Introduction

Cancer is the leading cause of death in Canada [1]. About half of Canadians will develop cancer in their lifetime, and about one-fourth will die of the disease [2]. Evidence suggests that diagnosing cancer at earlier stages may be associated with improvements in survival [3].

Significant intervals from first noticing a symptom to receiving a cancer diagnosis (known as the diagnostic period) have been widely documented in the literature [4, 5]. A number of researchers have reported associations between longer intervals and later stages of cancer at diagnosis, reduced survival, decreased quality of life post-treatment, and suboptimal patient experience [3, 6]. In Alberta, analyses of administrative data spanning 2004–2011 described potentially preventable long periods from suspicion to diagnosis for breast, colorectal, and lung cancers [7–10]. In Canada and across the world there are substantial variations in the length of the diagnostic period for different cancers [4, 11], and numerous studies have focused on understanding factors that may influence this timeline in order to improve health outcomes and patient experience [12].

The importance of discussing the path to diagnosis from the perspective of patients and family members is increasingly acknowledged in the literature [13]. Receiving a cancer diagnosis is often preceded by a period of waiting for a diagnosis following the discovery of symptoms, which is anxiety-provoking [14]. The psychosocial impacts of the wait may be accentuated if patients believe there have been inefficiencies in their pathway to diagnosis. In Canada, discussions to advance cancer diagnosis are mostly based on timeline-related information available in administrative databases [9, 10], and not so much on perceived timelines and patient and family experiences [6, 15]. This study was designed to contribute to filling that gap. The objective was to examine the perspectives of a group of patients and family members in Alberta, Canada, on factors associated with timelines to diagnosis and overall patient and family experience. Alberta has a publicly-funded, provincially operated single-payer healthcare system (Alberta Health Services), in which all residents have free access to standard medical care. Primary care, diagnostic and specialized services are covered by public funding. Patients may also, if that is their preference and can afford it, use certain diagnostic services provided in private clinics. The results of this study will be of interest to health services’ researchers, clinicians, operational leads and decision-makers involved in optimizing the care of potential cancer patients, including those working in the areas of primary care, diagnostic services, and cancer care. Learning more about patients and family members’ perceptions and experiences related to the diagnostic period may help inform improvements in health system organization and the development of interventions to minimize stress and improve satisfaction with care, which may have a significant impact on wellbeing [16].

Methods

Results

Patients with cancer and family members who participated in the study represented ten different cancers, 74% of them were women (n = 17), their median age was 59 years (range 42–76), 70% resided in urban locations (n = 16), 65% of patients had been treated with curative intent (n = 15), and the median time between the date of diagnosis and the date of the interview was 19 months (range 2–36). Participants had diverse experiences during the diagnostic period, but some commonalities exist. Thematic analysis revealed three salient themes as being relevant to their experience (Fig 1): potentially avoidable delays, concerns about health status, and misunderstood investigation process. Participants struggled emotionally in the period between identifying symptoms and receiving a cancer diagnosis, and had suboptimal care experiences.

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Fig 1. Emergent themes relevant to cancer patients and family members’ experience during the diagnostic period.

https://doi.org/10.1371/journal.pone.0239374.g001

Discussion

The study described the diagnostic period from the perspective of a group of patients with cancer and family members in Alberta. Findings contribute to the literature by focusing on perceived challenges along the pathway to diagnosis, and thus may inform improvements in health system organization and have implications for the development of interventions to improve the experiences of patients and family members. Of relevance, findings showed that patients and family members participating in the study experienced anxiety and had suboptimal experiences. Participants expressed the importance of self-advocacy and wanting to have an active role in their care, and suggested unmet supportive care needs when navigating the system. The study made two novel contributions to the literature that require additional investigation: 1) the role of accessing patients’ experiences with cancer in helping symptom recognition and dealing with a potential cancer diagnosis, and 2) the importance of an active role of patients and families in their care before receiving a cancer diagnosis. Overall, findings from the study highlight a need for further discussion on the provision of psychosocial supports to potential cancer patients and their families before they have a confirmed diagnosis of cancer.

The finding of participants feeling distressed during this period is consistent with previous studies undertaken in various countries including the United States, Denmark and Canada [13, 18]. Before diagnosis, individuals with symptoms suspicious of cancer face uncertainty and threat of a serious illness while having to undergo medical appointments and tests, which might be fearsome, uncomfortable and demanding. Findings from the study are also in alignment with the literature by indicating that fear about having a serious health condition is an important cause of anxiety among patients and family members waiting for diagnosis [27]. Also in accordance with the literature, findings showed that perceived long timelines add stress to an already stressful situation [28]. Consistent with previous research, participants associated delays with their inaction or late action in seeking medical attention [6], with their doctor’s failure to correctly identify cancer symptoms [12, 29], and with system inefficiencies including variable access to specialists and testing and limited coordination of care [30, 31]. Of relevance, participants in the study referred to cancer awareness and second-hand experience with cancer as two important elements supporting the patient’s prompt consult with a doctor. While the relevance of cancer awareness has been previously acknowledged [32, 33], the influence of shared cancer stories on the experiences of potential cancer patients with the diagnostic period has not been discussed in the literature, to the best of our knowledge. In the post-diagnosis literature, access to patients’ real experiences with the disease has been reported important in providing general support to patients with cancer including the provision of information related to cancer and care process, and emotional help [34, 35]. The potential role of having access to these experiences in not just helping individuals seek medical attention, but also dealing with information and emotional aspects of a prospective cancer diagnosis at the beginning of their journey requires further investigation.

A relevant contribution from our study is the importance of self-advocacy and the need to better support patients and family members acquire an active role in their care prior to receiving a cancer diagnosis. Similar to what has been documented in the post-diagnosis literature [36], participants in the study referred to the concept of ‘patient activation’ [37]. They articulated their need or willingness and ability to take independent actions to manage their health and care throughout the diagnostic period. Participants did not only refer to their responsibility for seeking medical attention after identifying symptoms potentially related to cancer, but also for getting their family doctor to facilitate access to the investigation of these symptoms, and for finding their way through the investigation process. On more than one occasion, participants shared that in order to avoid delays and decrease their anxiety they had opted to take on tasks that are typically handled by their doctors such as choosing a particular test, or getting prompt specialist appointments. Similar to what has been discussed in the context of treatment and survivorship [38], the healthcare system, even in the pre-diagnosis period, is increasingly complex, with a growing number and variety of specialties, care delivery sites, and diagnostic tests. In the face of navigating these complexities, and in the context of the psychological burdens of potentially facing cancer it is not surprising that many patients and families find it crucial to advocate for getting their care needs met [35]. In order to fully benefit from the care available to them and to enhance have improved experiences, patients and families spoke to the need to promote their own interests and actively try to avoid situations such as delayed appointments with a specialist or delayed access to appropriate testing.

As acknowledged by participants and supported by previous research, in order to be able to advocate for themselves, patients and family members need to be involved with individuals and groups that support their interests [35, 36]. Unlike post-diagnosis, before diagnosis patients are not “cancer patients” yet and they and their family members do not hold membership in particular patient/family groups that can provide this support. Once a cancer diagnosis has been made, oncology care teams are an important source of support to patients and families [39]. However, before diagnosis, patients often expect this role to be played by family doctors. Family doctors in Canada play a key role in helping to manage and coordinate care for patients before and after diagnosis [40], and as suggested by our findings their engagement from the beginning of the patients’ journey in helping them navigate the diagnostic period and advocating for them when required is important. We heard from participants that it is important for patients/families to feel that family doctors are on their side and support them. Family doctors can support patient and family members willing to engage in self-advocacy behaviours by trying to establish deeper connections with them and adequately informing them. As reported in previous research, family doctors are a primary source of information during the diagnostic period [15], and patients need to feel adequately informed in order for them to participate effectively in making decisions throughout the diagnostic period [35]. Based on our findings, optimal attention to patient and family needs may include hearing their concerns, providing them with regular updates on the investigation process, engaging in discussions of expectations about the different steps involved in the diagnostic period, and assessing their understanding of these conversations. Another important consideration, particularly relevant in the Canadian context, is the diversity of cultural groups, whose perspectives and values about health and wellbeing may differ from the dominant culture [41]. For example, First Nations, Inuit and Métis Peoples in Canada have cultural worldviews and definitions of health that are not reflected in the dominant biomedical approach to health care, and as result they may face important challenges to accessing and using health services [42, 43]. Respect and understanding of these different views, including diverse expectations and responsibilities of patients and healthcare providers, are crucial for appropriate care delivery. Finding ways to promote and support family doctors in the care of all potential cancer patients throughout the diagnostic period and equipping them with the skills and tools required to better support them should be encouraged and explored further.

One of the concerns over widening the traditional scope of healthcare providers to better support patients in taking a more active role in their care is health literacy and the demands placed on patients with low literacy. Health literacy refers to the social and cognitive skills and abilities of individuals to gain access to, understand and use information to make appropriate health decisions [44]. Low health literacy is associated with health inequalities, and people with low health literacy tend to have poorer health and use an increased amount of healthcare resources [45]. As a more active role of patients is gaining importance [46], the boundaries of health literacy are being extended beyond the healthcare system to all sectors of life [47]. Encouraging individuals to take control of their health may result in having people better equipped to navigate the complex healthcare system, and also has the potential to optimize health throughout life [48]. Improving health literacy may be a relevant element in the ongoing evolution towards a stronger, more accessible and equitable health care system.

Conclusion

In an effort to streamline the diagnostic period in Alberta, Alberta Health Services and other stakeholders have established streamlined diagnostic programs for breast, lung and prostate cancers [49–51]. The Cancer Strategic Clinical Network is currently initiating a program to establish an Alberta Facilitated Cancer Diagnosis Strategy that goes across cancer sites and geographies in the province. To help inform this work, our study asked patients and family members in the province about their experiences from symptom to cancer diagnosis and found that they struggled emotionally. Findings complement quantitative studies that described long and variable periods from suspicion to diagnosis for different cancers [8–10]. Findings suggested that from the perspectives of patients and family members, shorter times to diagnosis are desirable, but many additional factors also need to be considered for improved satisfaction with care. Findings further suggested that it would be beneficial to design particular interventions targeting individuals dealing with a prospective cancer diagnosis, as well as healthcare providers, with emphasis on family doctors. Ideally, these interventions should be co-designed with all stakeholders. Approaches to be considered include increasing awareness of cancer, providing peer-support from others who have had experiences with the disease and the diagnostic process, and facilitating access to the types of supports currently available to people who have received a cancer diagnosis. In the case of health care providers, interventions to increase awareness of patients’ experiences and their needs for support during the diagnostic process, as well as interventions for enhancing their abilities and skills in supporting patients, may be pertinent. An important factor to be considered when developing and implementing these strategies is the acknowledgment of the particular context of each patient/family, and their specific needs throughout the whole process. Although this study helps shed light on how to improve the experiences of patients and family members during the diagnostic period, more work is required with multiple stakeholders to understand how to better support them throughout this difficult time.

Supporting information

Acknowledgments

The authors acknowledge the Patient & Family Advisor Network (CancerControl Alberta) for their assistance in recruiting participants, and feedback on data collection protocol; Debora Allatt, Lorelee Marin, Frances Cusano, and Charlie Fischer for their feedback; and study participants for their insights.