From symptom to cancer diagnosis: Perspectives of patients and family members in Alberta, Canada

Background Significant intervals from the identification of suspicious symptoms to a definitive diagnosis of cancer are common. Streamlining pathways to diagnosis may increase survival, quality of life post-treatment, and patient experience. Discussions of pathways to diagnosis from the perspective of patients and family members are crucial to advancing cancer diagnosis. Aim To examine the perspectives of a group of patients with cancer and family members in Alberta, Canada, on factors associated with timelines to diagnosis and overall experience. Methods A qualitative approach was used. In-depth, semi-structured interviews with patients with cancer (n = 18) and patient relatives (n = 5) were conducted and subjected to a thematic analysis. Findings Participants struggled emotionally in the diagnostic period. Relevant to their experience were: potentially avoidable delays, concerns about health status, and misunderstood investigation process. Participants emphasized the importance of their active involvement in the care process, and had unmet supportive care needs. Conclusion Psychosocial supports available to potential cancer patients and their families are minimal, and may be important for improved experiences before diagnosis. Access to other patients’ lived experiences with the diagnostic process and with cancer, and an enhanced supportive role of family doctors might help improve experiences for patients and families in the interval before receiving a diagnosis of cancer, which may have a significant impact on wellbeing.


examples.
This statement is required for submission and will appear in the published article if the submission is accepted. Please make sure it is accurate.
Unfunded studies Enter: The author(s) received no specific funding for this work.  The importance of discussing the path to diagnosis from the perspective of patients and family members 56 is increasingly acknowledged in the literature [13]. Receiving a cancer diagnosis is often preceded by a 57 period of waiting for a diagnosis following the discovery of symptoms, which is anxiety-provoking [14]. The PFAN coordinator invited selected participants to be part of the study and sent them an email that 83 included a consent form to be reviewed prior to the interview. Additional participants were invited to 84 participate in the study until data saturation was reached [17]. In total, 20 interviews were conducted; 85 with the participation of 18 patients and five family members. 86

87
The framework used for the study was 'Model of Pathways to Treatment' [18][19][20]. It identifies four 88 intervals from suspicion of a health problem to receiving treatment: 1) from detection of symptoms to 89 perceiving a reason to discuss symptoms with a healthcare provider (appraisal); 2) from perceiving a 90 reason to discuss symptoms with a healthcare provider to first consultation (help-seeking); 3) from first 91 4 consultation to formal diagnosis, including the initiation of investigation, prescription of tests, 92 examinations, and diagnosis (diagnosis); and, 4) from formal diagnosis to start of treatment (pre-93 treatment) [19]. The study covers the first three intervals, referred to collectively as the diagnostic 94 period. 95

96
The study used a qualitative research approach [17,21]. This method was selected to facilitate 97 exploration of perspectives and experiences to capture new insights that may inform how to improve 98 experiences during cancer diagnosis, complementing the previous quantitative approaches undertaken 99 in Alberta. In-depth, semi-structured interviews were used for data collection. Interviews followed an 100 interview guide that was developed in close collaboration with PFAN leadership and with feedback from 101 patient advisors affiliated with the Cancer Strategic Clinical Network (S1 and S2 Appendices). Using 102 accepted qualitative research standards [22], pilot interviews were conducted with four patients with 103 cancer to ensure the interview guide answered the proposed research objective. The interview guide 104 covered topics such as how participants made sense of their symptoms, why they chose to visit a 105 healthcare provider and how they experienced going through appointments, referrals, and tests before 106 they were provided with a definitive cancer diagnosis. It also included a section on recommendations for 107 improvement including the need for emotional support during the diagnostic period. Family doctor-related delays. In some cases, participants reported that they believed that their doctor's 166 inability to identify symptoms led to patients undergoing investigation for diseases other than cancer, or 167 a later visit to the emergency department. One participant explained this delay in eventually 168 investigating and identifying cancer as: "she just developed this cough. It wouldn't go away. We took her 169 to the doctor and just said it's allergies […]. Several months went by, and she wasn't any better. We 170 went to the doctor again and again before even thinking of cancer" [relative of lung and brain cancer 171

226
The process of investigation was described differently by participants who accessed care through the 227 emergency department and those who accessed care through their family doctor. Participants who 228 went to the emergency department described the investigation as "very abrupt, instantaneous and with 229 no stress, because it was right away" [breast cancer patient 2]. In several cases, participants who saw 230 their doctor and had the investigation initiated by their doctor explained that the investigation was 231 cumbersome and stressful. They referred to specific complications such as having tests done multiple 232 times or having to travel to inconvenient locations for medical appointments, and also to the fact that it 233 involved multiple steps that were often unexpected and seemed uncoordinated. As explained by this 234 participant: "I just thought I was gonna go in for a mammogram […]. I went for my mammogram and I 235 thought everything would be fine, but they called me back and they said: 'we need to see you again'" 236 [breast cancer patient 10]. What seemed particularly stressful for participants was the fact they did not 237 understand what the investigation process entailed, and were unsure about what to expect. As 238 explained by one participant: 239 "There didn't seem to be a plan, really. I mean, I know they have a plan because that's what 240 they've done a million times before, but they don't share that too much other than to say: 'we 241 are going to do a biopsy or whatever test'. There is not a whole lot of explanation Similar to what has been discussed in the context of treatment and survivorship [35], the healthcare 295 system, even in the pre-diagnosis period, is increasingly complex, with a growing number and variety of 296 specialties, care delivery sites, and diagnostic tests. In the face of navigating these complexities, and in 297 the context of the psychological burdens of potentially facing cancer it is not surprising that many 298 patients and families find crucial to advocate for getting their care needs met [32]. In order to fully 299 benefit from the care available to them and have improved experiences, patients and families promote 300 their own interests and actively try to avoid situations such as delayed appointments with a specialist or 301 delayed access to appropriate testing. 302 303 As acknowledged by participants and supported by previous research, in order to be able to advocate 304 for themselves, patients and family members need to be involved with individuals and groups that 305 support their interests [32,33]. Unlike post-diagnosis, before diagnosis patients are not "cancer 306 patients" yet and they and their family members do not hold membership into particular patient/family 307 groups that can provide this support, leaving healthcare providers as the main group who can do it. 308 While at post-diagnosis stages oncology care teams are an important source of support to patients and 309 families [36], before diagnosis patients expect this role to be played by family doctors. Family doctors in 310 Canada play a key role in helping to manage and coordinate care for patients before and after diagnosis 311 [37], and as suggested by our findings their engagement from the beginning of the patients' journey in 312 helping them navigate the diagnostic period and advocating for them when required is important. We Facilitated Cancer Diagnosis Strategy that goes across cancer sites and geographies in the province. Our 341 study asked patients and family members in the province about their experience from symptom to 342 cancer diagnosis and found that they struggled emotionally. Findings complement quantitative studies 343 that described long and variable periods from suspicion to diagnosis for different cancers [8-10]. 344 Findings suggested that from the perspectives of patients and family members shorter times to 345 diagnosis are desirable, but many additional factors also need to be considered for improved 346 satisfaction with care. Supporting individuals deal with a prospective cancer diagnosis by facilitating 347 access to lived experiences with the diagnostic process and cancer, and enhancing the supportive role of 348 family doctors may improve outcomes for patients and family members. Although this study helps shed 349 light on how to improve the experiences of patients and family members during the diagnostic period, 350 more work is required to understand how some of the psychosocial supports available to cancer 351 patients after diagnosis could be used to support these patients and their families before diagnosis. 352 353