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The Supportive Care Needs of Cancer Patients: a Systematic Review

The Supportive Care Needs of Cancer Patients: a Systematic Review Cancer, and the complex nature of treatment, has a profound impact on lives of patients and their families. Subsequently, cancer patients have a wide range of needs. This study aims to identify and synthesise cancer patients’ views about areas where they need support throughout their care. A systematic search of the literature from PsycInfo, Embase and Medline databases was conducted, and a narrative. Synthesis of results was carried out using the Corbin & Strauss “3linesof work” framework. For each line of work, a group of key common needs were identified. For illness-work, the key needs idenitified were; understanding their illness and treatment options, knowing what to expect, communication with healthcare professionals, and staying well. In regards to everyday work, patients wanted to maintain a sense of normalcy and look after their loved ones. For biographical work, patients commonly struggled with the emotion impact of illness and a lack of control over their lives. Spiritual, sexual and financial problems were less universal. For some types of support, demographic factors influenced the level of need reported. While all patients are unique, there are a clear set of issues that are common to a majority of cancer journeys. To improve care, these needs should be prioritised by healthcare practitioners. . . . Keywords Supportive care Cancer Patient needs Holistic Introduction cancer. It is therefore important that the support offered to cancer patients improves to meet this growing demand. Rationale Cancer care pathways are often spread across multiple facili- ties and delivered by healthcare practitioners (HCP), which make Over 42 million people worldwide are currently living with it challenging for a patient’s wider support needs to be met. This cancer [1]. A cancer diagnosis often results in biographical has an impact on patient wellbeing [6] and survival outcomes [7, disruption [2] and distress [3], sometimes lasting years post- 8]. Many studies focus on the needs of specific patient groups, treatment [4, 5]. As survival rates continue to increase, more defined by diagnosis, treatment or demographics, but there is no individuals will have to live with the long-term implications of broad consensus on how common or dissimilar patients’ support- ive care needs are across types of cancer and populations. The aim of this study was to synthesise existing data on the support * Elizabeth Murray needs of cancer patients across populations. Identifying the com- Elizabeth.murray@ucl.ac.uk mon underlying needs of cancer patients, as well as needs that are specific to a patient’s diagnosis or background, will help HCPs Madeleine Evans Webb Madeleine.webb.17@ucl.ac.uk provide comprehensive support more efficiently. Zane William Younger zanewyounger@gmail.com Henry Goodfellow Methods Henry.goodfellow@nhs.net Jamie Ross Eligibility Criteria Jamie.Ross@ucl.ac.uk Population UCL Research Department of Epidemiology & Public Health, 1-19 Torrington Place, London WC1E 6BT, UK Inclusion criteria: Any patient undergoing treatment for any Department of Primary Care and Population Health, Upper 3rd Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK form of cancer. Patients in remission or recovery were eligible 900 J Canc Educ (2021) 36:899–908 only if they had not been in remission for longer than 5 years, Data Extraction and Management a key milestone in cancer survivorship [9]. Data were extracted into an extraction form, which was piloted and refined. Data extracted from each paper were as Intervention and Comparator follows: title, year of publication, country of study setting, study design, population studied, methods of data collection Patients that had received any form of treatment, be it curative and analysis and results. The needs identified in each paper or palliative, could be included. As this review was not were classified as informational, emotional, spiritual, social or assessing the effectiveness of an intervention program, there other. For quantitative data, scores or rankings for each need was no appropriate comparator or control group. were recorded, along with whether needs differed between sub-groups. For qualitative data, overarching themes, sub- Outcomes themes and illustrative quotes were extracted. The primary outcome was the identification of any supportive care needs, categorised into emotional, informational, spiritu- Data Synthesis al, social or “other”. Needs could be specifically identified, or could be inferred from reported distress, e.g. patients reporting Data were analysed using a narrative synthesis method [11]; high levels of loneliness would be categorised as having an this allowed for the synthesis of qualitative and quantitative emotional need. data and analysis of whether medical or demographic factors shaped patient needs [11, 12]. The first step was to group the needs identified in the pa- Study Type pers into the categories specified in the primary literature. Seven categories of need were identified in the included pa- Inclusion criteria: Any study design which included collection pers: emotional, sexual, spiritual, social, financial, daily liv- of primary data, quantitative or qualitative, was eligible for ing, nutritional and informational. The second step was to map inclusion. these categories onto the Corbin & Strauss “Three lines of Exclusion criteria: Papers which did not include new pri- work” model of chronic disease management. The model mary data (e.g. reviews, meta-analyses, editorials), had not identifies three types of work associated with managing a been peer reviewed or were not available in English. long-term condition: illness-related work, everyday life work and biographical work [13]. Within each group, the relative Search importance and prevalence of all the needs identified in the primary literature were compared to identify which were the The search strategy was the keywords: [emotional need] or most common and urgent. [spiritual need] or [social need] or [emotional need] AND Our goal was to clarify the commonality of the ex- [Neoplasm(s)] either appearing in the title, abstract, subject perience of “cancer”, irrespective of the type of cancer, heading, keyword heading, protocol supplementary concept, thus providing an overview of the common and impor- rare disease supplementary concept or as a unique identifier. tant support needs faced by people with cancer, and The search was carried out on PsycInfo, Embase and hence an understanding of where supportive care is Medline databases, on 24 April 2018. This selection was most needed. In instances where there was conflicting based on a review of which databases have the highest recall evidence in the primary literature on the importance of rate, while also needing to produce a manageable number of a specific need, clinical and demographic differences results [10]. between study populations were reviewed in order to Reference lists of included papers were searched for poten- understand the potential reasons for this conflict. tially eligible studies. The Corbin & Strauss model was chosen because the categories of need identified in the primary literature Study Selection clearly corresponded to the types of work in the model (Fig. 2). Using the model as a framework to synthesise Titles and abstracts were screened against the inclusion/ the data allowed us to compare the relative importance exclusion criteria, and 10% of papers were also screened by of needs from different categories that fell under the a second author. For any paper that could not be confidently same type of work. The simplicity of the model meant excluded, the full paper was read to determine whether it it could be consistently applied to needs that were iden- should be included. There was 100% agreement between the tified and categorised using a number of different screeners about which papers should be excluded. methodologies. J Canc Educ (2021) 36:899–908 901 Results groups. Eleven studies only included patients at a certain stage of cancer or time since diagnosis. Thirty-nine studies took place in Study Selection high-income countries, 6 were from middle income countries and 1 took place in a low-income country. In total, 2535 papers were identified, and 540 duplicates were re- moved. After screening against the criteria, 1829 papers were re- Needs of Cancer Patients moved, and the remaining 80 papers were read in full (Fig. 1). Forty-six papers were found to be eligible for inclusion in this review. Thirty-two papers mentioned informational needs, 31 mentioned emotional needs, 24 mentioned spiritual needs and 19 mentioned social needs. Thirty-five papers mentioned needs in at least one of Study Characteristics these other categories: nutritional, sexual, daily living or financial. The resulting needs identified were grouped according to Of the 46 studies, 34 were quantitative, 10 were qualitative and the different forms of chronic disease “work” defined by the two were mixed methods. Study population sizes ranged from 7 Corbin & Strauss framework (Fig. 2). to 1059 participants. Fifteen papers focused on patients with a specific type of cancer, with breast and colorectal cancer being the most common. Three studies looked at patients from specific Illness-Related Work ethnic backgrounds. Eight papers focused on patients receiving a specific form of care/treatment. Three papers focused on children Illness-related work, defined by Corbin & Strauss, is “the or young adults. Three papers looked at adults within specific age tasks of controlling symptoms; monitoring, preventing crises; Fig. 1 PRISMA flow diagram of Embase Medline PyscINFO the paper identification process N= 1395 N= 683 N= 457 Initial search N = 2535 Duplicate records removed N= 540 Non-English language articles N= 86 Records screened Wrong population N= 558 N= 1909 Wrong outcome measure N= 614 Records Intervention evaluation excluded N= 304 N= 1831 Assessing medical needs N=151 Full paper not available Full text articles N= 99 assessed for edibility N= 80 Ineligible article type N= 103 Records excluded upon full assessment N= 34 Final list of studies included N= 46 Eligibility Screening Identification 902 J Canc Educ (2021) 36:899–908 Fig. 2 Illustration of how the Emotional different domains of need identified fit into Corbin and Strauss’ 3 lines of work model of managing chronic illness Biographical Sexual work Spiritual Social Everyday life Financial work Daily Living Nutritional Illness- Informational related work carrying out regimens and managing limitations of activity” of their hospital stay [32] and when their life would return to [13]. The central goal of illness-related work for patients is to “normal” [26, 31, 33, 39]. One paper reported that being given understand their illness and treatment, and subsequently the “vague” answers by HCPs frustrated patients [38]. need for information is consistently reported as a high priority [14–29]. The only paper that did not find a high level of 1- Knowing what to expect Beaver, 2010. Colorectal cancer patients - “I’ve learned myself really… informational need specifically measured unmet need [30]. trial and error.” Most frequently patients wanted to know what treatment “Idon’t think there was enough information about what sort of nutrition they were receiving and how it worked [20, 26, 27, 29, you need… I have made a point of finding out about this through 31–36], why that treatment had been selected, its effectiveness reading magazines and through the internet” Beaver, 2016. Breast cancer patients- “Nobody prepared me for that at and its pros and cons [14, 20–24, 26, 35]. Patients also fre- all, that aspect of it.” quently searched for more specific information about their diagnosis and prognosis [15, 20–25, 29, 31, 33, 34]. Patients wanted to know what to expect from their illness In regard to treatment, patients most often wanted to know and treatment [15, 16, 31, 33–35, 37, 38] (Box 1). This in- what the possible side effects were [16, 18, 21, 22, 25, 27, 31, cluded knowing about the chance of a relapse [26], the length 33, 37, 38, 40, 41] and how they could manage or relieve them J Canc Educ (2021) 36:899–908 903 [14, 17, 19, 22–24, 26, 31, 33, 35, 42, 43]. The importance of diagnosis was overwhelming and preferred receiving in- this information may depend on the stage of the patient’s formation as it became relevant [34, 37, 39, 41]. treatment, as patients receiving follow-up or palliative care placed less importance on symptom management [25, 27]. Everyday Life Work Wanting to minimise the impact of side effects speaks to a commonly reported desire among patients to be as healthy as This area of need encapsulates “the daily round of tasks possible [14, 15, 18, 19, 22–24, 26–29, 33, 38–40]. This aim that helps keep a household going”, which includes the is also seen in the nutritional needs of patients [16, 20, 33, 40, practical tasks involved in managing an illness, along 41, 44]. Rather than receiving generic information about with trying to maintain the structure of life pre- healthy diets, patients wanted more specific advice around diagnosis [13]. The most frequently reported social foods that could aid recovery or minimise side effects [16, needs were about patients’ concern for their family 40, 41]. Nutritional needs had an outsized importance in stud- [17, 20, 21, 26, 39, 46–48]. The importance of main- ies involving Native American patients and colorectal cancer taining relationships with their partner, children or patients [16, 40]. For colorectal cancer patients, nutritional friends were all mentioned [15, 29, 37, 42, 45, 47], needs are likely higher as their cancer directly affects their although notably not among patients with incurable can- digestive system. Within the Native American population, cer [27]. There was no consensus on whether patients there was a strong interest in information about traditional wanted to discuss their cancer with loved ones; some foods, possibly due to culturally specific reasons [40]. papers found this to be highly important, others did Generally, patients wanted their test results as soon as pos- not [20, 31, 36, 42, 49]. While there were no clear sible [21, 22, 24, 27, 33, 43] and wanted the meaning of the demographic or medical factors connected to this varia- results explained to them [21, 22, 26, 34, 43]. The importance tion, Kent (2013) reported that patients whose existing of this information to patients could be due to a desire to have relationships had been heavily affected by their diagno- some say in the treatment they are given [18, 33, 34, 45], sis were more likely to want to talk about cancer [49]. although the level of interest in alternative treatments varied Patients wanted to live a life they consider “normal”, significantly [14, 18, 24, 40, 44] (Box 2). The only study reflected by the importance placed on daily living needs. where information about tests was less important involved The most common difficulties patients faced were coping with newly diagnosed patients [18]. a lack of energy [17, 19, 21, 27, 28, 30, 36, 38, 43]and wanting to do the things they used to do [19, 21, 26, 28, 31, 2 - Being involved with treatment decisions 39] (Box 3). Patients placed a high value on socialising and Tamburini, 2003.- “speaking about it together with him/her could help to leisure time [15, 26, 32, 45] and reported a fear of being find a more adaptive solution to my demands, perhaps changing a little isolated or abandoned [16, 18, 20]. The importance of main- of what he/she might administer.” taining a job was influenced by age, with younger patients “However, the doctor must explain the purpose of the therapy he/she adopts so that I can make a distinction too.” being more interested in how cancer will affect their career and their employment rights [15, 18, 20, 26, 29, 33, 39, 42]. The final area of illness-related work highlighted by this 3 - On living a “normal” life Heidari, 2016. - “I am eager to know when I can start my regular activ- review was communication. Patients wanted to be able to ities. When can I start cooking?” communicate with their HCPs [18, 27, 34, 40] but often felt On employment unsure of when or who to direct questions to [24, 26, 35, 36, “Returning to work is a kind of social support for me.” 38]. Having a single HCP who they could talk to about all aspects of treatment was a high priority [19, 21–23, 28, 43]. The final practical need identified was financial, Less important was the need to talk to a professional counsel- though the level of need was highly dependent on lo- lor [25, 27, 36, 43]. cation. Patient populations with greater access to Although a general need for information was consis- healthcare placed lower importance on financial needs tent across all included studies, not all patients wanted a [25, 27, 29, 30, 33] (Box 4). The needs in these groups high volume of information. A significant minority of related to wanting financial stability and informational patients only wanted to know essential information or support [45, 50], with low levels of interest in economic did not want to receive bad news [29, 31, 46]. Age may aid [34]. Patients in countries with more limited access play a role in this dynamic, as multiple papers reported to healthcare reported higher levels of financial stress older people wanted less information [14, 15, 20, 22, andrelianceonfamilyfor monetary support[32, 46]. 25, 26, 31, 44], whileonlyacouplefoundnorelation- This was true in all US-based studies, apart from one in ship [28, 34]. Timing could also be a factor, as some which the mean income of participants was high [18, patients felt the amount of information received when 20, 24, 28]. For these populations, financial concerns 904 J Canc Educ (2021) 36:899–908 included managing bills [18, 24], bankruptcy assistance terminal cancer patients to discuss things other than illness [18], paying for care [20, 32, 46] and homelessness [54]. [46]. A few financial needs were common across healthcare systems, being able to maintain a basic stan- 6 - On not wanting to be a burden Beaver, 2016. Breast cancer patients- “And then my son and he was only dard of living [27, 30, 45, 46] and helping understand- seventeen at that time…. And I just thought, I shouldn't have put him ing financial systems and resources [18, 25, 26, 34], through this.” though again the level of importance varied. On being vulnerable Beaver, 2016. Breast cancer patients- “Don't like being trouble to any- body. And I think somebody should have sat me down and said “look, I 4 - On financial security think you need some help.” Hsiao, 2011. Patients with advanced cancer- “How lucky we are to have Shih, 2009. - “I was embarrassed to ask for my children’s comfort and government health insurance, otherwise the long-term hospital ex- companionship because I used to be their leader and protector.” penses would be a burden on my offspring.” Sexuality is another part of identity that can be impacted by cancer. Patients wanted to know how cancer would impact Biographical Work their sex drive, sexuality [14, 17, 20, 26, 29] and their intimate relationships [14, 17, 30, 31] but often felt uncomfortable Biographical work is defined as “the work involved in defin- discussing these needs with their HCPs [14, 18, 20, 26] ing and maintaining an identity” [13]. This involves coming to (Box 7). When ranked alongside other needs, sexuality was terms with and contextualising a diagnosis within a persons’ reported to be of lesser importance to most patients [17, 19, identity [42, 45]. Patients wanted to be treated as individuals 21, 22, 35, 42, 43], apart from prostate cancer patients, who [16, 19, 21, 22, 34], be reassured [19, 34], have their feelings reported the impact on their sex drive and sexual activity as acknowledged [19, 22], be respected [34, 45] and have their some of the most significant changes they faced [14, 30, 38] dignity preserved [47](Box 5). (Box 7). Higher sexuality-related needs were also identified in patients with colorectal and breast cancer, although not at the 5 - On being treated like a person same level [22, 30]. Of the papers that looked, five out of the Beaver, 2010. Colorectal cancer patients- “I feel as if the doctors come six studies found a relationship between age and importance and they examine you like, well you’re just a number and they have a of sexual identity, with younger patients having a greater need look at you and that’sit.” Tamburini, 2003- “Then they moved on, without saying hello, without for information on sex [17, 22, 26, 31] and individuals over 40 making eye contact.” wanting more guidance on fertility [18]. One study involving younger patients did report limited interest in sexuality; how- Biographical work includes dealing with the emotional im- ever, the majority of patients were under 18 and therefore were pact of cancer. Feelings of despair or depression were com- less likely to be sexually active [42]. mon [19, 21, 23, 28, 30, 42, 51, 52], as well as distress and anxiety [16, 21, 28, 30, 35, 38, 43]. Patients also reported a 7 - On difficulty asking questions about sex range of fears including cancer itself [17, 21, 23, 31, 43, 51], Heidari, 2016- “It is difficult to ask sexual questions, it is very hard, I am their treatment [35, 37], dying [17, 19, 42, 52] and pain [27]. ashamed” “I do apologize, the question I always wanted to ask but I never did was Physical changes also negatively affected patients’ sense of sexual disinclination. I could never ask about this” self [26, 27, 29, 30, 38, 42, 45–47]. Consequently, the need for On the changes in their sexuality relaxation and stress management was high [23, 24, 33, 48, Grimsbo, 2011. Prostate cancer patients- “The only thing that doesn’t 52]. function is my sex life, it’s completely dead” “I would have paid a lot to get my sex drive back.” Patients struggled to deal with the uncertainty [15, 17, 19, 28, 30, 42, 43, 46, 51] and expressed a desire for more control [17, 19–21, 27, 28, 30, 42, 43, 53]. To cope, patients placed a Much like with sexual identity, patients’ spiritual needs lot of importance on receiving support from loved ones [14, were not highly important when ranked alongside other do- 18, 32, 35, 36, 42, 51]. However, this directly conflicted with mains [23, 24, 27, 28, 33, 34, 40, 45], but papers that focused their fear of being a burden and a perceived pressure to “stay solely on spirituality reported widespread need [47, 48, 52, strong” [20, 27, 37, 45, 46, 51, 53](Box 6). Other patients 54–58]. There was no consensus on the importance of were identified as a source of support for some [18, 34, 37, 49, accessing religious resources, some papers reported a strong 52], but others, especially those who were receiving follow-up need for religious support [23, 32, 45, 55, 56, 59], but more or palliative care, were less interested in talking to other pa- papers reported low levels of interest [24, 28, 33, 48, 51, 52, tients [25, 35, 45, 47]. This aligns with a reported need among 54, 57, 60]. In line with this, the most commonly reported J Canc Educ (2021) 36:899–908 905 spiritual needs were not explicitly religious. This included Previous Literature maintaining a sense of calm [45–48, 52, 53, 55, 56, 58, 60], staying positive or hopeful [23, 24, 32, 45, 47, 48, 57–59]and This review confirms the findings of previous reviews focused being able to appreciate or find meaning in life [32, 45, 47, 48, on specific types of need or specific populations. The most 55–57, 59, 60]. Generally, there was little reported interest in common needs identified as illness-related work in this study discussing death or dying [23, 24, 27, 42, 45, 48, 52, 60]or correspond to key informational needs highlighted in previous making sense of why this happened [34, 55–57]. Much like reviews [61, 62]. The spiritual needs discussed have also been the importance of family relationships in everyday work, be- found to be key in improving psycho-spiritual wellbeing in ing with loved ones was important for patients’ spiritual other research [63]. While our review did not assess the ability wellbeing [47, 51, 53–58, 60]. However, some patients report- of current care models to meet these needs, it is noteworthy ed that being part of a religious community gave them similar that the key needs we identified have been found to frequently support [46, 51, 53, 55, 60]. go unmet in other research [64, 65]. The most commonly reported religious need for patients was toprayor beprayed for [32, 46, 48, 55–57, 59]. The fact Strengths and Limitations that prayer was also important for non-religious participants suggests that it may be seen as a spiritual practice for some The main strength of this study is its inclusive nature, looking patients. A small number of papers reported that having a across all populations and all types of cancer. This, combined relationship with God was important to patients [15, 48, 56, with the theoretical underpinning and use of the Corbin & 57, 59], with some patients viewing God as a saviour from Strauss model, provides reassurance about the overall trans- illness [40, 46, 59], while others felt that God caused their ferability of these findings to other clinical populations. illness as punishment or as a test of faith [46, 47, 51](Box 8). The main limitation pertains to the scope of the primary literature, with most of the studies coming from high-income Box 8:On relationshipwith God countries, and only 7 papers from low- or middle-income Hsiao, 2011. “My disease resulted from previous bad karma” countries. While the nature of patients’ financial needs were Elsner, 2012. “I believe that God will cure my disease, he is the one who is protecting me from worsening of the disease.” clearly dependent on country, setting may also influence other needs in less direct ways, limiting how universal the findings are. Additionally, the majority of studies used opportunistic Cultural factors may also influence spiritual needs. The sampling so may not accurately capture the needs of the gen- afterlife was found to be an important concern for some pa- eral cancer population. Most included studies were not longi- tients [52, 53, 55], but not if their culture had little belief in the tudinal and therefore could not analyse how patients’ concerns concept [47]. In the same way, having a legacy was a key need changed over time. Finally, potentially relevant demographic in one paper due to the importance of continuity after death in information was not always collected. For example, only one that culture [53]. of the papers that examined sexuality collected information about sexual orientation, and only a couple of studies that measured financial need recorded socioeconomic status. Discussion This is the first review to synthesise data about cancer pa- Conclusions tients’ supportive needs across all populations and cancer types. There was remarkable consistency in the needs identi- This review highlights a number of underlying issues that fied, and these were well explained by the Corbin & Strauss affect cancer patients. These findings are consistent with the model of managing a chronic condition [13]. Almost all stud- previous literature and fit well with multiple chronic illness ies confirmed patients’ need for high-quality, comprehensible frameworks, which suggests that they are robust enough to and timely information about their illness, treatments and how inform best practice. The most common needs identified sup- best to manage their symptoms. Such information was neces- port the argument for empowering people with cancer through sary for patients to undertake illness-related, everyday living a patient-centred form of care. and biographical work. In addition, patients needed support in Priorities for practice should be to ensure patients under- dealing with emotional issues, including existential uncertain- stand their illness and what they can expect throughout their ty, changing relationships with friends and family and practi- treatment pathway. Supportive care should work to enable cal support with everyday tasks. patients to live a life they recognise as “normal” and help them 906 J Canc Educ (2021) 36:899–908 6. Li HW, Lopez V, Chung OJ, Ho KY, Chiu SY (2013) The impact maintain their closest relationships. HCPs should ensure that of cancer on the physical, psychological and social well-being of patients always feel that they are being treated as individuals childhood cancer survivors. Eur J Oncol Nurs 17(2):214–219 and know who to go to when they have questions. These key 7. Kroenke CH, Kubzansky LD, Schernhammer ES, Holmes MD, needs should be addressed as a first step to provide a strong Kawachi I (2006) Social networks, social support, and survival after breast cancer diagnosis. J Clin Oncol 24(7):1105–1111 basis of care before providing more individualised support. 8. Brown KW, Levy AR, Rosberger Z, Edgar L (2003) Psychological Further research should focus on how to ensure these needs distress and cancer survival: a follow-up 10 years after diagnosis. are addressed effectively. Evaluation of supportive care inter- Psychosom Med 65(4):636–643 ventions should remain focused on the experiences of patients 9. Welch HG, Schwartz LM, Woloshin S (2000) Are increasing 5- year survival rates evidence of success against cancer? Jama. to allow them to have a voice in their care. Additional research 283(22):2975–2978 on when different needs arise over the disease progression 10. Bramer WM, Rethlefsen ML, Kleijnen J, Franco OH (2017) would help ensure that resources are provided only when Optimal database combinations for literature searches in systematic needed. reviews: a prospective exploratory study. Systematic reviews 6(1): Supplementary Information The online version contains supplementary 11. Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M material available at https://doi.org/10.1007/s13187-020-01941-9. et al (2006) Guidance on the conduct of narrative synthesis in sys- tematic reviews. A product from the ESRC methods programme Version 1:b92 Compliance with Ethical Standards 12. Barnett-Page E, Thomas J (2009) Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol Conflict of Interest This work was part-funded by the MacMillan 9(1):59 Cancer Support Research Grant number 6488115. Elizabeth Murray re- 13. Corbin JM, Strauss A. Unending work and care: managing chronic ceives funding from the NIHR School for Primary Care Research and the illness at home: Jossey-Bass; 1988 NIHR Collaboration for Leadership in Applied Health Research and Care 14. Boberg EW, Gustafson DH, Hawkins RP, Offord KP, Koch C, North Thames. Henry Goodfellow is funded through an NIHR Academic Wen K-Y, Kreutz K, Salner A (2003) Assessing the unmet infor- Clinical Fellowship. Jamie Ross is funded by an NIHR School for mation, support and care delivery needs of men with prostate can- Primary Care Research fellowship. cer. Patient Educ Couns 49(3):233–242 15. Derdiarian AK (1986) Informational needs of recently diagnosed Open Access This article is licensed under a Creative Commons cancer patients. Nurs Res 35(5):276–281 Attribution 4.0 International License, which permits use, sharing, 16. 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The Supportive Care Needs of Cancer Patients: a Systematic Review

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Springer Journals
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10.1007/s13187-020-01941-9
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Abstract

Cancer, and the complex nature of treatment, has a profound impact on lives of patients and their families. Subsequently, cancer patients have a wide range of needs. This study aims to identify and synthesise cancer patients’ views about areas where they need support throughout their care. A systematic search of the literature from PsycInfo, Embase and Medline databases was conducted, and a narrative. Synthesis of results was carried out using the Corbin & Strauss “3linesof work” framework. For each line of work, a group of key common needs were identified. For illness-work, the key needs idenitified were; understanding their illness and treatment options, knowing what to expect, communication with healthcare professionals, and staying well. In regards to everyday work, patients wanted to maintain a sense of normalcy and look after their loved ones. For biographical work, patients commonly struggled with the emotion impact of illness and a lack of control over their lives. Spiritual, sexual and financial problems were less universal. For some types of support, demographic factors influenced the level of need reported. While all patients are unique, there are a clear set of issues that are common to a majority of cancer journeys. To improve care, these needs should be prioritised by healthcare practitioners. . . . Keywords Supportive care Cancer Patient needs Holistic Introduction cancer. It is therefore important that the support offered to cancer patients improves to meet this growing demand. Rationale Cancer care pathways are often spread across multiple facili- ties and delivered by healthcare practitioners (HCP), which make Over 42 million people worldwide are currently living with it challenging for a patient’s wider support needs to be met. This cancer [1]. A cancer diagnosis often results in biographical has an impact on patient wellbeing [6] and survival outcomes [7, disruption [2] and distress [3], sometimes lasting years post- 8]. Many studies focus on the needs of specific patient groups, treatment [4, 5]. As survival rates continue to increase, more defined by diagnosis, treatment or demographics, but there is no individuals will have to live with the long-term implications of broad consensus on how common or dissimilar patients’ support- ive care needs are across types of cancer and populations. The aim of this study was to synthesise existing data on the support * Elizabeth Murray needs of cancer patients across populations. Identifying the com- Elizabeth.murray@ucl.ac.uk mon underlying needs of cancer patients, as well as needs that are specific to a patient’s diagnosis or background, will help HCPs Madeleine Evans Webb Madeleine.webb.17@ucl.ac.uk provide comprehensive support more efficiently. Zane William Younger zanewyounger@gmail.com Henry Goodfellow Methods Henry.goodfellow@nhs.net Jamie Ross Eligibility Criteria Jamie.Ross@ucl.ac.uk Population UCL Research Department of Epidemiology & Public Health, 1-19 Torrington Place, London WC1E 6BT, UK Inclusion criteria: Any patient undergoing treatment for any Department of Primary Care and Population Health, Upper 3rd Floor, Royal Free Hospital, Rowland Hill Street, London NW3 2PF, UK form of cancer. Patients in remission or recovery were eligible 900 J Canc Educ (2021) 36:899–908 only if they had not been in remission for longer than 5 years, Data Extraction and Management a key milestone in cancer survivorship [9]. Data were extracted into an extraction form, which was piloted and refined. Data extracted from each paper were as Intervention and Comparator follows: title, year of publication, country of study setting, study design, population studied, methods of data collection Patients that had received any form of treatment, be it curative and analysis and results. The needs identified in each paper or palliative, could be included. As this review was not were classified as informational, emotional, spiritual, social or assessing the effectiveness of an intervention program, there other. For quantitative data, scores or rankings for each need was no appropriate comparator or control group. were recorded, along with whether needs differed between sub-groups. For qualitative data, overarching themes, sub- Outcomes themes and illustrative quotes were extracted. The primary outcome was the identification of any supportive care needs, categorised into emotional, informational, spiritu- Data Synthesis al, social or “other”. Needs could be specifically identified, or could be inferred from reported distress, e.g. patients reporting Data were analysed using a narrative synthesis method [11]; high levels of loneliness would be categorised as having an this allowed for the synthesis of qualitative and quantitative emotional need. data and analysis of whether medical or demographic factors shaped patient needs [11, 12]. The first step was to group the needs identified in the pa- Study Type pers into the categories specified in the primary literature. Seven categories of need were identified in the included pa- Inclusion criteria: Any study design which included collection pers: emotional, sexual, spiritual, social, financial, daily liv- of primary data, quantitative or qualitative, was eligible for ing, nutritional and informational. The second step was to map inclusion. these categories onto the Corbin & Strauss “Three lines of Exclusion criteria: Papers which did not include new pri- work” model of chronic disease management. The model mary data (e.g. reviews, meta-analyses, editorials), had not identifies three types of work associated with managing a been peer reviewed or were not available in English. long-term condition: illness-related work, everyday life work and biographical work [13]. Within each group, the relative Search importance and prevalence of all the needs identified in the primary literature were compared to identify which were the The search strategy was the keywords: [emotional need] or most common and urgent. [spiritual need] or [social need] or [emotional need] AND Our goal was to clarify the commonality of the ex- [Neoplasm(s)] either appearing in the title, abstract, subject perience of “cancer”, irrespective of the type of cancer, heading, keyword heading, protocol supplementary concept, thus providing an overview of the common and impor- rare disease supplementary concept or as a unique identifier. tant support needs faced by people with cancer, and The search was carried out on PsycInfo, Embase and hence an understanding of where supportive care is Medline databases, on 24 April 2018. This selection was most needed. In instances where there was conflicting based on a review of which databases have the highest recall evidence in the primary literature on the importance of rate, while also needing to produce a manageable number of a specific need, clinical and demographic differences results [10]. between study populations were reviewed in order to Reference lists of included papers were searched for poten- understand the potential reasons for this conflict. tially eligible studies. The Corbin & Strauss model was chosen because the categories of need identified in the primary literature Study Selection clearly corresponded to the types of work in the model (Fig. 2). Using the model as a framework to synthesise Titles and abstracts were screened against the inclusion/ the data allowed us to compare the relative importance exclusion criteria, and 10% of papers were also screened by of needs from different categories that fell under the a second author. For any paper that could not be confidently same type of work. The simplicity of the model meant excluded, the full paper was read to determine whether it it could be consistently applied to needs that were iden- should be included. There was 100% agreement between the tified and categorised using a number of different screeners about which papers should be excluded. methodologies. J Canc Educ (2021) 36:899–908 901 Results groups. Eleven studies only included patients at a certain stage of cancer or time since diagnosis. Thirty-nine studies took place in Study Selection high-income countries, 6 were from middle income countries and 1 took place in a low-income country. In total, 2535 papers were identified, and 540 duplicates were re- moved. After screening against the criteria, 1829 papers were re- Needs of Cancer Patients moved, and the remaining 80 papers were read in full (Fig. 1). Forty-six papers were found to be eligible for inclusion in this review. Thirty-two papers mentioned informational needs, 31 mentioned emotional needs, 24 mentioned spiritual needs and 19 mentioned social needs. Thirty-five papers mentioned needs in at least one of Study Characteristics these other categories: nutritional, sexual, daily living or financial. The resulting needs identified were grouped according to Of the 46 studies, 34 were quantitative, 10 were qualitative and the different forms of chronic disease “work” defined by the two were mixed methods. Study population sizes ranged from 7 Corbin & Strauss framework (Fig. 2). to 1059 participants. Fifteen papers focused on patients with a specific type of cancer, with breast and colorectal cancer being the most common. Three studies looked at patients from specific Illness-Related Work ethnic backgrounds. Eight papers focused on patients receiving a specific form of care/treatment. Three papers focused on children Illness-related work, defined by Corbin & Strauss, is “the or young adults. Three papers looked at adults within specific age tasks of controlling symptoms; monitoring, preventing crises; Fig. 1 PRISMA flow diagram of Embase Medline PyscINFO the paper identification process N= 1395 N= 683 N= 457 Initial search N = 2535 Duplicate records removed N= 540 Non-English language articles N= 86 Records screened Wrong population N= 558 N= 1909 Wrong outcome measure N= 614 Records Intervention evaluation excluded N= 304 N= 1831 Assessing medical needs N=151 Full paper not available Full text articles N= 99 assessed for edibility N= 80 Ineligible article type N= 103 Records excluded upon full assessment N= 34 Final list of studies included N= 46 Eligibility Screening Identification 902 J Canc Educ (2021) 36:899–908 Fig. 2 Illustration of how the Emotional different domains of need identified fit into Corbin and Strauss’ 3 lines of work model of managing chronic illness Biographical Sexual work Spiritual Social Everyday life Financial work Daily Living Nutritional Illness- Informational related work carrying out regimens and managing limitations of activity” of their hospital stay [32] and when their life would return to [13]. The central goal of illness-related work for patients is to “normal” [26, 31, 33, 39]. One paper reported that being given understand their illness and treatment, and subsequently the “vague” answers by HCPs frustrated patients [38]. need for information is consistently reported as a high priority [14–29]. The only paper that did not find a high level of 1- Knowing what to expect Beaver, 2010. Colorectal cancer patients - “I’ve learned myself really… informational need specifically measured unmet need [30]. trial and error.” Most frequently patients wanted to know what treatment “Idon’t think there was enough information about what sort of nutrition they were receiving and how it worked [20, 26, 27, 29, you need… I have made a point of finding out about this through 31–36], why that treatment had been selected, its effectiveness reading magazines and through the internet” Beaver, 2016. Breast cancer patients- “Nobody prepared me for that at and its pros and cons [14, 20–24, 26, 35]. Patients also fre- all, that aspect of it.” quently searched for more specific information about their diagnosis and prognosis [15, 20–25, 29, 31, 33, 34]. Patients wanted to know what to expect from their illness In regard to treatment, patients most often wanted to know and treatment [15, 16, 31, 33–35, 37, 38] (Box 1). This in- what the possible side effects were [16, 18, 21, 22, 25, 27, 31, cluded knowing about the chance of a relapse [26], the length 33, 37, 38, 40, 41] and how they could manage or relieve them J Canc Educ (2021) 36:899–908 903 [14, 17, 19, 22–24, 26, 31, 33, 35, 42, 43]. The importance of diagnosis was overwhelming and preferred receiving in- this information may depend on the stage of the patient’s formation as it became relevant [34, 37, 39, 41]. treatment, as patients receiving follow-up or palliative care placed less importance on symptom management [25, 27]. Everyday Life Work Wanting to minimise the impact of side effects speaks to a commonly reported desire among patients to be as healthy as This area of need encapsulates “the daily round of tasks possible [14, 15, 18, 19, 22–24, 26–29, 33, 38–40]. This aim that helps keep a household going”, which includes the is also seen in the nutritional needs of patients [16, 20, 33, 40, practical tasks involved in managing an illness, along 41, 44]. Rather than receiving generic information about with trying to maintain the structure of life pre- healthy diets, patients wanted more specific advice around diagnosis [13]. The most frequently reported social foods that could aid recovery or minimise side effects [16, needs were about patients’ concern for their family 40, 41]. Nutritional needs had an outsized importance in stud- [17, 20, 21, 26, 39, 46–48]. The importance of main- ies involving Native American patients and colorectal cancer taining relationships with their partner, children or patients [16, 40]. For colorectal cancer patients, nutritional friends were all mentioned [15, 29, 37, 42, 45, 47], needs are likely higher as their cancer directly affects their although notably not among patients with incurable can- digestive system. Within the Native American population, cer [27]. There was no consensus on whether patients there was a strong interest in information about traditional wanted to discuss their cancer with loved ones; some foods, possibly due to culturally specific reasons [40]. papers found this to be highly important, others did Generally, patients wanted their test results as soon as pos- not [20, 31, 36, 42, 49]. While there were no clear sible [21, 22, 24, 27, 33, 43] and wanted the meaning of the demographic or medical factors connected to this varia- results explained to them [21, 22, 26, 34, 43]. The importance tion, Kent (2013) reported that patients whose existing of this information to patients could be due to a desire to have relationships had been heavily affected by their diagno- some say in the treatment they are given [18, 33, 34, 45], sis were more likely to want to talk about cancer [49]. although the level of interest in alternative treatments varied Patients wanted to live a life they consider “normal”, significantly [14, 18, 24, 40, 44] (Box 2). The only study reflected by the importance placed on daily living needs. where information about tests was less important involved The most common difficulties patients faced were coping with newly diagnosed patients [18]. a lack of energy [17, 19, 21, 27, 28, 30, 36, 38, 43]and wanting to do the things they used to do [19, 21, 26, 28, 31, 2 - Being involved with treatment decisions 39] (Box 3). Patients placed a high value on socialising and Tamburini, 2003.- “speaking about it together with him/her could help to leisure time [15, 26, 32, 45] and reported a fear of being find a more adaptive solution to my demands, perhaps changing a little isolated or abandoned [16, 18, 20]. The importance of main- of what he/she might administer.” taining a job was influenced by age, with younger patients “However, the doctor must explain the purpose of the therapy he/she adopts so that I can make a distinction too.” being more interested in how cancer will affect their career and their employment rights [15, 18, 20, 26, 29, 33, 39, 42]. The final area of illness-related work highlighted by this 3 - On living a “normal” life Heidari, 2016. - “I am eager to know when I can start my regular activ- review was communication. Patients wanted to be able to ities. When can I start cooking?” communicate with their HCPs [18, 27, 34, 40] but often felt On employment unsure of when or who to direct questions to [24, 26, 35, 36, “Returning to work is a kind of social support for me.” 38]. Having a single HCP who they could talk to about all aspects of treatment was a high priority [19, 21–23, 28, 43]. The final practical need identified was financial, Less important was the need to talk to a professional counsel- though the level of need was highly dependent on lo- lor [25, 27, 36, 43]. cation. Patient populations with greater access to Although a general need for information was consis- healthcare placed lower importance on financial needs tent across all included studies, not all patients wanted a [25, 27, 29, 30, 33] (Box 4). The needs in these groups high volume of information. A significant minority of related to wanting financial stability and informational patients only wanted to know essential information or support [45, 50], with low levels of interest in economic did not want to receive bad news [29, 31, 46]. Age may aid [34]. Patients in countries with more limited access play a role in this dynamic, as multiple papers reported to healthcare reported higher levels of financial stress older people wanted less information [14, 15, 20, 22, andrelianceonfamilyfor monetary support[32, 46]. 25, 26, 31, 44], whileonlyacouplefoundnorelation- This was true in all US-based studies, apart from one in ship [28, 34]. Timing could also be a factor, as some which the mean income of participants was high [18, patients felt the amount of information received when 20, 24, 28]. For these populations, financial concerns 904 J Canc Educ (2021) 36:899–908 included managing bills [18, 24], bankruptcy assistance terminal cancer patients to discuss things other than illness [18], paying for care [20, 32, 46] and homelessness [54]. [46]. A few financial needs were common across healthcare systems, being able to maintain a basic stan- 6 - On not wanting to be a burden Beaver, 2016. Breast cancer patients- “And then my son and he was only dard of living [27, 30, 45, 46] and helping understand- seventeen at that time…. And I just thought, I shouldn't have put him ing financial systems and resources [18, 25, 26, 34], through this.” though again the level of importance varied. On being vulnerable Beaver, 2016. Breast cancer patients- “Don't like being trouble to any- body. And I think somebody should have sat me down and said “look, I 4 - On financial security think you need some help.” Hsiao, 2011. Patients with advanced cancer- “How lucky we are to have Shih, 2009. - “I was embarrassed to ask for my children’s comfort and government health insurance, otherwise the long-term hospital ex- companionship because I used to be their leader and protector.” penses would be a burden on my offspring.” Sexuality is another part of identity that can be impacted by cancer. Patients wanted to know how cancer would impact Biographical Work their sex drive, sexuality [14, 17, 20, 26, 29] and their intimate relationships [14, 17, 30, 31] but often felt uncomfortable Biographical work is defined as “the work involved in defin- discussing these needs with their HCPs [14, 18, 20, 26] ing and maintaining an identity” [13]. This involves coming to (Box 7). When ranked alongside other needs, sexuality was terms with and contextualising a diagnosis within a persons’ reported to be of lesser importance to most patients [17, 19, identity [42, 45]. Patients wanted to be treated as individuals 21, 22, 35, 42, 43], apart from prostate cancer patients, who [16, 19, 21, 22, 34], be reassured [19, 34], have their feelings reported the impact on their sex drive and sexual activity as acknowledged [19, 22], be respected [34, 45] and have their some of the most significant changes they faced [14, 30, 38] dignity preserved [47](Box 5). (Box 7). Higher sexuality-related needs were also identified in patients with colorectal and breast cancer, although not at the 5 - On being treated like a person same level [22, 30]. Of the papers that looked, five out of the Beaver, 2010. Colorectal cancer patients- “I feel as if the doctors come six studies found a relationship between age and importance and they examine you like, well you’re just a number and they have a of sexual identity, with younger patients having a greater need look at you and that’sit.” Tamburini, 2003- “Then they moved on, without saying hello, without for information on sex [17, 22, 26, 31] and individuals over 40 making eye contact.” wanting more guidance on fertility [18]. One study involving younger patients did report limited interest in sexuality; how- Biographical work includes dealing with the emotional im- ever, the majority of patients were under 18 and therefore were pact of cancer. Feelings of despair or depression were com- less likely to be sexually active [42]. mon [19, 21, 23, 28, 30, 42, 51, 52], as well as distress and anxiety [16, 21, 28, 30, 35, 38, 43]. Patients also reported a 7 - On difficulty asking questions about sex range of fears including cancer itself [17, 21, 23, 31, 43, 51], Heidari, 2016- “It is difficult to ask sexual questions, it is very hard, I am their treatment [35, 37], dying [17, 19, 42, 52] and pain [27]. ashamed” “I do apologize, the question I always wanted to ask but I never did was Physical changes also negatively affected patients’ sense of sexual disinclination. I could never ask about this” self [26, 27, 29, 30, 38, 42, 45–47]. Consequently, the need for On the changes in their sexuality relaxation and stress management was high [23, 24, 33, 48, Grimsbo, 2011. Prostate cancer patients- “The only thing that doesn’t 52]. function is my sex life, it’s completely dead” “I would have paid a lot to get my sex drive back.” Patients struggled to deal with the uncertainty [15, 17, 19, 28, 30, 42, 43, 46, 51] and expressed a desire for more control [17, 19–21, 27, 28, 30, 42, 43, 53]. To cope, patients placed a Much like with sexual identity, patients’ spiritual needs lot of importance on receiving support from loved ones [14, were not highly important when ranked alongside other do- 18, 32, 35, 36, 42, 51]. However, this directly conflicted with mains [23, 24, 27, 28, 33, 34, 40, 45], but papers that focused their fear of being a burden and a perceived pressure to “stay solely on spirituality reported widespread need [47, 48, 52, strong” [20, 27, 37, 45, 46, 51, 53](Box 6). Other patients 54–58]. There was no consensus on the importance of were identified as a source of support for some [18, 34, 37, 49, accessing religious resources, some papers reported a strong 52], but others, especially those who were receiving follow-up need for religious support [23, 32, 45, 55, 56, 59], but more or palliative care, were less interested in talking to other pa- papers reported low levels of interest [24, 28, 33, 48, 51, 52, tients [25, 35, 45, 47]. This aligns with a reported need among 54, 57, 60]. In line with this, the most commonly reported J Canc Educ (2021) 36:899–908 905 spiritual needs were not explicitly religious. This included Previous Literature maintaining a sense of calm [45–48, 52, 53, 55, 56, 58, 60], staying positive or hopeful [23, 24, 32, 45, 47, 48, 57–59]and This review confirms the findings of previous reviews focused being able to appreciate or find meaning in life [32, 45, 47, 48, on specific types of need or specific populations. The most 55–57, 59, 60]. Generally, there was little reported interest in common needs identified as illness-related work in this study discussing death or dying [23, 24, 27, 42, 45, 48, 52, 60]or correspond to key informational needs highlighted in previous making sense of why this happened [34, 55–57]. Much like reviews [61, 62]. The spiritual needs discussed have also been the importance of family relationships in everyday work, be- found to be key in improving psycho-spiritual wellbeing in ing with loved ones was important for patients’ spiritual other research [63]. While our review did not assess the ability wellbeing [47, 51, 53–58, 60]. However, some patients report- of current care models to meet these needs, it is noteworthy ed that being part of a religious community gave them similar that the key needs we identified have been found to frequently support [46, 51, 53, 55, 60]. go unmet in other research [64, 65]. The most commonly reported religious need for patients was toprayor beprayed for [32, 46, 48, 55–57, 59]. The fact Strengths and Limitations that prayer was also important for non-religious participants suggests that it may be seen as a spiritual practice for some The main strength of this study is its inclusive nature, looking patients. A small number of papers reported that having a across all populations and all types of cancer. This, combined relationship with God was important to patients [15, 48, 56, with the theoretical underpinning and use of the Corbin & 57, 59], with some patients viewing God as a saviour from Strauss model, provides reassurance about the overall trans- illness [40, 46, 59], while others felt that God caused their ferability of these findings to other clinical populations. illness as punishment or as a test of faith [46, 47, 51](Box 8). The main limitation pertains to the scope of the primary literature, with most of the studies coming from high-income Box 8:On relationshipwith God countries, and only 7 papers from low- or middle-income Hsiao, 2011. “My disease resulted from previous bad karma” countries. While the nature of patients’ financial needs were Elsner, 2012. “I believe that God will cure my disease, he is the one who is protecting me from worsening of the disease.” clearly dependent on country, setting may also influence other needs in less direct ways, limiting how universal the findings are. Additionally, the majority of studies used opportunistic Cultural factors may also influence spiritual needs. The sampling so may not accurately capture the needs of the gen- afterlife was found to be an important concern for some pa- eral cancer population. Most included studies were not longi- tients [52, 53, 55], but not if their culture had little belief in the tudinal and therefore could not analyse how patients’ concerns concept [47]. In the same way, having a legacy was a key need changed over time. Finally, potentially relevant demographic in one paper due to the importance of continuity after death in information was not always collected. For example, only one that culture [53]. of the papers that examined sexuality collected information about sexual orientation, and only a couple of studies that measured financial need recorded socioeconomic status. Discussion This is the first review to synthesise data about cancer pa- Conclusions tients’ supportive needs across all populations and cancer types. There was remarkable consistency in the needs identi- This review highlights a number of underlying issues that fied, and these were well explained by the Corbin & Strauss affect cancer patients. These findings are consistent with the model of managing a chronic condition [13]. Almost all stud- previous literature and fit well with multiple chronic illness ies confirmed patients’ need for high-quality, comprehensible frameworks, which suggests that they are robust enough to and timely information about their illness, treatments and how inform best practice. The most common needs identified sup- best to manage their symptoms. Such information was neces- port the argument for empowering people with cancer through sary for patients to undertake illness-related, everyday living a patient-centred form of care. and biographical work. In addition, patients needed support in Priorities for practice should be to ensure patients under- dealing with emotional issues, including existential uncertain- stand their illness and what they can expect throughout their ty, changing relationships with friends and family and practi- treatment pathway. Supportive care should work to enable cal support with everyday tasks. patients to live a life they recognise as “normal” and help them 906 J Canc Educ (2021) 36:899–908 6. Li HW, Lopez V, Chung OJ, Ho KY, Chiu SY (2013) The impact maintain their closest relationships. HCPs should ensure that of cancer on the physical, psychological and social well-being of patients always feel that they are being treated as individuals childhood cancer survivors. Eur J Oncol Nurs 17(2):214–219 and know who to go to when they have questions. These key 7. Kroenke CH, Kubzansky LD, Schernhammer ES, Holmes MD, needs should be addressed as a first step to provide a strong Kawachi I (2006) Social networks, social support, and survival after breast cancer diagnosis. J Clin Oncol 24(7):1105–1111 basis of care before providing more individualised support. 8. Brown KW, Levy AR, Rosberger Z, Edgar L (2003) Psychological Further research should focus on how to ensure these needs distress and cancer survival: a follow-up 10 years after diagnosis. are addressed effectively. Evaluation of supportive care inter- Psychosom Med 65(4):636–643 ventions should remain focused on the experiences of patients 9. Welch HG, Schwartz LM, Woloshin S (2000) Are increasing 5- year survival rates evidence of success against cancer? Jama. to allow them to have a voice in their care. Additional research 283(22):2975–2978 on when different needs arise over the disease progression 10. Bramer WM, Rethlefsen ML, Kleijnen J, Franco OH (2017) would help ensure that resources are provided only when Optimal database combinations for literature searches in systematic needed. reviews: a prospective exploratory study. Systematic reviews 6(1): Supplementary Information The online version contains supplementary 11. Popay J, Roberts H, Sowden A, Petticrew M, Arai L, Rodgers M material available at https://doi.org/10.1007/s13187-020-01941-9. et al (2006) Guidance on the conduct of narrative synthesis in sys- tematic reviews. A product from the ESRC methods programme Version 1:b92 Compliance with Ethical Standards 12. Barnett-Page E, Thomas J (2009) Methods for the synthesis of qualitative research: a critical review. BMC Med Res Methodol Conflict of Interest This work was part-funded by the MacMillan 9(1):59 Cancer Support Research Grant number 6488115. Elizabeth Murray re- 13. 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Journal of Cancer Education – Springer Journals

Published: Oct 1, 2021

Keywords: Supportive care; Cancer; Patient needs; Holistic

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