Understanding the urgent and emergency care navigation work undertaken by people with cancer and their informal caregivers: a conceptually framed scoping review
Emergency Cancer Care volume 2, Article number: 2 (2023)
People with cancer frequently use urgent and emergency care. Reviews of research have focussed on the incidence and predictors of service use in this population, rather than how people make decisions about which service to access. Understanding what factors influence these choices will inform ways in which we might enable people with cancer to effectively access services.
(1) Describe research undertaken about choices made by people with cancer about routes to access urgent and emergency care; (2) characterise decisions made by patients and informal caregivers to use certain services, with specific reference to work involved in navigating access; and (3) identify research priorities.
Scoping review of qualitative and mixed methods studies. Electronic database searches (AMED, CINAHL, Embase, MEDLINE, PsycInfo) and ‘berrypicking’ identified 18 papers. Study, participant, and service characteristics were mapped, and Turnbull et al.’s Model of Urgent Care Help-seeking informed a directed qualitative content analysis.
Studies have involved people with advanced cancer to the relative exclusion of people with curable disease, receiving anticancer treatment, and who are multi-morbid. Six subcategories of navigation work were identified: (1) making decisions with, and seeking help from, specialists, (2) seeking safety, (3) positioning to access desired treatment, (4) negotiating tortuous pathways to help, (5) making decisions in collaboration with caregivers, and (6) managing isolation from services and social networks.
There are significant knowledge gaps and a need for more research, particularly studies of how different patient groups prepare for potential deterioration and make sense of systems of urgent and emergency care.
Evidence suggests people with cancer use urgent and emergency care (UEC) services more than the general population [1,2,3], often presenting with ‘high acuity, high symptom burden, and frequent need for admission’ ( , p.9). UEC use by people with cancer is expected to rise in tandem with an ageing population and increased survival . Reviews of research have identified factors associated with UEC use by people with cancer (e.g., symptom clusters, demographic factors) [4, 6,7,8] and interventions which aim to prevent emergency care use by this population [9, 10]. Psychosocial factors that might influence usage, and preferences and experiences of informal caregivers, remain neglected areas of research . To our knowledge, there is no overview of studies that has focussed on how people with cancer make decisions about which UEC service to access when acutely unwell. Understanding which services and patient groups have been studied, and what factors influence their choices, is needed to inform ways in which we might support patients to effectively access UEC for complications of cancer and its treatment.
Navigating UEC systems can be difficult for people with cancer . The concept of ‘work’ has been used to understand the decisions, activities, and tasks undertaken by patients and informal caregivers to manage illness, the consequences of these actions, and the challenges encountered . In the Model of Urgent Care Help-seeking, Turnbull et al.  describe how decisions about UEC service use are, in part, the product of ‘navigation work’ undertaken to make sense of the availability, accessibility, and acceptability of services. Turnbull et al.’s model  describes how this work is either undertaken alone (individual level navigation work) or with the support of others, such as family or friends (social network level navigation work). The model also describes how time of day and social contexts influence this workload (socio-temporal navigation work) . To understand the extent to which international research has studied this phenomenon, this scoping review aimed to achieve the following: (1) describe research undertaken about choices made by people with cancer about routes to access UEC, (2) characterise how people with cancer decide to use which service in terms of ‘navigation work’, and (3) identify priorities for research.
Scoping reviews aim to map the breadth and depth of research in a field to answer a broad research question . In contrast to systematic reviews, scoping reviews aim to ‘extract the essence of a diverse body of evidence’ (, p.1398) and can be used to clarify key characteristics of a concept and identify knowledge gaps in an emerging field . Building upon preliminary findings , this review aimed to answer the question as follows: what research describes how adults with cancer and their informal caregivers navigate urgent and emergency care? We followed Arksey and O’Malley’s  framework, which comprises five stages: (1) identifying a research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarising, and reporting results. PRISMA guidelines  for scoping reviews were followed.
Identifying relevant studies
We retrieved literature in two stages: (1) electronic database searching and (2) ‘berrypicking’. Our review focused on research published since 2000 due to changes in UEC delivery models that have taken place internationally since the end of the 1990s .
Electronic database search
Search terms were developed from subject headings (e.g. MeSH terms) and informed by key publications, such as Mills et al.  and Turnbull et al. , to capture research describing decisions to use different UEC services. Search terms and subject headings were divided into 4 categories: (1) population (people with cancer or their informal caregivers); (2) concept (help-seeking decisions); (3) context (UEC services); and (4) study (qualitative methods). Electronic databases were searched from January 2000 to May 2021 and included the following: AMED, CINAHL, MEDLINE, PsycInfo (via EBSCO), and Embase (via Ovid). Searches were undertaken June-July 2021. An example electronic database search strategy is displayed in Additional File 1.
We drew upon Booth et al.’s  cluster searching method, applying ‘berrypicking’ strategies to search for potentially relevant papers co-located with or related to papers included via electronic database searching. Techniques reflected four of Bates’  berrypicking strategies: (1) footnote chasing, (2) citation searching, (3) author searching, and (4) area scanning. The procedures followed for each strategy are displayed in Additional File 2.
We used pre-specified eligibility criteria to screen papers for relevance (Table 1). Titles and abstracts of retrieved papers were screened by the principal reviewer (J. D.); where potentially relevant, citations were imported into EndNote™ 20 (Clarivate™) and de-duplicated. Full-text papers that met the eligibility criteria were included for data extraction. Uncertainty about whether a paper met the criteria was resolved by discussion with the review team (R. W. and A. R.). The process is displayed in the PRISMA flowchart  in Fig. 1.
As is convention in scoping reviews , and to ensure findings represented the breadth of research literature, no papers were excluded on the grounds of quality.
Data extraction and analysis
Data were charted using a template developed a priori and with reference to the Model of Urgent Care Help-seeking . A two-stage approach to collating and summarising data was undertaken: (1) descriptive mapping of study, participant, and service characteristics and (2) directed qualitative content analysis of data amenable to interpretation as navigation work.
Stage 1: mapping study, participant, and service characteristics
Data extracted and analysed in stage 1 included the following: publication details (e.g. country of origin); study design and methods (e.g. theories enrolled); patient participant characteristics (e.g. cancer stage); informal caregiver characteristics (e.g. relationship to patient participant); and services studied (e.g. ambulance).
Stage 2: content analysis of author and participant quotations
We used qualitative content analysis  to characterise the work involved in navigating access to UEC services. Author and participant quotations amenable to interpretation as ‘navigation work’ were extracted from the ‘Results’ sections of papers and treated as data. When studies also focussed on help-seeking for other conditions, data were extracted only if clearly relevant to people with cancer. Directed qualitative content analysis was undertaken following the method described by Assarroudi et al. . We theoretically defined coding rules and categories with reference to Turnbull et al.  and piloted the coding matrix on data extracted from five papers which studied five different UEC services. Data were managed in Excel® (Microsoft®) and analysed by the principal reviewer (J. D.); coding decisions were discussed in data analysis meetings with the review team (R. W. and A. R.). Subcategories were developed by comparing and interpreting similarities and differences in meaning across groups of codes  (in pursuit of the latent content ).
Searches identified 21,723 potentially relevant papers. Stage 1 (electronic database searching) identified 19,561 citations, and stage 2 (berrypicking) identified 2162 citations. After de-duplication and screening, 90 full-text papers were assessed for relevance, of which 18 studies [29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46] met the eligibility criteria and were included for data extraction (Table 2).
Characteristics of studies, participants, and services
The majority of studies were conducted in Europe (n = 12/18) [30, 32,33,34,35, 37,38,39, 41,42,43, 46] and North America (n = 5/18) [29, 31, 40, 44, 45], with one  originating from Australia. Most European studies (n = 10/12) [32, 33, 35, 37,38,39, 41,42,43, 46] were conducted in the United Kingdom (UK); two studies [30, 34] originated from Denmark. North American studies were conducted in the United States (US) (n = 3/18) [31, 44, 45] and Canada (n = 2/18) [29, 40]. Most studies (n = 14/18) [29,30,31,32,33,34,35,36,37,38,39,40,41,42] were published after 2014. Almost all reported qualitative studies (n = 16/18) [29,30,31, 33,34,35,36,37,38,39, 41,42,43,44,45,46] with one  reporting a secondary analysis of another included paper by the same authors. The remaining papers (n = 2/18) [32, 40] used mixed methods. Most qualitative studies (n = 14/16) used qualitative description; one paper reported a phenomenological study , whereas the other  reported a constructivist grounded theory approach. Of the mixed methods studies, one described using a concurrent triangulation design , while the other  did not make the design explicit. Both used qualitative descriptive methods in the qualitative component [32, 40]. Many of the papers (n = 13/18) did not explicitly enrol theory; theories and conceptual frameworks enrolled by the remaining (n = 5/18) studies were the following: ‘Model of Healthcare Utilization’ , ‘Burden of Treatment Theory’ , ‘Cumulative Complexity Model’ , ‘Model of Emergency Department Use’ , and the ‘Utilization Process Model’ .
Characteristics of 339 people with cancer who had used UEC were described by the 18 studies [29,30,31,32,33,34,35,36,37,38,39,40,41,42,43,44,45,46]. Type of cancer was specified for over two-thirds of patient participants (n = 230/339) [29,30,31,32,33,34,35,36,37,38,39,40,41,42]. Most patient participants had solid cancers (n = 192/230) [29,30,31,32,33,34,35,36,37,38,39,40, 42]; over one-third (n = 67/192) [29, 31, 32, 35, 36, 38, 39] had lung cancer, with breast (n = 32/192) [29,30,31, 34, 37, 40, 42] and lower gastrointestinal tract (n = 19/192) [29, 30, 34, 35, 40, 42] cancers being the next most common diseases. Only 38 patient participants across five studies [29, 36, 38, 40, 41] had haematological malignancies. Cancer stage was made explicit for all participants in 11 studies [30, 34,35,36,37,38,39, 43,44,45,46] representing approximately two-thirds of patient participants (n = 233/339); almost all (n = 217/233) had advanced cancer [29,30,31, 33,34,35,36,37,38,39, 42,43,44,45,46]. A minority were described as receiving anticancer treatment (n = 161/339) by half of studies included [29, 31, 32, 35, 37, 39,40,41, 43]. Treatment provided was specified for more than half (n = 101/161) of these participants [29, 32, 35, 37, 39, 41, 43]; however, only five studies [31, 32, 37, 40, 41] explicitly focussed on patients’ decisions and experiences during anticancer treatment. Where specified, chemotherapy was the dominant (n = 81/101) treatment modality [29, 35, 37, 39, 41, 43]; 13 patient participants had received immunotherapy , and seven had received radiotherapy . For one paper , data extraction about anticancer treatment modality was limited by the way participant characteristics were reported. One study  recruited participants (n = 5/339) with comorbidities; however, this was not the focus.
Most studies (n = 14/18) [29, 30, 33,34,35,36,37,38,39, 41,42,43, 45, 46] recruited informal caregivers (n = 166). For three papers [33, 39, 45], it was largely unclear whether participants were informal caregivers of people with cancer or other diseases; this limited data extraction from these papers. Four studies did not recruit informal caregivers [31, 32, 40, 44]. Informal caregivers’ relationships to patient participants were specified for fewer than half (n = 76/166) of caregivers about whom data were extracted [29, 30, 33, 34, 36, 37, 39, 41, 43, 45, 46]. The most frequently reported relationship to patients was spouses or partners (n = 55/76) [29, 30, 33, 34, 36, 37, 39, 41, 43, 45, 46], followed by grown-up children (n = 8/76), [29, 30, 34, 36, 43], and parents (n = 5/76) [29, 36, 37]. There were no dedicated studies of the help-seeking experiences of informal caregivers.
Most studies (n = 12/18) [29,30,31, 33, 34, 36, 38, 40, 42, 44,45,46] focussed on decisions to use a single UEC service. The majority (n = 8/12) [29, 31, 33, 36, 38, 40, 44, 45] studied help-seeking from emergency departments (ED); a smaller number focussed on specialist emergency helplines (n = 2/12) [30, 34] and out-of-hours primary care services (n = 2/12) [42, 46]. Two studies [35, 39] focussed on the events leading up to emergency hospital admission from various routes; however, most participants had used a single service: a specialist emergency helpline  or an ED . Three studies [32, 37, 41] focussed on the decision to report symptoms suggestive of anticancer treatment toxicity without specific focus on individual UEC services. Of UEC services used by patients in these studies, most had contacted [32, 41], or discussed decisions with reference to , a specialist emergency helpline. None focussed on non-use of services, and only one paper  studied help-seeking from a UEC system.
Directed qualitative content analysis
Six subcategories reflecting the navigation work undertaken at individual (‘Subcategory 1: making decisions with, and seeking help from, specialists’, ‘Subcategory 2: seeking safety’, ‘Subcategory 3: positioning to access the desired treatment’, ‘Subcategory 4: negotiating tortuous pathways to help’), social network (‘Subcategory 5: making decisions in collaboration with caregivers’), and socio-temporal (‘Subcategory 6: managing isolation from services and social networks’) levels were identified. Included papers have been cited as source documents from which data were extracted, condensed, and interpreted to develop groups of codes for each subcategory.
Subcategory 1: making decisions with, and seeking help from, specialists
People preferred to be guided by specialists whom they knew and trusted [31, 35, 37, 38, 43]. Familiar clinicians from cancer and palliative care were consulted as part of the decision to use UEC [31, 38, 40, 45]. People with cancer were directed to UEC on the advice of specialists whom they contacted in the first instance [29, 31, 33, 35, 38, 40, 45] or used prior verbal and written instructions from their cancer centre to choose which service to use [30, 34, 36, 38, 39]:
All these instructions are basically on the card I’ve got. It tells you to go to emergency once your temperature gets up over 38. (Patient participant; ED , p.442)
They often considered specialists the only safe option from whom to seek help [30, 33, 34, 43], with a perceived lack of cancer-related expertise deterring many from using non-specialist UEC [31, 46]. Familiarity with their specialist team meant that some deferred seeking help until routine clinic appointments, even when specialist emergency helplines were available [32, 37]. Ultimately, attending the ED was a last resort when they failed to reach specialists for advice [29, 40], when community care was deemed unviable [36, 38, 39, 44], or when cancer-specific UEC was unavailable [29, 33, 36].
Subcategory 2: seeking safety
Fear and anxiety (provoked by uncontrolled symptoms or uncertainty about which course of action to take) influenced which services were selected [31, 40, 46]. People with cancer chose to attend ED when faced with severe symptoms [33, 40, 44], and many were motivated by the comfort and safety they found in the hospital environment [31, 36, 38, 46]:
Here [in the hospital], I’m safe [if] something happens. (Patient participant; ED , p.e1295)
Feeling safe at, and trust in, the cancer centre where they received treatment provoked help-seeking from UEC aligned to these institutions [36, 38]. Services were chosen to share the burden of responsibility for self-management [34, 38], and people sought reassurance from specialists to feel safe when working to manage deteriorating symptoms at home [30, 31, 34].
Subcategory 3: positioning to access the desired treatment
People with cancer sought help from services with clear objectives in mind; services were selected to support symptom self-management [31, 32, 34, 35] or, when faced with deterioration, to provide rapid symptom control [29, 38, 39, 42]. Previous experiences of cancer-related UEC influenced re-use (or not) of services [37, 39, 40, 42, 46]. Symptoms and previous supportive treatment guided service reselection with the intention of receiving specific interventions again [29, 45]. Seeking help from services that involved multiple stages and re-explanation to multiple professionals was burdensome and avoided where possible [33, 38, 42, 43, 46]:
… they would have to go through someone else to go through someone else (Researcher: Mmm) do you know what … I wouldn’t want anything like that. (Patient participant; ED  , p.7)
People bypassed parts of the UEC system that would result in unnecessary work, either because utilising alternative services was perceived as futile [38, 46] or to seek help from specialists via unofficial channels [38, 43]. Indeed, they positioned their help-seeking to achieve onward care as much as initial symptom control; people with cancer chose to attend ED as a way of brokering access not only to a hospital admission [29, 36, 38] but also to cancer wards [29, 36].
Subcategory 4: negotiating tortuous pathways to help
Action was taken following careful appraisal of a range of options [33, 38, 39, 43]. For many, the path to obtaining help was convoluted and characterised by clusters of escalating contacts with (often multiple) services [33, 34, 36, 38, 43]:
I phoned the daughter up and told her what had happened … she said ‘oh, hold on I'll be round’ … so she said ‘I better ring up, 111, just to get a bit of advice’, so, she phoned them … they said ‘well we think he better go to the local hospital’, so that's how they got the ambulance (Patient participant; ED  , p.4)
Contacting one service often resulted in being given more navigation work to do, either by being asked to select another service from which to obtain onward treatment [35, 39, 45] or to ‘phone back in the morning’ ( , p.7) if telephone-delivered services could not manage the problem out-of-hours [32, 46]. Over time, many people with cancer had to learn how UEC services were organised to negotiate their way through the system effectively [33, 46].
Subcategory 5: making decisions in collaboration with caregivers
People with cancer and their informal caregivers often worked together [31, 37, 39] but deciding when to use, and initiating contact with, UEC was often led by caregivers [31, 33, 38, 39, 42, 43, 46]. Navigation work was sometimes a collaborative effort between patients, their caregivers, and community  or pre-hospital  practitioners. In the event of serious illness or brisk deterioration, decisions were taken by caregivers on patients’ behalf [34, 35, 46]. However, decisions about the need to use UEC often precipitated patient-caregiver conflict; caregivers applied increasing pressure if patients minimised symptoms or delayed seeking help [31, 37, 38]. Indeed, caregivers sometimes overrode patients’ decisions by initiating contact with UEC services against their wishes if perceived to be making an unwise choice [31, 41, 43]:
The sicker he gets the less he wants any intervention, but I now know that I have to quickly overrule him. (Caregiver participant; specialist emergency helpline , p.2690)
Subcategory 6: managing isolation from services and social networks
Deciding which service to use was influenced by the isolation people with cancer felt when facing deterioration alone [30, 43]. Distant family members were contacted and converged on patients to reduce the burden of accessing UEC [31, 33]. For caregivers however, the potential negative impact on patients that travelling to obtain help may incur was carefully considered when deciding which service to use but also constituted a burden [34, 43, 46]:
She’s suffering the pain and I am stressing, and I am thinking do I get in the car? Do I create more pain? You know, it’s all these sorts of things that go through your mind. (Caregiver participant; out-of-hours service , p.174-175)
Unfamiliarity with out-of-hours systems made decision-making harder; the unavailability of specialists made deciding which service to use more difficult [40, 43]. During this period, people weighed up whether to wait until in-hours services resumed [40, 46] and accessed emergency care overnight and at weekends when no alternative remained [29, 40].
This scoping review aimed to map what qualitative research exists about decisions to use UEC by people with cancer. It identified a small body of research, homogenous in terms of the following: (1) design and methods used, (2) patient populations recruited, and (3) services studied. The review also sought to characterise the ‘navigation work’ undertaken by people with cancer and their informal caregivers. It has also identified areas that would benefit from further research.
The focus of research to date has been about help-seeking by people with advanced cancer, not people receiving anticancer treatment. A minority of studies [32, 37, 41] focussed on and were explicit about the anticancer treatment received for all participants, the majority of whom were treated with chemotherapy. This is significant as the processes of care associated with planning and delivering anticancer treatment, and symptoms and trajectories of complications, differ by treatment modality. Our understanding of how these factors might influence decisions to use UEC (or not) is limited by the evidence. Furthermore, there is a surprising lack of focus on the sequelae of advanced cancer known to necessitate emergency care. For example, we could only identify one instance  where a patient was explicitly described as seeking help for metastatic spinal cord compression. No studies focussed on the decisions to use UEC by people with cancer who were multi-morbid. Evidence suggests this population perceive healthcare systems to be fragmented and difficult to navigate  and experience convoluted pathways through acute care . Further research that focuses on the decisions and experiences of these patient groups is needed.
Individual level navigation work
Findings from the content analysis suggest navigating UEC entails different types of work for people with cancer compared to other groups of patients (‘Subcategory 1: making decisions with, and seeking help from, specialists’, ‘Subcategory 2: seeking safety’, ‘Subcategory 3: positioning to access the desired treatment’, ‘Subcategory 4: negotiating tortuous pathways to help’). Our findings show people with cancer prefer to seek help from cancer and palliative care services to whom they are known and work hard to access these via UEC. This contrasts with previous research  which has shown people with long-term conditions (excluding cancer) select services for their perceived technological capability rather than care delivered by familiar clinicians. Studies continue to demonstrate the importance of trusting relationships with care providers to people with cancer [50,51,52], and the findings of our review suggest the concept of ‘being in safe hands’ (, p.1538) during scheduled cancer treatment may influence which UEC service is selected when acutely unwell. In comparison with the Model of Urgent Care Help-seeking , our findings suggest acceptability of services is more important than their availability, with acceptability contingent on feeling safe at, and trust in, services’ ability to meet the unique needs of people with cancer.
Similarly to Turnbull et al. , decisions about which service to use were ‘recursive’ (i.e. shaped by prior help-seeking experiences). Findings from our review suggest decisions are informed by experiences since a diagnosis of cancer; however, recent evidence [54, 55] suggests frequent ED attendances prior to a cancer diagnosis are associated with increased ED use following diagnosis. Further qualitative work is needed to explore which experiences, both prior to and following cancer diagnosis, influence decisions about future UEC use and why. In contrast to the Model of Urgent Care Help-seeking , our findings show decisions made by people with cancer are predicated on detailed appraisals of their clinical need rather than convenience. Seeking help from the ‘right’ service constitutes hard work; people with cancer are keen to avoid, but often face, burdensome access procedures, which they attempt to circumvent by bypassing parts of the system. This is significant as international evidence has largely described ‘bypassing’ in terms of avoiding primary care when choosing secondary care [56,57,58] and suggests systems, and the work required to navigate them, may be more complex for people with cancer. However, our understanding of how people with cancer make sense of the UEC landscape is limited by a literature that has largely studied services in isolation.
Social network level navigation work
Our review shows how informal caregivers perform a dual role in help-seeking (‘Subcategory 5: making decisions in collaboration with caregivers’). Caregivers not only support people with cancer to navigate UEC but often take charge of this workload. This finding contrasts with those of Turnbull et al.  who describe how navigation work by the general population predominantly takes place at an individual level, with relational network members consulted as part of, but not responsible for, decision-making. It also contrasts with findings from studies of help-seeking for complications of long-term conditions in which caregivers are largely described as fulfilling encouraging and facilitative roles [59,60,61]; acting without patients’ permission was rarer . It is therefore significant that this phenomenon has been captured by the small body of research identified by this review. Evidence suggests informal caregivers of people with cancer act as both ‘advocate’ and ‘protector’ (, p.803), assuming responsibility for decisions about  and negotiating access to care  on patients’ behalf. However, support for informal caregivers to learn how to navigate cancer health systems is lacking ; further, dedicated exploration in relation to UEC is needed.
Navigation work by people with cancer also appears to be influenced by both time of day and social contexts (‘Subcategory 6: managing isolation from services and social networks’). Unfamiliarity with the UEC system out of hours and unavailability of usual support structures made deciding whether to seek help, and which service to use, more difficult. Difficulty relating to prior information at the point of deterioration confounded decision-making, a finding echoed by wider literature [12, 67]. A decade ago, a report from the UK  highlighted the need to embed personalised contingency planning into the routine care of people at risk of complications of cancer and its treatment. To the best of our knowledge, how people with cancer and their informal caregivers prepare for complications that necessitate contact with UEC remains an area that has been unexplored by dedicated research. Our findings reinforce the need to understand how preparing for acute illness might influence the work of navigating UEC.
Recommendations for research
This scoping review has identified a small body of literature and significant knowledge gaps. Although policy and practice would benefit from high-quality, theory-led studies that explore any aspect of UEC use by people with cancer, based on findings from this review, we have outlined five areas which should be prioritised in Table 3.
Scoping reviews are time-consuming, resource-intensive projects and involve collating and interpreting large volumes of data . For pragmatic reasons, the process of identifying, selecting, and extracting data from studies was undertaken by a single reviewer (J. D.). Multiple reviewers may have mitigated against potentially relevant papers and data being excluded, a commonly reported limitation of scoping reviews . Time and funding constraints precluded translation of articles not published in English, which may also have resulted in relevant articles being excluded. The relatively small number of, and the richness of data amenable to interpretation as navigation work from, studies published outside of the UK precluded a comparative analysis by country. In addition, no studies from low- or middle-income countries were eligible for inclusion. As such, our findings and research recommendations may not be relevant to all international contexts.
This review scoped research studies pertaining to decisions about using UEC by people with cancer and their informal caregivers that have used qualitative and mixed methods. It has identified and summarised a small amount of narrowly focussed research, namely studies of decisions to use EDs by people with advanced cancer who are not receiving anticancer treatment. This review suggests navigating UEC constitutes hard work and is qualitatively different for people with cancer. Our understanding about ways in which we might prepare and support patients to effectively access these services is constrained by the evidence base. There is a need to progress research in this area.
Availability of data and materials
Data collated and summarised from this review are available from the corresponding author upon reasonable request.
Urgent and emergency care
Lash RS, Bell JF, Reed SC, Poghosyan H, Rodgers J, Kim KK, Bold RJ, Joseph JG. A systematic review of emergency department use among cancer patients. Cancer Nurs. 2017;40(2):135–44. https://doi.org/10.1097/NCC.0000000000000360.
Thoresen CK, Sandvik H, Hunskaar S. Cancer patients' use of primary care out-of-hours services: a cross-sectional study in Norway. Scand J Prim Health Care. 2016;34(3):232–9. https://doi.org/10.1080/02813432.2016.1207140.
Chitnis X, Steventon A, Glaser A, Bardsley M. Use of health and social care by people with cancer. Nuffield Trust. 2014; https://www.nuffieldtrust.org.uk/files/2017-01/social-care-for-cancer-survivors-full-report-web-final.pdf.
Caterino JM, Adler D, Durham DD, Yeung SJ, Hudson MF, Bastani A, Bernstein SL, Baugh CW, Coyne CJ, Grudzen CR, Henning DJ, Klotz A, Madsen TE, Pallin DJ, Reyes-Gibby CC, Rico JF, Ryan RJ, Shapiro NI, Swor R, Venkat A, Wilson J, Thomas CR Jr, Bischof JJ, Lyman GH. Analysis of diagnoses, symptoms, medications, and admissions among patients with cancer presenting to emergency departments. JAMA Netw Open. 2019;2(3):e190979. https://doi.org/10.1001/jamanetworkopen.2019.0979.
Todd KH. Emergency Cancer Care: inaugural editorial. Emerg Cancer Care. 2022;1(1). https://doi.org/10.1186/s44201-021-00001-2.
Mills SEE, Geneen LJ, Buchanan D, Guthrie B, Smith BH. Factors associated with unscheduled care use by cancer decedents: a systematic review with narrative synthesis. BMJ Support Palliat Care. 2020. https://doi.org/10.1136/bmjspcare-2020-002410.
Prince RM, Powis M, Zer A, Atenafu EG, Krzyzanowska MK. Hospitalisations and emergency department visits in cancer patients receiving systemic therapy: systematic review and meta-analysis. Eur J Cancer Care. 2019;28(1):e12909. https://doi.org/10.1111/ecc.12909.
Vandyk AD, Harrison MB, Macartney G, Ross-White A, Stacey D. Emergency department visits for symptoms experienced by oncology patients: a systematic review. Support Care Cancer. 2012;20(8):1589–99. https://doi.org/10.1007/s00520-012-1459-y.
Kirkland SW, Garrido-Clua M, Junqueira DR, Campbell S, Rowe BH. Preventing emergency department visits among patients with cancer: a scoping review. Support Care Cancer. 2020;28(9):4077–94. https://doi.org/10.1007/s00520-020-05490-1.
White K, Roydhouse J, O’Riordan L, WT. Interventions for reducing the use of adult emergency department services by cancer patients: an evidence check rapid review brokered by the Sax Institute for the Cancer Institute NSW. Cancer Institute New South Wales; 2013. https://www.saxinstitute.org.au/wp-content/uploads/Interventions-for-reducing-the-use-of-adult-Emergency-Department-services-by-cancer-patients.pdf
Henson LA, Gao W, Higginson IJ, Smith M, Davies JM, Ellis-Smith C, Daveson BA. Emergency department attendance by patients with cancer in their last month of life: a systematic review and meta-analysis. J Clin Oncol. 2015;33(4):370–6. https://doi.org/10.1200/JCO.2014.57.3568.
Shelburne N, Simonds NI, Jensen RE, Brown J. Cancer-related emergency and urgent care: expanding the research agenda. Emerg Cancer Care. 2022;1(4). https://doi.org/10.1186/s44201-022-00005-6.
Corbin J, Strauss A. Managing chronic illness at home: three lines of work. Qual Sociol. 1985;8(3):224–47. https://doi.org/10.1007/BF00989485.
Turnbull J, McKenna G, Prichard J, Rogers A, Crouch R, Lennon A, Pope C. Sense-making strategies and help-seeking behaviours associated with urgent care services: a mixed-methods study. Health Serv Deliv Res. 2019;7(26). https://doi.org/10.3310/hsdr07260.
Turnbull J, Pope C, Prichard J, McKenna G, Rogers A. A conceptual model of urgent care sense-making and help-seeking: a qualitative interview study of urgent care users in England. BMC Health Serv Res. 2019;19(481). https://doi.org/10.1186/s12913-019-4332-6.
Levac D, Colquhoun H, O'Brien KK. Scoping studies: advancing the methodology. Implementation Sci. 2010;5(69). https://doi.org/10.1186/1748-5908-5-69.
Davis K, Drey N, Gould D. What are scoping studies? A review of the nursing literature. Int J Nurs Stud. 2009;46(10):1386–400. https://doi.org/10.1016/j.ijnurstu.2009.02.010.
Munn Z, Peters MDJ, Stern C, Tufanaru C, McArthur C, Aromataris E. Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach. BMC Med Res Methodol. 2018;18(143). https://doi.org/10.1186/s12874-018-0611-x.
Defty J, Wagland R, Richardson A. Understanding the urgent and emergency care sense-making and help-seeking work undertaken by people with cancer and members of their social networks: a conceptually-framed scoping review. Poster presentation at British Psychosocial Oncology Society 2022 Conference, 28-29; 2022. Virtual conference. https://doi.org/10.1002/pon.5972.
Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Methodol. 2005;8:19–32. https://doi.org/10.1080/1364557032000119616.
Tricco AC, Lillie E, Zarin W, O'Brien KK, Colquhoun H, Levac D, Moher D, Peters MDJ, Horsley T, Weeks L, Hempel S, Akl EA, Chang C, McGowan J, Stewart L, Hartling L, Aldcroft A, Wilson MG, Garritty C, Lewin S, Godfrey CM, Macdonald MT, Langlois EV, Soares-Weiser K, Moriarty J, Clifford T, Tunçalp Ö, Straus SE. PRISMA Extension for Scoping Reviews (PRISMA-ScR): checklist and explanation. Ann Intern Med. 2018;169(7):467–73. https://doi.org/10.7326/M18-0850.
Baier N, Geissler A, Bech M, Bernstein D, Cowling TE, Jackson T, van Manen J, Rudkjøbing A, Quentin W. Emergency and urgent care systems in Australia, Denmark, England, France, Germany and the Netherlands - analyzing organization, payment and reforms. Health Policy. 2019;123(1):1–10. https://doi.org/10.1016/j.healthpol.2018.11.001.
Booth A, Harris J, Croot E, Springett J, Campbell F, Wilkins E. Towards a methodology for cluster searching to provide conceptual and contextual "richness" for systematic reviews of complex interventions: case study (CLUSTER). BMC Med Res Methodol. 2013;13(118). https://doi.org/10.1186/1471-2288-13-118.
Bates MJ. The design of browsing and berrypicking techniques for the online search interface. Online Rev. 1989;13(5):407–24. https://doi.org/10.1108/eb024320.
Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, Shamseer L, Tetzlaff JM, Akl EA, Brennan SE, Chou R, Glanville J, Grimshaw JM, Hróbjartsson A, Lalu MM, Li T, Loder EW, Mayo-Wilson E, McDonald S, McGuinness LA, Stewart LA, Thomas J, Tricco AC, Welch VA, Whiting P, Moher D. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. https://doi.org/10.1136/bmj.n71.
O'Brien KK, Colquhoun H, Levac D, Baxter L, Tricco AC, Straus S, Wickerson L, Nayar A, Moher D, O'Malley L. Advancing scoping study methodology: a web-based survey and consultation of perceptions on terminology, definition and methodological steps. BMC Health Serv Res. 2016;16(305). https://doi.org/10.1186/s12913-016-1579-z.
Assarroudi A, Heshmati Nabavi F, Armat MR, Ebadi A, Vaismoradi M. Directed qualitative content analysis: the description and elaboration of its underpinning methods and data analysis process. J Res Nurs. 2018;23(1):42–55. https://doi.org/10.1177/1744987117741667.
Graneheim UH, Lindgren BM, Lundman B. Methodological challenges in qualitative content analysis: a discussion paper. Nurse Educ Today. 2017;56:29–34. https://doi.org/10.1016/j.nedt.2017.06.002.
Mostarac I, Barbera L, Sussman J, Dainty K, Wu L, Ratcliffe J, Atzema CL. I'm here because I was told to come: a study of cancer patients' reasons for attending the emergency department. Support Care Cancer. 2021;29(11):6565–78. https://doi.org/10.1007/s00520-021-06215-8.
Jørgensen L, Jacobsen HR, Pedersen B, Uhrenfeldt L. Calling an oncological emergency telephone to seek advice: an interview study. Cancer Nurs. 2021;44(2):98–105. https://doi.org/10.1097/NCC.0000000000000778.
Kaufmann TL, Rendle KA, Aakhus E, Nimgaonkar V, Shah A, Bilger A, Gabriel PE, Trotta R, Braun J, Shulman LN, Bekelman JE, Barg FK. Views from patients with cancer in the setting of unplanned acute care: informing approaches to reduce health care utilization. JCO Oncol Pract. 2020;16(11):e1291–303. https://doi.org/10.1200/OP.20.00013.
Jamieson L, Forster MD, Zaki K, Mithra S, Alli H, O'Connor A, Patel A, Wong ICK, Chambers P. Immunotherapy and associated immune-related adverse events at a large UK centre: a mixed methods study. BMC Cancer. 2020;20(1):743. https://doi.org/10.1186/s12885-020-07215-3.
Green E, Shaw SE, Harris T. 'They shouldn't be coming to the ED, should they?' A qualitative study of why patients with palliative care needs present to the emergency department. BMJ Support Palliat Care. 2019;9(4):e29. https://doi.org/10.1136/bmjspcare-2015-000999.
Pedersen B, Uhrenfeldt L, Jacobsen HR, Jørgensen L. The role of responsibility in oncological emergency telephone calls. Nurs Ethics. 2019;26(7-8):2071–84. https://doi.org/10.1177/0969733019839214.
Chen H, Johnson M, Boland E, Seymour J, Macleod U. Emergency admissions and subsequent inpatient care through an emergency oncology service at a tertiary cancer centre: service users' experiences and views. Support Care Cancer. 2019;27(2):451–60. https://doi.org/10.1007/s00520-018-4328-5.
Philip J, Remedios C, Breen S, Weiland T, Willenberg L, Boughey M, Jelinek G, Lane H, Marck C, Weil J. The experiences of patients with advanced cancer and caregivers presenting to emergency departments: a qualitative study. Palliat Med. 2018;32(2):439–46. https://doi.org/10.1177/0269216317735724.
Oakley C, Taylor C, Ream E, Metcalfe A. Avoidant conversations about death by clinicians cause delays in reporting of neutropenic sepsis: grounded theory study. Psychooncology. 2017;26(10):1505–12. https://doi.org/10.1002/pon.4320.
Henson LA, Higginson IJ, Daveson BA, Ellis-Smith C, Koffman J, Morgan M, Gao W. BuildCARE. 'I'll be in a safe place': a qualitative study of the decisions taken by people with advanced cancer to seek emergency department care. BMJ Open. 2016;6(11):e012134. https://doi.org/10.1136/bmjopen-2016-012134.
Karasouli E, Munday D, Bailey C, Staniszewska S, Hewison A, Griffiths F. Qualitative critical incident study of patients' experiences leading to emergency hospital admission with advanced respiratory illness. BMJ Open. 2016;6(2):e009030. https://doi.org/10.1136/bmjopen-2015-009030.
Nguyen BL, Tremblay D, Mathieu L, Groleau D. Mixed method exploration of the medical, service-related, and emotional reasons for emergency room visits of older cancer patients. Support Care Cancer. 2016;24(6):2549–56. https://doi.org/10.1007/s00520-015-3058-1.
Clarke RT, Bird S, Kakuchi I, Littlewood TJ, van Hamel Parsons V. The signs, symptoms and help-seeking experiences of neutropenic sepsis patients before they reach hospital: a qualitative study. Support Care Cancer. 2015;23(9):2687–94. https://doi.org/10.1007/s00520-015-2631-y.
Adam R, Clausen MG, Hall S, Murchie P. Utilising out-of-hours primary care for assistance with cancer pain: a semi-structured interview study of patient and caregiver experiences. Br J Gen Pract. 2015;65(640):e754–60. https://doi.org/10.3399/bjgp15X687397.
Richards SH, Winder R, Seamark C, Seamark D, Avery S, Gilbert J, Barwick A, Campbell JL. The experiences and needs of people seeking palliative health care out-of-hours: a qualitative study. Prim Health Care Res Dev. 2011;12(2):165–78. https://doi.org/10.1017/S1463423610000459.
Grudzen CR, Stone SC, Mohanty SA, Asch SM, Lorenz KA, Torres JM, Morrison M, Ortiz JM, Timmermans S. "I want to be taking my own last breath": patients' reflections on illness when presenting to the emergency department at the end of life. J Palliat Med. 2011;14(3):293–6. https://doi.org/10.1089/jpm.2010.0306.
Smith AK, Schonberg MA, Fisher J, Pallin DJ, Block SD, Forrow L, McCarthy EP. Emergency department experiences of acutely symptomatic patients with terminal illness and their family caregivers. J Pain Symptom Manage. 2010;39(6):972–81. https://doi.org/10.1016/j.jpainsymman.2009.10.004.
Worth A, Boyd K, Kendall M, Heaney D, Macleod U, Cormie P, Hockley J, Murray S. Out-of-hours palliative care: a qualitative study of cancer patients, carers and professionals. Br J Gen Pract. 2006;56(522):6–13 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1821404/pdf/bjpg56-6.pdf.
Corbett T, Lee K, Cummings A, Calman L, Farrington N, Lewis L, Young A, Richardson A, Foster C, Bridges J. Self-management by older people living with cancer and multi-morbidity: a qualitative study. Support Care Cancer. 2022;30(6):4823–33. https://doi.org/10.1007/s00520-022-06892-z.
Chen H, Walabyeki J, Johnson M, Boland E, Seymour J, Macleod U. An integrated understanding of the complex drivers of emergency presentations and admissions in cancer patients: qualitative modelling of secondary-care health professionals' experiences and views. PLoS One. 2019;14(5):e0216430. https://doi.org/10.1371/journal.pone.0216430.
Hunter C, Chew-Graham C, Langer S, Stenhoff A, Drinkwater J, Guthrie E, Salmon P. A qualitative study of patient choices in using emergency health care for long-term conditions: the importance of candidacy and recursivity. Patient Educ Couns. 2013;93(2):335–41. https://doi.org/10.1016/j.pec.2013.06.001.
Blödt S, Müller-Nordhorn J, Seifert G, Holmberg C. Trust, medical expertise and humaneness: a qualitative study on people with cancer' satisfaction with medical care. Health Expect. 2021;24(2):317–26. https://doi.org/10.1111/hex.13171.
Niranjan SJ, Wallace A, Williams BR, Turkman Y, Williams CP, Bhatia S, Knight S, Rocque GB. Trust but verify: exploring the role of treatment-related information and patient-physician trust in shared decision making among patients with metastatic breast cancer. J Cancer Educ. 2020;35(5):885–92. https://doi.org/10.1007/s13187-019-01538-x.
Ernstmann N, Nakata H, Meurer L, Weiß J, Geiser F, Vitinius F, Petermann-Meyer A, Burgmer M, Sonntag B, Teufel M, Karger A. Participative development and evaluation of a communication skills-training program for oncologists-patient perspectives on training content and teaching methods. Support Care Cancer. 2022;30(3):1957–66. https://doi.org/10.1007/s00520-021-06610-1.
Appleton L, Poole H, Wall C. Being in safe hands: patients' perceptions of how cancer services may support psychological well-being. J Adv Nurs. 2018;74(7):1531–43. https://doi.org/10.1111/jan.13553.
Decker K, Lambert P, Galloway K, Bucher O, Pitz M, Goldenberg B, Singh H, Kristjanson M, Fatoye T, Bow EJ. Predictors of urgent cancer care clinic and emergency department visits for individuals diagnosed with cancer. Curr Oncol. 2021;28(3):1773–89. https://doi.org/10.3390/curroncol28030165.
Hong AS, Nguyen DQ, Lee SC, Courtney DM, Sweetenham JW, Sadeghi N, Cox JV, Fullington H, Halm EA. Prior frequent emergency department use as a predictor of emergency department visits after a new cancer diagnosis. JCO Oncol Pract. 2021;17(11):e1738–52. https://doi.org/10.1200/OP.20.00889.
van der Linden MC, Lindeboom R, van der Linden N, van den Brand CL, Lam RC, Lucas C, de Haan R, Goslings JC. Self-referring patients at the emergency department: appropriateness of ED use and motives for self-referral. Int J Emerg Med. 2014;7(28). https://doi.org/10.1186/s12245-014-0028-1.
Aoki T, Yamamoto Y, Ikenoue T, Kaneko M, Kise M, Fujinuma Y, Fukuhara S. Effect of patient experience on bypassing a primary care gatekeeper: a multicenter prospective cohort study in Japan. J Gen Intern Med. 2018;33(5):722–8. https://doi.org/10.1007/s11606-017-4245-1.
Li C, Chen Z, Khan MM. Bypassing primary care facilities: health-seeking behavior of middle age and older adults in China. BMC Health Serv Res. 2021;21(895). https://doi.org/10.1186/s12913-021-06908-0.
Clark AM, Savard LA, Spaling MA, Heath S, Duncan AS, Spiers JA. Understanding help-seeking decisions in people with heart failure: a qualitative systematic review. Int J Nurs Stud. 2012;49(12):1582–97. https://doi.org/10.1016/j.ijnurstu.2012.05.010.
Quek JS, Tang WE, Chen E, Smith HE. Understanding the journeys of patients with an asthma exacerbation requiring urgent therapy at a primary care clinic. BMC Pulm Med. 2022;22(231). https://doi.org/10.1186/s12890-022-02024-9.
Baillie J, Gill P, Courtenay M. Seeking help for peritoneal dialysis-associated peritonitis: patients' and families' intentions and actions. A mixed methods study. J Adv Nurs. 2021;77(10):4211–25. https://doi.org/10.1111/jan.14969.
Locke ER, Young JP, Battaglia C, Simpson TL, Trivedi R, Simons C, Fortney JC, Hebert P, Swenson ER, Edelman J, Fan VS. Care-seeking and delay of care during COPD exacerbations. NPJ Prim Care Respir Med. 2022;32(7). https://doi.org/10.1038/s41533-022-00269-9.
Ream E, Pedersen VH, Oakley C, Richardson A, Taylor C, Verity R. Informal carers' experiences and needs when supporting patients through chemotherapy: a mixed method study. Eur J Cancer Care. 2013;22(6):797–806. https://doi.org/10.1111/ecc.12083.
Dionne-Odom JN, Ejem D, Wells R, Barnato AE, Taylor RA, Rocque GB, Turkman YE, Kenny M, Ivankova NV, Bakitas MA, Martin MY. How family caregivers of persons with advanced cancer assist with upstream healthcare decision-making: a qualitative study. PLoS One. 2019;14(3):e0212967. https://doi.org/10.1371/journal.pone.0212967.
Mohammed S, Swami N, Pope A, Rodin G, Hannon B, Nissim R, Hales S, Zimmermann C. "I didn't want to be in charge and yet I was": bereaved caregivers' accounts of providing home care for family members with advanced cancer. Psychooncology. 2018;27(4):1229–36. https://doi.org/10.1002/pon.4657.
Thomas TH, Campbell GB, Lee YJ, Roberge MC, Kent EE, Steel JL, Posluszny DM, Arida JA, Belcher SM, Sherwood PR, Donovan HS. Priorities to improve cancer caregiving: report of a caregiver stakeholder workshop. Support Care Cancer. 2021;29(5):2423–34. https://doi.org/10.1007/s00520-020-05760-y.
Warrington L, Holch P, Kenyon L, Hector C, Kozlowska K, Kenny AM, Ziegler L, Velikova G. An audit of acute oncology services: patient experiences of admission procedures and staff utilisation of a new telephone triage system. Support Care Cancer. 2016;24(12):5041–8. https://doi.org/10.1007/s00520-016-3370-4.
Royal College of Physicians, and Royal College of Radiologists. Cancer patients in crisis: responding to urgent needs. Report of a working party. Royal College of Radiologists; 2012 https://www.rcr.ac.uk/system/files/publication/field_publication_files/Cancer_patients_crisis.pdf.
Anderson JK, Howarth E, Vainre M, Humphrey A, Jones PB, Ford TJ. Advancing methodology for scoping reviews: recommendations arising from a scoping literature review (SLR) to inform transformation of children and adolescent mental health services. BMC Med Res Methodol. 2020;20(242). https://doi.org/10.1186/s12874-020-01127-3.
Pham MT, Rajić A, Greig JD, Sargeant JM, Papadopoulos A, McEwen SA. A scoping review of scoping reviews: advancing the approach and enhancing the consistency. Res Synth Methods. 2014;5(4):371–85. https://doi.org/10.1002/jrsm.1123.
The authors would like to thank Kate Walker, Academic Engagement Librarian (Health Sciences and Psychology) at the University of Southampton, for assisting in the development and piloting of the search strategy.
John Defty, Pre-doctoral Clinical Academic Fellow (NIHR300314), received funding from Health Education England/National Institute for Health and Care Research (NIHR) for this research project. Alison Richardson receives funding from the National Institute for Health and Care Research Applied Research Collaboration Wessex. The views expressed in this publication are those of the authors and not necessarily those of the NIHR, NHS or the UK Department of Health and Social Care.
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Defty, J., Wagland, R. & Richardson, A. Understanding the urgent and emergency care navigation work undertaken by people with cancer and their informal caregivers: a conceptually framed scoping review. Emerg Cancer Care 2, 2 (2023). https://doi.org/10.1186/s44201-023-00019-8