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Abstract
Objectives The objective was to map the experiences and needs of patients presenting with symptoms of suspected cancer in the primary care interval (from when they first present to primary care to their first appointment or referral to a secondary or tertiary level healthcare facility).
Design This was a scoping review.
Inclusion criteria Studies or reports written in English which included primary data on the primary care interval experiences and/or needs of adult patients presenting with new symptoms of suspected cancer were eligible. Studies which only included patients with secondary or recurring cancer, conference abstracts and reviews were excluded. No date limits were applied.
Methods The Joanna Briggs Institute method for Scoping Reviews guided screening, report selection and data extraction. At least two independent reviewers contributed to each stage. Medline, CINAHL, PsychInfo, Embase and Web of Science were searched and several grey literature resources. Relevant quantitative findings were qualitised and integrated with qualitative findings. A thematic analysis was carried out.
Results Of the 4855 records identified in the database search, 18 were included in the review, along with 13 identified from other sources. The 31 included studies were published between 2002 and 2023 and most (n=17) were conducted in the UK. Twenty subthemes across four themes (patient experience, interpersonal, healthcare professional (HCP) skills, organisational) were identified. No studies included patient-reported outcome measures. Patients wanted (1) to feel heard and understood by HCPs, (2) a plan to establish what was causing their symptoms, and (3) information about the next stages of the diagnostic process.
Conclusions Scoping review findings can contribute to service planning as the cancer diagnostic pathway for symptomatic presentation of cancer evolves. The effectiveness of this pathway should be evaluated not only in terms of clinical outcomes, but also patient-reported outcomes and experience, along with the perspectives of primary care HCPs.
- Primary Care
- ONCOLOGY
- Patient Satisfaction
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
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STRENGTHS AND LIMITATIONS OF THIS STUDY
Established methodological frameworks were followed.
A comprehensive search strategy was employed across both published literature and grey literature databases.
No publication date restrictions were applied.
Only English language reports were eligible and more UK resources were included in the grey literature search.
In line with scoping review methodology, the quality of the included studies was not assessed.
Introduction
Globally, cancer is among the top three major causes of premature deaths in most countries.1 It is estimated that nearly 10 million deaths occur from cancer yearly.2 Diagnosing cancer at an early stage is important to improve patient outcomes and reduce mortality rates. A prolonged time taken to diagnose cancer can lead to poorer survival and reduced quality of life.3
There are different routes in how cancer is detected and diagnosed within healthcare systems worldwide. Many (high-income) countries have implemented population screening programmes for early detection of cancer.4 However, only a relatively small proportion (<10%) of all adult cancers are detected by recommended preventive screening,5–8 and for most cancer sites, no preventive screening tests are available.9 Cancer diagnosis by emergency presentation is another route to diagnosis. It results when patients seek medical care for severe symptoms or are being investigated for other conditions. The proportion of emergency presentations varies by cancer type, but ranged from 24% to 42.5% in 1 analysis of 8 diagnoses across 6 countries.10
Most patients with initial suspicion of cancer present at primary healthcare facilities,11 and so primary care plays a crucial role in the diagnostic process. Typically, patients with one or more specific symptoms (eg, persistent cough, lump, change in bowel habits) or non-specific symptoms of cancer (eg, fatigue, unexplained weight loss) self-present to their family doctor or general practitioner (GP). These patients are referred to secondary-level or tertiary-level health facilities if further diagnostic workup and treatment is required, sometimes on urgent referral pathways.12–14
Distress is common immediately following a diagnosis of cancer, as well as during or after cancer treatment, and is generally well studied.15 16 Despite patients with cancer, as well as a large number of patients eventually not diagnosed with cancer, experiencing diagnostic uncertainty and potentially several invasive diagnostic procedures, studies on adverse psychological consequences of the diagnostic phase itself are limited.17–19 By investigating patient experience and needs during the diagnostic phase, it may be possible to identify better ways to support patients and mitigate any adverse psychological consequences.
The need for research to assess the key issues in patient experience and needs in the cancer diagnostic pathway has also been highlighted as a gap by the National Institute for Health and Care Excellence.20 We carried out a scoping review to map what is already known about the experiences and needs of patients from when they first present to primary care with symptoms of suspected cancer to their first appointment or referral to a secondary-level or tertiary-level healthcare facility (primary care interval).21 A scoping review was chosen because this topic has not yet been extensively reviewed and scoping reviews can be used to identify and summarise heterogeneous evidence.22 Scoping reviews can also help identify any gaps in current knowledge. The review question was: what are patients’ experiences and needs during the primary care interval of the cancer diagnostic pathway?
Method
A scoping review method was applied using the Joanna Briggs Institute method for Scoping Reviews.23 See online supplemental file 1 for the original protocol. This method is congruent with the scoping review extension to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement, PRISMA extension for Scoping Reviews24 (online supplemental file) and provides a framework through which heterogeneous literature can be brought together to gain an initial understanding of the breadth of the topic. Initial searches were made in September 2022 and updated in April 2023.
Supplemental material
Inclusion and exclusion criteria
Inclusion criteria were studies of any type which included primary data on the experiences and/or needs of adult patients in the primary care interval after presenting with new symptoms of suspected cancer. Studies based in the secondary care setting only or which only included patients with secondary or recurring cancer were excluded, as were conference abstracts and reviews. Only studies written in English were included. No limitations to date of publication were made.
Search strategy and selection
The search strategy was based on the concepts of cancer, diagnosis/detection, patient outcomes and primary care. The following databases were searched: Medline, CINAHL, PsychInfo, Embase and Web of Science. Advanced search strings were developed using within concept terms, combined with the Boolean operator ‘or’ and between concept terms combined with ‘and’. Search strings used both index/Medical Subject Heading (MeSH) terms, when possible, and free text terms within the title and abstract. After developing the search strategy in Medline, minor adaptations were made when necessary for use in the other databases (see online supplemental file 2 for full search strategies). Hand searches of references of any included studies were also carried out, along with searches of papers citing the included studies.
Supplemental material
The search results were managed using Endnote and the Rayyan web application.25 All identified references were saved in Endnote, deduplicated and then exported to Rayyan. All titles and abstracts were screened in Rayyan by two reviewers from a team of three (SJW, HH, SR). Records were only excluded if both reviewers agreed to this. Full-text reviews were also carried out independently by two reviewers from the same team, with any disagreements resolved by the third.
Searches were also conducted on a range of grey literature sources. These were: TRIP Medical Database, Mednar, British Library EThOS, Open Access theses and dissertations, Proquest, Dart Europe, The Institute of Cancer Research, Canadian Breast Cancer Research Alliance Open Access Archive, WHO, UK government website, Macmillan Cancer Support and Cancer Research UK. Only the first hundred hits on each website were reviewed. Reviews were carried out by a single reviewer (SJW/HH/SR), but all reports nominated for inclusion were also checked by a second reviewer (SJW/HH).
Data extraction and analysis
A bespoke Excel data extraction tool was used to extract data. Data were extracted by one reviewer (SJW/HH) and checked by a second reviewer (SJW/HH). Information extracted comprised study characteristics (setting, sample, aims and design), findings related to the review question and both clinical and research recommendations. On inspection of the included studies, thematic analysis was selected as the method to summarise the findings as it has been reported to strengthen the rigour of eventual findings by facilitating the identification and organisation of key themes.26 Relevant quantitative findings were qualitised and then integrated with the qualitative findings.27 Thematic analysis was carried out by four members of the study team (SJW, HH, FM, JA) using Thomas and Harden as a guide.28 Each team member identified themes independently and then the final themes were agreed through discussion. The clinical and research recommendations included in the papers were also summarised.
Patient and public involvement
No patients or public members were involved in the study.
Results
Study selection
As shown in the PRISMA flow chart (figure 1), the database search identified 4855 records. After deduplication and removal of studies which did not meet the inclusion criteria, 18 studies remained.29–46 In the grey literature search, six reports were assessed for inclusion, and three were retained.47–49 Six papers were included following the citation and references search.50–55 Four studies which were already known about were also included.56–59 In total, 31 studies were included in the scoping review, 30 peer-reviewed journal papers29–48 50–59 and 1 thesis.49
Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram.
Study characteristics
Study characteristics (see online supplemental file 3) and findings which directly relate to the review question, along with research and clinical recommendations (see online supplemental file 4) were tabulated. The studies were published between 2002 and 2023. Most (n=17) were conducted in the UK,29–33 35–37 39 41 42 44 47–49 52 57 with four from New Zealand,40 43 51 54 two from Australia34 55 and one each from Canada,50 Denmark,38 Spain,46 Sweden59 and the USA.58 Two studies used data from three countries—Denmark, Sweden and England56 and the UK, Australia and New Zealand45—while a third study used data from two countries, the Netherlands and the UK.53 Sample sizes ranged between 12 and 3329, and a wide range of cancer types was represented across the studies. Only nine studies reported on ethnicity.32 37 40 42–44 48 49 54 All studies were cross-sectional and most (n=24) used qualitative methodology,30–34 36 37 39–43 46 48–53 55–59 with six mixed-method studies29 35 44 45 47 54 and one quantitative study.38 In their 2018 paper, Howell et al analysed findings from 20 patients with myeloma.57 The same 20 patients were also included in their 2020 paper, along with an additional 30 patients with non-Hodgkin's lymphoma and 5 patients with Hodgkin lymphoma.52
Findings
To address the research question, ‘‘what are patients’ experiences and needs during the primary care interval of the cancer diagnostic pathway?’, qualitative findings extracted from the studies were organised into 4 themes and 20 subthemes: patient experience (five subthemes), interpersonal (six subthemes), healthcare professional (HCPs) skills (four subthemes) and organisational (five subthemes). The themes were initially selected based on broad categorisations related to patients, HCPs and healthcare organisational factors; subthemes were inducted from the data. Themes and subthemes were refined throughout analysis in response to intermediate factors (such as communication between patients and HCPs) and ‘unanticipated insights’.26 Tables 1–4 summarise the subthemes in each of the four themes, including a description and illustrative patient quotes. The following provides a narrative summary.
Patient experience theme
Interpersonal theme
Healthcare professional skills theme
Organisational theme
Patient experience
Patients experienced a range of emotions during the primary care interval, but anxiety was commonly reported, as they waited for their secondary care appointment. This could be mitigated to some extent if patients had adequate information.29 35–38 42 44 46 48–50 53 59 Informational needs were more often related to process (eg, next steps, types of investigation and timelines) than the cancer under investigation. Repeated primary care appointments about the same ongoing symptom(s) without any evidence of progress were unsatisfactory for patients32 35 41 45–47 49 51 52 56 57 59 but if there was a clear plan for investigating their symptoms, patients were generally satisfied, even if this took some time.30 31 49 53 54 56 57 59
The patient role in the primary care interval varied, but in most reports, patients adopted a passive role—they received care and followed the advice of HCPs.34 36 37 45 48 49 52 55 59 The exception was when some patients believed their GP was slow to refer them to secondary care: this could result in patients taking on a more active role in order to get the referral to secondary care they believed they needed.34 36 49 52
Interpersonal
In terms of primary care appointments (usually with GPs), how the HCP communicated had a major impact on patient experience.16 17 23 26–28 35 36 38 41 Good communication skills and fostering of the patient–carer relationship34 36 40 43 49 51 53–55 contributed to patients feeling that they were being properly listened to (and this was the most commonly reported subtheme).29 31 33–39 43 45–51 53 54 57–59 Although patients wanted to be listened to, being involved in their care decision-making was not something they particularly expected during the primary care interval and were quite surprised when it happened.
Patients reported a negative view when they felt HCPs were not treating them as an individual, for example, by making assumptions based on age.32 33 36 45 47 52–54 Many patients wanted reassurance from HCPs, but not if this was false reassurance.29 32 33 37 45 46 48 49 51 53
HCP skills
Patients were reassured when they perceived that HCPs were clinically competent.29 32 33 38 40 46 50 51 54 55 57 While clinical skills and knowledge were important, many patients accepted that there are challenges associated with recognising rare cancers (or more challenging cancers to diagnose) in primary care. Sometimes HCPs started treatment for conditions other than cancer, and patients accepted this, as long as they were reviewed appropriately.31–36 39–41 43 45 46 49 50 52–54 57 58 Safety netting, so that patients knew when it would be appropriate to ask for another appointment if symptoms did not improve, or setting out a clear plan of what the HCP intended to do to diagnose and address the underlying problem, were both identified as beneficial by patients.39 49 52 56 58 Nevertheless, being referred to secondary care in a timely manner was important to patients.29 36–38 40 41 43 46 47 49–52 54 56 57
Organisational
From an organisational perspective, the impact of primary care resources on patient experience was a commonly highlighted issue.36 39 41 44 46 53 54 56 57 59 This included availability of appointments, duration of appointments and limits on the number of problems that can be discussed during each appointment. This may mean patients have to prioritise their symptoms, which can be difficult. There was general agreement that long waiting times for the initial secondary care assessment were frustrating.32 33 45 46 51 53 58 In some cases, the same experiences were viewed positively by some patients and negatively by others. For example, while some people felt reassured that they were on the cancer referral pathway, others found this frightening38 48 59; some patients appreciated the benefits that continuity of care provided while others recognised the advantages that a different opinion could bring.33 35 36 45 49 51 52 54 57 59 For some women with breast problems or uterine bleeding, access to a female HCP was viewed positively.
Clinical recommendations
Nearly all (28/31, 90%) studies provided clinical recommendations related to how the patient experience could be improved.
Patient experience
Some studies mentioned that awareness and early diagnosis could be promoted by updating cancer referral guidelines,32 47 and increasing public awareness of key symptoms of cancer, cancer risks and cancer treatments.30 40 43 45 50 51 It was recommended that informational support for patients should be tailored to a non-clinical diverse public and include patients’ experiences.43 In addition, patients’ skills could be expanded to encourage help-seeking behaviour and support their communication with HCPs.36 39 Patient information needs could be supported by providing information on how to recognise possible cancer symptoms (including exploring their understanding), diagnostic tests and the referral process.
Interpersonal
Effective patient–clinician interaction and communication were also recognised as important areas for improvement.30 33 37 39 42–45 48 53 58 59 Mutual understanding and patient involvement in the consultation were generally seen as key components of the diagnostic process.
HCP skills
Most clinical recommendations focused on improvements within primary care practices or among HCPs. The need for continuous cancer education to increase awareness among HCPs (particularly for non-specific or rare symptoms) and training in technical skills and/or competence was addressed in most studies.31 32 34 36 38–41 45 50 53 Consultations should include extended history taking (with use of prompts if needed), appropriate physical examinations and a review of consultation patterns (eg, to see if consultation rates increased).39 40 49 54 57
It was emphasised that HCPs should be transparent and share diagnostic uncertainty in consultations.37 58 Safety netting was seen as particularly important for suspected cancer conversations, and several studies stated the need for an ‘open-door’ policy or clear action plans at the end of consultations, including discussions on next steps or advice on when to reconsult.31 39 49 56 58
Organisational
System-level improvements were also suggested by some studies to help support early diagnosis and patient experience. These included increasing resources to support HCPs, for example, by offering longer appointments or by introducing diagnostic tools or (electronic) decision aids.32 39 44 47 51 Reducing the system complexity by introducing cancer coordinators, referring to specialist centres or streamlining the referral process51 52 55 and safeguarding continuity of care39 53 were also recommended to improve clinical practice.
Research recommendations
Most studies (23/31, 74%) provided recommendations for future research. This sometimes related to what research methods to employ, including linking primary and secondary care databases,52 57 combining primary care records with qualitative research,32 and carrying out prospective longitudinal studies.36 There were also suggestions around who research should be carried out with, such as patients who are not referred to secondary care,48 family members,34 41 primary care HCPs,31 32 34 36 41 47 52 57 specific population subgroups36 and members of the community.43 In terms of topics for future research, suggestions included exploring HCP consultation behaviour41 and how to improve patient HCP communication,30 sometimes with a focus on inequality44 46; best practice for safety netting56; comparing patient and HCP symptom perception40 41; researching ways to improve the cancer care pathway.33 42 52 55 56 This may include ways of accessing diagnostic tests37 52; exploring quantitatively the impact of the diagnostic route53; investigating why some patients present at the emergency department51 and the role of health literacy49 and GP characteristics.54
Discussion
This scoping review is the first to systematically map the experiences and needs of patients who present with symptoms of cancer in the primary care interval. There is relatively little research in this area, and the experience and needs of patients in the primary care interval were not the primary objective of most of the included studies. Nevertheless, four themes were identified which demonstrated that the patient experience is complex and is shaped by the interaction between patient and HCP, the skills of HCPs and by organisational factors. Key for patients was that they felt heard and understood by HCPs, that there was a plan in place to find out what was causing their symptoms, and they had the right information to guide them through the next stages of the diagnostic process. These findings were reflected in the studies’ clinical recommendations for improving patient experience, which included training and education for HCPs, patients and the general public, improving communication during consultations, meeting patient information needs, safety netting and increasing primary care resources.
Most of the included studies used qualitative research methods. Of the seven studies which included a quantitative element, most focused on patient experience or satisfaction,29 35 38 44 45 54 while one study collected data on when medical help was first sought for any symptoms experienced47 and another study carried out a content analysis of web-based patient accounts.45 None of the studies included patients-reported outcomes, such as anxiety, depression or sleep disturbance. Despite the wide variety of research recommendations included in the studies, this gap in the evidence around how the experience of patients during the primary interval impacts patient outcomes, in the short, medium and long term, was not identified.
Data collection for all but three of the studies44–46 was carried out before the COVID-19 pandemic. The pandemic resulted in rapid changes to the primary care consultation process, such as remote consultations. Specific to symptomatic cancer presentation, there is evidence that remote consultations (via telephone, asynchronous text messaging, video, email or online portal) made it more difficult for GPs to assess non-specific signs and symptoms of cancer and to make appropriate risk assessments.60 Currently, less than 1% of consultations take place by video/online, and this proportion has remained consistent in recent years.61 Most remote consultations are carried out via telephone, and while these have slowly decreased since mid-2020, they continue to account for more than a quarter of all appointments.61 Further research is required to understand the impact of remote consultations in primary care on clinical outcomes in general as well as cancer outcomes and patient experience more specifically.
Along with remote consultations, further changes are now underway to innovate the cancer diagnostic pathways in the UK.62 The roll-out of rapid diagnostic centres is part of a major programme of work to speed up and improve early diagnosis of cancer and other serious conditions. This new service is designed as a single point of access to multidisciplinary teams supported by rapid diagnostics. It provides a diagnostic service for all patients with symptoms that could indicate cancer, and also includes a new pathway for those who present with non-specific but concerning symptoms, such as unexpected weight loss, malaise, unexplained pain, shortness of breath and persistently abnormal blood tests. It is being rolled out nationally by NHS England and NHS Improvement as part of the NHS long-term plan,63 and it is estimated that the service will achieve full population coverage across England in 2024. This new cancer diagnostic pathway has the potential to address several concerns that were identified in the current review, in particular the need for accessible services, timely referrals and efficient timelines. A cost-effectiveness analysis has already been conducted64; however, a comprehensive clinical evaluation of this service, including the impact on patient and HCP experiences, is warranted.
In the future, even more changes are anticipated in the cancer diagnostic pathways as artificial intelligence is incorporated into strategies to improve early detection of cancer.65 For example, ‘C the Signs’ is a tool designed to support GPs to recommend what investigations or referrals are required by a patient presenting with cancer symptoms.66 While these tools may be able to provide support in terms of when to refer to secondary care, it will be important to consider some of the other subthemes identified in this review during the implementation process. For example, patients disliked HCPs making assumptions based on personal characteristics and they may be concerned that tools will do the same. Indeed, there is a concern that such tools could be inherently biased if the data they are developed with are not fully representative.67 The need to be heard and understood, receiving reassurance from HCPs, good HCP communication and adequate information are also important factors which need to be retained, even if AI takes on a more central role in the cancer pathway. Further research on the acceptability to patients and HCPs of the role of AI tools, particularly in the primary care interval, is needed as this is lacking.67
Strengths and limitations
As this review only included studies published in English, mainly (>50%) conducted in the UK, and all originating from high-income countries, the results may not be generalisable. Health systems and cancer pathways vary across countries which made it difficult to interpret some of the findings. Challenges in the analysis arose from the diversity of patient experience and informational needs. The scoping review method aided the synthesis of these diverse findings as it enabled the team some flexibility about how to categorise and present the data, as supported by the Joanna Briggs Institute method for Scoping Reviews.23 Other limitations relate to the heterogeneity of the cancer types, and sometimes limited contextual data (such as ethnicity) which may impact the depth of understanding of patients’ experiences and needs.
The strength of this review is that it provides a good overview of an emerging but under-researched topic. The review process was undertaken in a comprehensive way using a transparent and robust qualitative approach to analysing findings. The review has highlighted the limits of the available evidence, as few papers note patients’ needs from an early presentation of symptoms through to onward referrals and treatment later in the cancer pathway. The findings also note key information and communication needs for the different participants—patients, HCPs and how these needs interact within the healthcare system. Additional work is needed to understand the differing needs of patients from diverse ethnic and underserved groups.
Conclusion
The scoping review has summarised the factors which contribute to patient experience in the primary care interval and has highlighted the importance of providing information to patients related to process (eg, next steps in the pathway, timelines). These factors can contribute to service planning as the cancer diagnostic pathway for symptomatic presentation of cancer evolves. The effectiveness of this pathway should be evaluated not only in terms of clinical outcomes, but also patient-reported outcomes and experience, along with the perspectives of primary care HCPs.
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information.
Ethics statements
Patient consent for publication
Ethics approval
Not applicable.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Twitter @DrHelenaHarder
Contributors All authors conceptualised this work, agreed on the design and search strategies, carried out literature screening, data extraction, analysis and interpretation. SJW and HH drafted the manuscript. All authors reviewed it critically for important intellectual content and approved the version submitted. SJW coordinated the research team and is the guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.
Provenance and peer review Not commissioned; externally peer reviewed.
Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.