    Article  PubMed  Google Scholar 

  4. Gysels M, Higginson IJ, Rajasekaran M, et al. Improving supportive and palliative care for adults with cancer: research evidence. London: National Institute for Health and Clinical Excellence; 2004.

    Google Scholar 

  5. Okediji PT, Salako O, Fatiregun OO. Pattern and Predictors of Unmet Supportive Care Needs in Cancer Patients. Cureus. 2017;9(5):e1234.

  6. Waller A, Girgis A, Johnson C, et al. Improving outcomes for people with progressive cancer: interrupted time series trial of a needs assessment intervention. J Pain Symptom Manag. 2012;43(3):569–81.

    Article  Google Scholar 

  7. Moghaddam N, Coxon H, Nabarro S, et al. Unmet care needs in people living with advanced cancer: a systematic review. Support Care Cancer. 2016;24(8):3609–22.

    Article  PubMed  Google Scholar 

  8. Chen MC, Chen KM, Chu TP. Caregiver burden, health status, and learned resourcefulness of older caregivers. West J Nurs Res. 2015;37(6):767–80.

    Article  PubMed  Google Scholar 

  9. Cui J, Song LJ, Zhou LJ, et al. Needs of family caregivers of advanced cancer patients: a survey in shanghai of China. Eur J Cancer Care. 2014;23(4):562–9.

    Article  CAS  Google Scholar 

  10. Lambert SD, Harrison JD, Smith E, et al. The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Support Palliat Care. 2012;2(3):224–30.

    Article  PubMed  Google Scholar 

  11. Grunfeld E, Coyle D, Whelan T, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. Can Med Assoc J. 2004;170(12):1795–801.

    Article  Google Scholar 

  12. Proot IM, Abu-Saad HH, Ter Meulen RH, et al. The needs of terminally ill patients at home: directing one's life, health and things related to beloved others. Palliat Med. 2004;18(1):53–61.

    Article  PubMed  Google Scholar 

  13. Sharpe L, Butow P, Smith C, et al. The relationship between available support, unmet needs and caregiver burden in patients with advanced cancer and their carers. Psycho-Oncology. 2005;14(2):102–14.

    Article  PubMed  Google Scholar 

  14. Milbury K, Badr H, Fossella F, et al. Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Support Care Cancer. 2013;21(9):2371–9.

    Article  PubMed  PubMed Central  Google Scholar 

  15. Hodgkinson K, Butow P, Hunt GE, et al. Life after cancer: couples’ and partners’ psychological adjustment and supportive care needs. Support Care Cancer. 2007;15(4):405–15.

    Article  PubMed  CAS  Google Scholar 

  16. World Health Organization. WHO definition of palliative care, 2012. Available at: http://www.who.int/cancer/palliative/definition/en/. Last Accessed 20 March 2017.

  17. Wen KY, Gustafson DH. Needs assessment for cancer patients and their families. Health Qual Life Outcomes. 2004;2(1):11.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Valery PC, Powell E, Moses N, et al. Systematic review: unmet supportive care needs in people diagnosed with chronic liver disease. BMJ Open. 2015;5(4):e007451.

    Article  PubMed  PubMed Central  Google Scholar 

  19. Lam WW, Au AH, Wong JH, et al. Unmet supportive care needs: a cross-cultural comparison between Hong Kong Chinese and German Caucasian women with breast cancer. Breast Cancer Res Treat. 2011;130(2):531–41.

    Article  PubMed  Google Scholar 

  20. Sanson-Fisher R, Girgis A, Boyes A, Bonevski B, Burton L, Cook P. The unmet supportive care needs of patients with cancer. Supportive Care Review Group. Cancer. 2000;88(1):226–37.

    Article  PubMed  CAS  Google Scholar 

  21. Harrison JD, Young JM, Price MA, et al. What are the unmet supportive care needs of people with cancer? A systematic review. Support Care Cancer. 2009;17(8):1117–28.

    Article  PubMed  Google Scholar 

  22. Rainbird KJ, Perkins JJ, Sanson-Fisher RW. The needs assessment for advanced Cancer patients (NA-ACP): a measure of the perceived needs of patients with advanced, incurable cancer. A study of validity, reliability and acceptability. Psycho-Oncology. 2005;14(4):297–306.

    Article  PubMed  CAS  Google Scholar 

  23. Cancer Council. Living with advanced Cancer 2016. http://www.cancervic.org.au/about-cancer/advanced-cancer. Last accessed 30 Dec 2016.

    Google Scholar 

  24. Cancer Research UK. What is advanced bladder cancer? Available at: http://www.cancerresearchuk.org/about-cancer/type/bladder-cancer/treatment/advanced/what-is-advanced-bladder-cancer. Last accessed 30 Dec 2016.

  25. Pace R, Pluye P, Gillian B, et al. Testing the reliability and efficiency of the pilot Mixed Methods Appraisal Tool (MMAT) for systematic mixed studies review. Int J Nurs Stud. 2012;49:47–53.

    Article  PubMed  Google Scholar 

  26. Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15(9):1277–88.

    Article  PubMed  Google Scholar 

  27. Ryan R; Cochrane Consumers and Communication Review Group. ‘Cochrane Consumers and Communication Review Group: data synthesis and analysis’. http://cccrg.cochrane.org/author-resources, Last accessed 20 March 2017.

  28. Morasso G, Capelli M, Viterbori P, et al. Psychological and symptom distress in terminal cancer patients with met and unmet needs. J Pain Symptom Manag. 1999;17(6):402–9.

    Article  CAS  Google Scholar 

  29. Teunissen SC, de Haes HC, Voest EE, et al. Does age matter in palliative care? Crit Rev Oncol Hematol. 2006;60(2):152–8.

    Article  PubMed  Google Scholar 

  30. Osse BH, Vernooij-Dassen MJ, Schadé E, et al. Problems experienced by the informal caregivers of cancer patients and their needs for support. Cancer Nurs. 2006;29(5):378–88.

    Article  PubMed  Google Scholar 

  31. Osse BH, Vernooij-Dassen MJ, Schadé E, et al. The problems experienced by patients with cancer and their needs for palliative care. Support Care Cancer. 2005;13(9):722–32.

    Article  PubMed  Google Scholar 

  32. Park SM, Kim YJ, Kim S, et al. Impact of caregivers’ unmet needs for supportive care on quality of terminal cancer care delivered and caregiver’s workforce performance. Support Care Cancer. 2010;18(6):699–706.

    Article  PubMed  Google Scholar 

  33. Hasegawa T, Goto N, Matsumoto N, et al. Prevalence of unmet needs and correlated factors in advanced-stage cancer patients receiving rehabilitation. Support Care Cancer. 2016;24(11):4761–7.

    Article  PubMed  Google Scholar 

  34. Uitdehaag MJ, Verschuur EM, van Eijck CH, et al. Problems and needs in patients with incurable esophageal and Pancreaticobiliary Cancer. Gastroenterol Nurs. 2015;38(1):42–54.

    Article  PubMed  Google Scholar 

  35. Chen SC, Chiou SC, Yu CJ, et al. The unmet supportive care needs-what advanced lung cancer patients’ caregivers need and related factors. Support Care Cancer. 2016;24(7):2999–3009.

    PubMed  Google Scholar 

  36. Effendy C, Vissers K, Osse BH, et al. Comparison of problems and unmet needs of patients with advanced cancer in a European country and an Asian country. Pain Practice. 2015;15(5):433–40.

    Article  PubMed  Google Scholar 

  37. Vilalta A, Valls J, Porta J, et al. Evaluation of spiritual needs of patients with advanced cancer in a palliative care unit. J Palliat Med. 2014;17(5):592–600.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Schenker Y, Park SY, Maciasz R, et al. Do patients with advanced cancer and unmet palliative care needs have an interest in receiving palliative care services? J Palliat Med. 2014;17(6):667–72.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Fukui S. Information needs and the related variables of Japanese family caregivers of terminally ill cancer patients. Nurs Health Sci. 2004;6(1):29–36.

    Article  PubMed  Google Scholar 

  40. DuBenske LL, Wen KY, Gustafson DH, et al. Caregivers’ differing needs across key experiences of the advanced cancer disease trajectory. Palliative and Supportive Care. 2008;6(03):265–72.

    Article  PubMed  Google Scholar 

  41. Uchida M, Akechi T, Okuyama T, et al. Patients’ supportive care needs and psychological distress in advanced breast cancer patients in Japan. Jpn J Clin Oncol. 2011;41(4):530–6.

    Article  PubMed  Google Scholar 

  42. Liao YC, Liao WY, Shun SC, et al. Symptoms, psychological distress, and supportive care needs in lung cancer patients. Support Care Cancer. 2011;19(11):1743–51.

    Article  PubMed  Google Scholar 

  43. Bužgová R, Hajnová E, Sikorová L, et al. Association between unmet needs and quality of life in hospitalised cancer patients no longer receiving anti-cancer treatment. Eur J Cancer Care. 2014;23(5):685–94.

    Article  Google Scholar 

  44. Voogt E, van Leeuwen AF, Visser AP, et al. Information needs of patients with incurable cancer. Support Care Cancer. 2005;13(11):943–8.

    Article  PubMed  Google Scholar 

  45. Johnsen AT, Petersen MA, Pedersen L, et al. Do advanced cancer patients in Denmark receive the help they need? A nationally representative survey of the need related to 12 frequent symptoms/problems. Psycho-Oncology. 2013;22(8):1724–30.

    Article  PubMed  Google Scholar 

  46. Houts PS, Harvey HA, Hartz AJ, et al. Unmet needs of persons with cancer in Pennsylvania during the period of terminal care. Cancer. 1988;62(3):627–34.

    Article  PubMed  CAS  Google Scholar 

  47. Khan L, Chiang A, Barnes E, et al. Needs assessment of patients and their caregivers at the rapid response radiotherapy program. J Pain Manag. 2012;5(2):153–62.

    Google Scholar 

  48. Dehghan R, Ramakrishnan J, Uddin-Ahmed N, et al. ‘They patiently heard what we had to say… this felt different to me’: the palliative care needs and care experiences of advanced cancer patients and their families in Bangladesh. BMJ Support Palliat Care. 2012;2(2):145–9.

    Article  PubMed  Google Scholar 

  49. Mangan PA, Taylor KL, Yabroff KR, et al. Caregiving near the end of life: unmet needs and potential solutions. Palliat Support Care. 2003;1(03):247–59.

    Article  PubMed  Google Scholar 

  50. Fitch MI. Supportive care needs of patients with advanced disease undergoing radiotherapy for symptom control. Can Oncol Nurs J. 2012;22(2):84–91.

    Article  PubMed  Google Scholar 

  51. Joad AS, Mayamol TC, Chaturvedi M. What does the informal caregiver of a terminally ill cancer patient need? A study from a cancer Centre. Ind J Palliat Care. 2011;17(3):191–6.

    Article  Google Scholar 

  52. Buck HG, McMillan SC. The unmet spiritual needs of caregivers of patients with advanced cancer. J Hosp Palliat Nurs. 2008;10(2):91–9.

    Article  Google Scholar 

  53. Deng D, Deng Q, Liu X, et al. Expectation in life review: a term of spiritual needs easily understood by Chinese hospice patients. Am J Hosp Palliat Care. 2015;32(7):725–31.

    Article  PubMed  Google Scholar 

  54. Rachakonda K, George M, Shafiei M, et al. Unmet supportive Cancer care needs: an exploratory quantitative study in rural Australia. World J Oncol. 2015;6(4):387–93.

    Article  PubMed  PubMed Central  Google Scholar 

  55. Rainbird K, Perkins J, Sanson-Fisher R, et al. The needs of patients with advanced, incurable cancer. Br J Cancer. 2009;101(5):759–64.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  56. Wong RK, Franssen E, Szumacher E, et al. What do patients living with advanced cancer and their carers want to know? -a needs assessment. Support Care Cancer. 2002;10(5):408–15.

    Article  PubMed  Google Scholar 

  57. Carter N, Bryant-Lukosius D, DiCenso A, et al. The supportive care needs of family members of men with advanced prostate cancer. Canadian oncology nursing journal/revue canadienne de soins infirmiers en. Oncologie. 2010;20(4):166–70.

    Google Scholar 

  58. Au A, Lam W, Tsang J, et al. Supportive care needs in Hong Kong Chinese women confronting advanced breast cancer. Psycho-Oncology. 2013;22(5):1144–51.

    Article  PubMed  Google Scholar 

  59. Hwang SS, Chang VT, Alejandro Y, et al. Caregiver unmet needs, burden, and satisfaction in symptomatic advanced cancer patients at a veterans affairs (VA) medical center. Palliat Support Care. 2003;1(04):319–29.

    Article  PubMed  Google Scholar 

  60. Aranda S, Schofield P, Weih L, et al. Mapping the quality of life and unmet needs of urban women with metastatic breast cancer. Eur J Cancer Care. 2005;14(3):211–22.

    Article  CAS  Google Scholar 

  61. Lelorain S, Brédart A, Dolbeault S, et al. How does a physician’s accurate understanding of a cancer patient’s unmet needs contribute to patient perception of physician empathy? Patient Educ Couns. 2015;98(6):734–41.

    Article  PubMed  Google Scholar 

  62. Lee HT, Melia KM, Yao CA, et al. Providing hospice home care to the terminally ill elderly people with cancer in Taiwan: family experiences and needs. Am J Hosp Palliat Med. 2014;31(6):628–35.

    Article  Google Scholar 

  63. Liu Y. The status of the needs and service utilization wills of advanced cancer patients and their informal caregivers and service contents of some community health service centers delivery in Shanghai. 2008. The Second Military Medical University, Master Thesis. (in Chinese).

  64. Chen HY, Ju BB, Lu BQ, et al. Investigation and intervention of nursing demand and emotional state of family members of patients with advanced neoplasm. Shanghai Nurs. 2008;8(6):18–20.

    Google Scholar 

  65. Gu WJ, Shi YX, Yuan W, et al., Health service needs of terminal inpatients with advanced malignant tumor in community hospice care pilot settings in shanghai. Chinese General Practice 2015., 18 (22):2655–2661. (in Chinese).

  66. Huang J, Xu Y, Peng P, et al. A survey of advanced cancer patients’ community health service needs. Nurs J Chinese People’s Liberation. 2008;25(4A):33–5.

    Google Scholar 

  67. Miu J, Cao WQ, Wang XY, et al. Investigation on community care needs of patients with cancer and their family members in a community in shanghai. Chin Nurs Res. 2016;30(7A):2386–90.

    Google Scholar 

  68. Waller A, Girgis A, Johnson C, et al. Implications of a needs assessment intervention for people with progressive cancer: impact on clinical assessment, response and service utilisation. Psycho-Oncology. 2012;21(5):550–7.

    Article  PubMed  Google Scholar 

  69. Templeton H, Coates V. Informational needs of men with prostate cancer on hormonal manipulation therapy. Patient Educ Couns. 2003;49(3):243–56.

    Article  PubMed  Google Scholar 

  70. Hwang SS, Chang VT, Cogswell J, et al. Study of unmet needs in symptomatic veterans with advanced cancer: incidence, independent predictors and unmet needs outcome model. J Pain Symptom Manag. 2004;28(5):421–32.

    Article  Google Scholar 

  71. Murray SA, Kendall M, Boyd K, et al. Exploring the spiritual needs of people dying of lung cancer or heart failure: a prospective qualitative interview study of patients and their carers. Palliat Med. 2004;18(1):39–45.

    Article  PubMed  Google Scholar 

  72. Soelver L, Rydahl-Hansen S, Oestergaard B, et al. Identifying factors significant to continuity in basic palliative hospital care—from the perspective of patients with advanced cancer. J Psychosoc Oncol. 2014;32(2):167–88.

    Article  PubMed  Google Scholar 

  73. Carter N, Bryant-Lukosius D, DiCenso A, et al. The supportive care needs of men with advanced prostate cancer. Oncol Nurs Forum. 2011;38(2):189–98.

    Article  PubMed  Google Scholar 

  74. Christ G, Siegel K. Monitoring quality-of-life needs of cancer patients. Cancer. 1990;65:760–5.

    Article  PubMed  CAS  Google Scholar 

  75. Lam WW, Tsang J, Yeo W, et al. The evolution of supportive care needs trajectories in women with advanced breast cancer during the 12 months following diagnosis. Support Care Cancer. 2014;22(3):635–44.

    Article  PubMed  Google Scholar 

  76. Deshields TL, Rihanek A, Potter P, et al. Psychological aspects of caregiving: perception of cancer patients and family caregivers. Support Care Cancer. 2012;20:349–56.

    Article  PubMed  Google Scholar 

  77. Gu X, Chen M, Liu M, et al. End-of-life decision-making of terminally ill cancer patients in a tertiary cancer center in shanghai, China. Support Care Cancer. 2016;24(5):2209–15.

    Article  PubMed  Google Scholar 

  78. Health Care Guideline- Palliative Care for Adults (Fifth Edition, November 2013). Available at: https://www.icsi.org/guidelines_more/catalog_guidelines_and_more/catalog_guidelines/catalog_palliative_care_guidelines/palliative_care/. Last accessed 1 Nov2016.

  79. Hudson P, Remedios C, Zordan R, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012;15(6):696–702.

    Article  PubMed  PubMed Central  Google Scholar 

  80. Halkett GK, Lobb EA, Miller L, et al. Protocol for the care-IS trial: a randomised controlled trial of a supportive educational intervention for carers of patients with high-grade glioma (HGG). BMJ Open. 2015;5(10):e009477.

    Article  PubMed  PubMed Central  Google Scholar 

  81. Sealey M, Breen LJ, O’Connor M, et al. A scoping review of bereavement risk assessment measures: implications for palliative care. Palliat Med. 2015;29(7):577–89.

    Article  PubMed  Google Scholar 

  82. Grypdonck MH. Qualitative health research in the era of evidence-based practice. Qual Health Res. 2006;16(10):1371–85.

    Article  PubMed  Google Scholar 

  83. Britten N, Campbell R, Pope C, et al. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy. 2002;7(4):209–15.

    Article  PubMed  Google Scholar 

  84. Field D, Clark D. Researching palliative care; 2001. p. 146–51.

    Google Scholar 

Download references

Availability of data and materials

Data that used for analysis in this review were all extracted from the original published studies (included studies) and were presented in Table 1 (Characteristics of the included studies).

Author information

Authors and Affiliations

  1. School of Nursing, The Hong Kong Polytechnic University, Hung Hom, Hong Kong

    Tao Wang, Alex Molassiotis, Betty Pui Man Chung & Jing-Yu Tan

  2. College of Nursing and Midwifery, Charles Darwin University, Darwin, Australia

    Jing-Yu Tan

Authors
  1. Tao Wang
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Alex Molassiotis
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Betty Pui Man Chung
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Jing-Yu Tan
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

Study conception and design, literature search, data extraction and checking, data synthesis and interpretation, and manuscript drafting and revision: TW; Study conception and design, and manuscript revision: AM and BPMC. Data extraction and checking, and manuscript revision: JYT. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Alex Molassiotis.

Ethics declarations

Ethics approval and consent to participate

Not applicable

Consent for publication

Not applicable

Competing interests

The authors declare that there is no any conflict of interests regarding the publication of this paper.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Wang, T., Molassiotis, A., Chung, B.P.M. et al. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat Care 17, 96 (2018). https://doi.org/10.1186/s12904-018-0346-9

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1186/s12904-018-0346-9

Keywords

BMC Palliative Care

ISSN: 1472-684X

Contact us