Abstract
Background: Delays in cancer diagnosis have been associated with reduced survival, decreased quality of life after treatment, and suboptimal patient experience. The objective of the study was to explore the perspectives of a group of family physicians and other specialists regarding potentially avoidable delays in diagnosing cancer, and approaches that may help expedite the process.
Methods: We conducted a qualitative study using interviews with physicians practising in primary and outpatient care settings in Alberta between July and September 2019. We recruited family physicians and specialists who were in a position to discuss delays in cancer diagnosis by email via the Cancer Strategic Clinical Network and the Alberta Medical Association. We conducted semistructured interviews over the phone, and analyzed data using thematic analysis.
Results: Eleven family physicians and 22 other specialists (including 7 surgeons or surgical oncologists, 3 pathologists, 3 radiologists, 2 emergency physicians and 2 hematologists) participated in interviews; 22 were male (66.7%). We identified 4 main themes describing 9 factors contributing to potentially avoidable delays in diagnosis, namely the nature of primary care, initial presentation, investigation, and specialist advice and referral. We also identified 1 theme describing 3 suggestions for improvement, including system integration, standardized care pathways and a centralized advice, triage and referral support service for family physicians.
Interpretation: These findings suggest the need for enhanced support for family physicians, and better integration of primary and specialty care before cancer diagnosis. A multifaceted and coordinated approach to streamlining cancer diagnosis is required, with the goals of enhancing patient outcomes, reducing physician frustration and optimizing efficiency.
Longer time from recognition of a first symptom to diagnosis of cancer is associated with reduced survival, decreased quality of life after treatment and suboptimal patient experience.1,2 In Canada, family physicians make important contributions to the care of people with cancer throughout the care continuum.3,4 Academic discussions related to this topic have focused on providing clarity about the role of family physicians, and on identifying challenges pertaining to the provision of cancer care in the community. 3,5–7 However, the emphasis has been mainly on postdiagnostic care, with a particular focus on transitions from specialty cancer care back to the community.6 Less attention has been paid to the time before diagnosis. In particular, the processes of handling cancer suspicion and referring to specialists, and how these factors impact timelines to diagnosis remain poorly understood.8,9 Little has been published regarding specialist perspectives on delays during the diagnostic period for cancer.3
We designed this study to help address these gaps. The objective was to explore the perspectives of a group of family physicians and other specialists in Alberta, Canada, regarding factors contributing to unnecessary delays between first appointment with a family physician and cancer diagnosis (i.e., diagnostic interval), and to solicit their suggestions for expediting or improving the process.
Methods
Design
We conducted a qualitative study using interviews that followed an interpretive description approach.10 Interpretive description studies explore a clinical phenomenon of interest to capture themes and patterns with subjective perceptions, and generate an interpretive description capable of informing clinical understanding and practice.10,11 In this way, interpretive description allowed us to explore the diagnostic interval from the perspective of family physicians and other specialists to inform care during this period.
Setting and participants
We used convenience sampling12 to recruit family physicians and other specialists involved in the diagnosis of cancer in Alberta, drawing upon existing connections with members of the Core Committee of the Cancer Strategic Clinical Network (9 physicians)13 and the Alberta Medical Association (13 000 physicians). We sent identical emails to these 2 groups, inviting both family physicians and other specialists practising in Alberta. We had no specific requests about type of specialists, other than that potential participants be in a position to discuss cancer diagnosis. We shared study information with potential participants and asked them to contact us if they were interested in participating. In addition, we used snowball sampling, whereby we asked participants to recommend physician colleagues who were potentially interested in participating.12 We tracked the profile of respondents as they contacted us and found no need to deny participation to anybody.
Data source and collection
We conducted in-depth, semistructured interviews. Interview guides for family physicians and other specialists were identical, except for a section pertaining to the process followed by family physicians when patients presented with symptoms (Appendix 1 and Appendix 2, available at www.cmajopen.ca/content/9/4/E1120/suppl/DC1). Two authors (A.P.B. and K.G.) developed the interview guides based on the literature and findings from a previous study of patient perspectives.14 We pilot tested the guide with 4 participants. Participants provided informed consent before interviews.
One author (K.G.), a qualitative researcher with a PhD in social science and experience in health services research, conducted the interviews. She had no prior relationships or interactions with the individuals approached for interview. She conducted interviews individually by phone, without the presence of nonparticipants. No repeat interviews were conducted. During each interview, the researcher took field notes to maintain contextual details. Interviews occurred in June to September 2019.
Data analysis
We accepted additional participants until reaching data saturation, meaning that no new themes emerged as we analyzed the interviews that had already been conducted.15 We audiotaped all interviews, transcribed them verbatim and imported them into NVivo Version 11 (QSR International).
We analyzed all data from family physicians and other specialists together. We performed a thematic analysis11 using an inductive, data-driven coding process to reflect on how participants made meaning of their experiences.16 The analysis entailed a review of each transcript, identification of initial themes, and ongoing development and refinement of themes as data collection and analysis proceeded. One author (K.G.) organized current themes into a set of codes that were applied to text fragments in the transcripts. To ensure consistency and trustworthiness,16 2 authors (K.G., A.P.B.) periodically discussed the interpretation and codes until reaching consensus.
Ethics approval
This study was approved by the Health Research Ethics Board of Alberta, Cancer Committee (HREBA. CC-10–0163).
Results
We interviewed 33 participants (n = 22, 66.7% male), including 11 family physicians and 22 other specialists (Table 1). Interviews lasted 20–80 (mean 30) minutes.
Our analysis identified 4 themes and 9 subthemes that described factors contributing to potentially avoidable delays in diagnosis, and 1 theme and 3 subthemes that described suggetions for improvement (Appendix 3 and Appendix 4, available at www.cmajopen.ca/content/9/4/E1120/suppl/DC1). Themes were common to family physicians and other specialists, and diversity was captured in subthemes. Illustrative quotations for themes and subthemes are provided in Table 2 and Table 3.
Nature of primary care
Limited cancer training
Although medical students typically learn some basic information about cancer biology, respondents reported that little is taught about cancer diagnosis and treatment in medical school or residency programs for family medicine.
Generalists and information overload
Family physicians see patients with a diverse range of problems on a daily basis, but typically encounter relatively few patients with cancer throughout their careers. Furthermore, family physicians reported that they find it increasingly difficult to keep up with the continual outpouring of new information about countless diseases and treatments, including cancer.
Initial presentation
Poor continuity of care
Many patients do not have a family physician and instead visit walk-in clinics or emergency departments for sporadic care. Without a continuous history, the persistence and serious nature of signs and symptoms related to cancer can easily be missed.
Fee-for-service model
The fee-for-service model of family physician remuneration in Alberta may unintentionally incentivize some physicians to see many patients each hour, resulting in short appointments that may preclude completion of thorough histories and physical examinations. Specialists lamented that they occasionally see patients who have not been physically examined; both specialists and family physicians discussed the relevance and necessity of physical examinations to identify insidious cancers when patients present with symptoms.
Investigation
Difficulties determining appropriate testing
As acknowledged by family physicians, without clear guidelines other than for the most common types of cancer that have local or provincial programs to help coordinate care (i.e., breast, lung and prostate cancers in Alberta), family physicians are often challenged to know what tests are required to investigate specific signs and symptoms, especially with cancers typified by nonspecific presenting symptoms. In addition, they find it particularly vexing to determine what specific types of biopsy are required, and how to get them completed expeditiously. Specialists mentioned that they can assist in identifying appropriate testing or determining specific testing requirements, but family physicians reported that accessing other specialists is not always easy.
Long wait lists for (sometimes inappropriate) testing
Family physicians reported difficulty in expediting testing. Inappropriate testing (i.e., unhelpful or erroneous tests) and limited resources may be partially responsible for relatively long wait times for testing, particularly for tests like computed tomography and magnetic resonance imaging. Both family physicians and other specialists agreed that, for many patients, an early referral to a specialist might be warranted since specialists can generally accelerate testing, especially when a cancer diagnosis is suspected.
Specialist advice and referral
Difficulties determining appropriate specialists
As recognized by family physicians, identifying the most appropriate specialist is largely dependent upon having a wide network of physician colleagues, which can be problematic for those with limited contacts. An added difficulty is the increasing number of health care specializations, which makes it harder to determine the most appropriate referral.
Difficulties approaching specialists and barriers to referral
Connecting with specialists for advice and for patient referrals is time-consuming and taxing for family physicians. Some specialists make themselves readily available for early advice, especially when cancer is suspected, but others prefer to be contacted only once family physicians have ordered initial tests and have some idea of a potential diagnosis. The practical barriers that family physicians most often mentioned included the low time availability of specialists for consultations, specialists not taking calls, lack of consistent intake approaches, and referral faxes or letters getting lost.
Referral patterns and access to testing
Physicians work hard to maintain their reputation for providing good and timely care, and they spend part of their career building referral patterns. However, delays are created if physicians refer patients only to colleagues within their informal networks, without considering other specialists whose wait times may be shorter. Both family physicians and specialists noted that access to testing differs among physicians, potentially contributing to inequities among patients. Although some physicians have managed to get rapid access, others might have to wait long periods.
Suggestions for improvement
System integration
Family physicians and other specialists emphasized the need to address system fragmentation by adopting an interdisciplinary, team-based approach that facilitates access to contacts, advice, testing and referrals, thus expediting patient care in a seamless manner.
Care pathways
Participants referred to clear and seamless standardized pathways for most common cancers as tools that could help manage patient care. Pathways enhance care coordination, set care expectations, and provide cancer-specific recommendations, processes and time frames for patients. In addition, they may include links to resources for clinicians, patients and families (e.g., psychosocial resources, system navigation supports). In this study, physicians described optimal pathways as having embedded centralized and coordinated diagnostic services that are ideally provided at a single location where patients could undergo testing and meet with specialists for a definitive diagnosis.
Centralized advice, triage and referral service
Participants suggested a single point of entry for family physicians to access supports for diagnosis and referral. Suggestions for what this service would offer included phone or online advice about what tests to order, how to get a biopsy, what specialist to refer to and connecting to the right specialist for guidance; organizing necessary tests; and triaging and referring patients to the most appropriate and available specialist. This service was imagined to be particularly helpful for supporting the care of patients with vague presentations or less common cancers.
Interpretation
This qualitative study contributes to the literature by focusing on perceived impediments to the expeditious cancer diagnosis. Findings showed that, although family physicians play a critical role in early cancer diagnosis, they may face substantial challenges in effectively unravelling nonspecific symptoms, identifying appropriate testing needs, and accessing diagnostic and specialized resources. Findings also showed that family physicians and other specialists often feel they are working in separate silos, yet it is the specialists who hold the knowledge of how best to expedite cancer diagnosis. Results may inform improvements in health system integration and the development of interventions to streamline the diagnostic process.
Our findings are aligned with the handful of previous studies that have explored potentially avoidable delays occurring in the diagnostic interval in Canada,3,17 including poor care continuity, and inconsistent communication and collaboration between family physicians and other specialists.3,6 This study incorporates the perspectives of specialists, particularly that they appreciate the important and challenging role of family physicians in diagnosing cancer and are willing to provide advice and expedite diagnosis if cancer is suspected. These results are relevant in the context of bridging the “two solitudes” of primary and specialist care.4
Participant suggestions, namely the implementation of care pathways with further support for family physicians, are important, given the strong promotion of pathways in the Canadian context to guide care of patients with different cancer types.17 A successful example is the Alberta Breast Cancer Diagnostic Assessment Pathway, which addresses variation and wait time between discovery of a highly suspicious finding on imaging and referral to a breast program.18 Our study supports the importance of such pathways, as recognized by other stakeholders, including patients,14 and validates their perceived value among family physicians and other specialists.
Our results suggest the need to explore the development of novel pathways centred on serious, nonspecific symptoms, as done in other countries.19–21 This idea is garnering interest around the world, given that almost half of patients with cancer present with vague symptoms.22 Some jurisdictions, including the United Kingdom, Denmark and Manitoba, provide rapid referral pathways that facilitate quick access to testing for patients with specific symptoms and cancer types.9,21,23 In addition, our findings suggest it might be unrealistic to expect that family physicians know every existing pathway and have them all readily available when required, which may show the need for pathway maps, as used in Ontario (https://www.cancercareontario.ca/en/pathway-maps) and for further study of how family physicians think about using pathways.
Our findings highlight the need to improve system integration by adopting team-based approaches and by enhancing access to specialty information and appropriate testing. Participants reported a desire for the development and implementation of a centralized service where primary and specialist physicians converge in their roles. This would help address the issue of promptly getting patients to the right provider, even if family physicians do not have a strong informal network of physician colleagues to draw upon. Initiatives such as specialty teleconsultation systems24 and diagnostic assessment programs25 should be considered.
Action to better support the important role of primary care in the diagnostic interval is particularly relevant in the context of the growing number of cancer cases,26–28 and the increased demands put on primary care for more involvement throughout the cancer care continuum.29 Future studies should further explore and rigorously assess current and innovative approaches to improve integration between primary and specialist care. Consideration of how different contextual factors (e.g., limited training, fee-for-service model) could be addressed to enhance effectiveness are warranted. Approaches are needed to support the involvement of all key stakeholders in the codesign of pathways, centralized referral and support systems with the goal of optimizing the care of patients with a potential cancer diagnosis.
Limitations
Given resource constraints, we opted to interview additional physicians rather than to seek participant feedback on their transcripts or summary reports. This allowed us to achieve data saturation, lending greater credibility to findings and richer understanding of physician experiences. An additional limitation is that most participants are men, and gender dynamics might have shaped the interview process and data provided by these participants.30 We did not capture information on whether physicians work in an academic or non-academic setting. Affiliation with an academic institution may be associated with differences in referral experiences. Lastly, only a few physicians residing outside large urban centres participated in the study, and most of them were from communities near major urban centres. As such, the findings may not reflect the experiences of physicians in rural and remote communities of Alberta.
Conclusion
In this study, we confirmed that family physicians have an important contribution to make in the timely diagnosis of patients with cancer, but found that expeditious diagnosis is often a complex and time-consuming endeavour. Enhancing support and integration among primary care and specialist physicians, coupled with the development and implementation of an efficient diagnosis coordination system, may lead to improved outcomes and experiences.
Acknowledgements
The authors acknowledge service sections of the Alberta Medical Association for their assistance in recruiting participants, and study participants for their insights and the Core Committee of the Cancer Strategic Clinical Network for their support.
Footnotes
Competing interests: Anna Pujadas Botey, Kathy GermAnn, Paula Robson and Barbara O’Neill report support from Alberta Health Services. Paula Robson also reports her role as board chair of the Canadian Cancer Research Alliance.
This article has been peer reviewed.
Contributors: Anna Pujadas Botey and Paula Robson conceptualized the study. Anna Pujadas Botey and Kathy GermAnn designed the study, with support from Paula Robson. Anna Pujadas Botey administered the project, and Kathy GermAnn collected and analyzed data. Kathy GermAnn, Paula Robson, Barbara O’Neill and Douglas Stewart made substantial contributions to the interpretation of data. Anna Pujadas Botey prepared the first draft of the manuscript. All authors revised it critically for important intellectual content, gave final approval of the version to be published and agreed to be accountable for all aspects of the work.
Funding: The authors did not receive specific funding for this work.
Data sharing: All relevant data are within the manuscript. Further data excerpts are available on request from the corresponding author.
Supplemental information: For reviewer comments and the original submission of this manuscript, please see www.cmajopen.ca/content/9/4/E1120/suppl/DC1
This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY-NC-ND 4.0) licence, which permits use, distribution and reproduction in any medium, provided that the original publication is properly cited, the use is noncommercial (i.e., research or educational use), and no modifications or adaptations are made. See: https://creativecommons.org/licenses/by-nc-nd/4.0/
References
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