Post-Treatment Concerns of Cancer Survivors in Alberta, Canada: History
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Contributor:
Claire Link
,
Andrea DeIure
,
Linda Watson

As the rates of cancer incidence and survival increase in Canada, more patients are living in the post-treatment survivorship phase of their cancer journey. Identifying cancer survivors’ concerns and unmet needs is important so that health care teams can provide relevant information, supports, and resources. Secondary data analysis was carried out on the Alberta patient sample from the 2016 Pan-Canadian Transitions Study survey, designed by the Canadian Partnership Against Cancer. 

  • cancer survivors
  • survivorship care
  • follow-up care
  • unmet needs
  • transitions in care

1. Introduction

Cancer patients experience unique concerns throughout their cancer journey, and identifying these concerns is critical to providing tailored and comprehensive care. With the survival rate for many cancer types increasing in Canada [1], more patients are completing their treatment, making it essential to understand the challenges experienced by patients in the post-treatment survivorship phase of their cancer journey [2][3]. Many cancer treatments lead to late and long-term physical challenges and symptoms [4][5][6]. Mental health concerns, predominantly anxiety and depression, are also prevalent [7][8]. This points to the fact that this post-treatment patient population often requires specialized resources and services. Research on the concerns and challenges of cancer survivors is increasing, with the United Kingdom’s National Cancer Survivorship Initiative (NCSI) making considerable progress in this area [9][10]. Research in Canada, and within-province research in particular, was scarce prior to 2016 (see Campbell et al. 2011 as an early exception [11]), when the Canadian Partnership Against Cancer (CPAC) undertook a national survey of cancer survivors across the country.

2. Experiences of Cancer Patients in Transition Study

A federally funded organization, CPAC considers survivorship a key area for improving experiences, quality of care, and outcomes for cancer patients. In 2016, CPAC administered an innovative national survey called the Experiences of Cancer Patients in Transition Study (commonly referred to as the “Transitions Study”) to cancer survivors across Canada [12]. The goal was to identify key gaps in care and common unmet needs within this population and gain a deeper understanding of the experiences of patients in this phase of their cancer journey. Development of the survey was guided by an extensive literature review, along with consultations with different stakeholders, including cancer survivors [13]. The survey was designed through an iterative process and evaluated with fifteen cancer survivors using cognitive interviewing, followed by performance testing with 96 survivors [13].
Surveys were mailed to over 40,000 cancer survivors who were between one- and three-years post-treatment, across all ten Canadian provinces [13]. Ethics approval and survey administration were coordinated by research teams within each province, based on the criteria outlined by CPAC. Participants in all provinces except Quebec had the option of completing the mailed paper survey or an online version, access to which was provided in the mailed information package [13]. In order to survey survivors one to three years beyond their primary cancer treatment, the inclusion criteria were limited to individuals diagnosed with early stage, non-metastatic breast, prostate, colorectal, and melanoma cancers, as well as certain hematological cancers. Additionally, for survivors between 18 and 29 years of age, all non-metastatic cancers were eligible as well as metastatic testicular cancer (for additional details on the survey design, see Fitch et al. 2020 [13]). Since the survey’s completion, many analyses have explored the experiences of transitioned patients in the national sample (see [13][14][15][16][17]—among others). However, to date no studies have focused on provincial-level data to identify the unmet needs of cancer patients at a local level, which could directly inform changes within a provincial cancer program while also providing considerations for other provincial and national cancer organizations.

3. Cancer Care and Transitions in Alberta

Supporting safe and effective post-treatment transitions for cancer patients and their care teams is a priority in the province of Alberta and is one way to improve patients’ survivorship experiences while creating capacity within the cancer program. The provincial cancer program, Cancer Care Alberta (CCA), has conducted several transitions initiatives since 2013, with the goal of ensuring that patients receive comprehensive follow-up care within and outside of the cancer program, and that patients’ post-treatment concerns can be effectively self-managed or handled by their primary care or cancer care provider [18]. In order to ensure smooth transitions for patients as management of their care shifts between cancer care and primary care, it is crucial to understand what concerns cancer survivors commonly experience and provide appropriate programing, information and supports to help manage these concerns. CCA does not have a systematic way of tracking patients who are transitioned out of the cancer program and as such, prior to the Transitions Study, a large-scale provincial survey focusing on the needs of cancer survivors had not been undertaken.
Although many factors impact the symptoms and concerns that a cancer patient experiences, cancer type is inevitably a heavily influencing factor. Within CCA, care is provided by teams within 13 broad cancer groupings called tumour teams [19]. The organization of care providers into these tumour groupings allows health care professionals to specialize their knowledge and expertise to the needs of specific cancer patient populations. While it is important to understand the common concerns of all cancer survivors, it is equally important to understand what symptoms and concerns are most prevalent in each tumour group so that tumour teams can focus on the needs and issues most relevant to their patients. Specifically, it would be helpful for tumour teams to be aware of the most common challenges encountered by their patients post-treatment, so they can provide appropriate information, supports, and resources to patients prior to their transition from the cancer program. Primary care and community cancer support organizations would also benefit from an awareness of the common and unique concerns experienced by cancer survivors, as they will be required to support a growing proportion of survivors’ post-treatment care needs over the coming years [20]. While other studies have separately examined the unmet needs of cancer survivors by age [13][14][15], no analysis has focused on specific tumour groups or cancer types. Without knowing the unique concerns for each group, it is difficult to implement changes in practice to ensure that the needs of transitioned patients can be met, regardless of the setting in which patients are receiving care.

4. Common Concerns

Descriptive and multivariable logistic regression analyses were conducted, organizing patients into five tumour groupings based on common cancer types: breast, gastrointestinal, genitourinary, melanoma, and hematological. Examining the top concerns for patients in each tumour group, researchers see that patients do not all have the same challenges, although there are some common concerns across most tumour groups such as fatigue and anxiety. This points to the importance of preparing cancer patients moving into the post-treatment phase with information on managing both physical and emotional symptoms, as both are likely to be prevalent. Ambulatory cancer programs as well as primary care and community organizations may want to dedicate resources or funding to enhance services related to managing these symptoms, as they are common across cancer types. Anxiety was identified as a top concern for patients in all tumour groups except genitourinary cancer. Existing research suggests that anxiety is high among cancer survivors, often largely due to the ever-present fear of recurrence [8][21][22]. Age significantly impacted the odds of having concerns with anxiety for patients in the breast, melanoma, and hematological tumour groups. Younger patients (aged 18–44 and 44–64) had significantly higher odds than patients aged 65 and older. In particular, the youngest age group’s odds were dramatically higher, with an odds ratio around seven for hematology and melanoma patients and an odds ratio greater than eight for breast cancer patients. This fits with literature demonstrating that younger patients, particularly those in the 15–39 age range (commonly called Adolescents and Young Adults, or AYAs), regularly experience heightened anxiety and fear of recurrence [23][24]. The distinct needs and experiences of AYA cancer survivors are increasingly being recognized, and AYA-specific resources are being developed by cancer programs within and beyond Canada [25][26][27]. Tumour teams and primary care providers may benefit from gaining awareness of these resources and ensuring that their patients are aware as well. Notably, while anxiety was also a top concern for gastrointestinal patients in this research, there were no significant differences based on the included demographic factors.
Fatigue was a top concern for patients in three of the five examined tumour groups. Like anxiety, fatigue has long been identified as a common issue among cancer survivors, as many treatments lead to long-term fatigue and tiredness [28][29][30]. This symptom is challenging because it requires considerable self-management on the part of patients, especially post-treatment, as patients move out of their sick role and work to reclaim their everyday lives. Patients may use a variety of strategies including physical activity, mindfulness exercises (such as yoga), and different kinds of therapeutic interventions [31]. Cancer care teams should ensure their transitioning patients have a variety of information related to fatigue self-management and community resources so that patients are aware of different strategies and programs available and can determine what works best for them. Additionally, patients may benefit from health coaching from their care providers to ensure they feel confident and knowledgeable about their self-management responsibilities in the post-treatment phase. Studies have shown that dedicated health coaching has measurable quality of life and symptom-specific improvements for cancer survivors [32]. A study in China demonstrated significant reductions in cancer-related fatigue specifically for pediatric cancer patients who received home-visit health coaching [33]. While home visits may not be possible for adult cancer survivors, given the much larger population size, health coaching in other forms should be considered by cancer care, primary care, and community programs, particularly for fatigue and other symptoms for which self-management is critical. In the current research, among breast cancer survivors, younger survivors had significantly higher odds of being concerned with fatigue than older patients; however, age did not significantly influence fatigue concerns for gastrointestinal or hematological patients. Younger breast patients may be more concerned about fatigue due to lifestyle differences tied to their younger age, or they may have less awareness of relevant resources available to them. Health care providers with younger patients, and younger breast patients in particular, may want to take care to check in with these patients about their fatigue and associated self-management techniques, to ensure their concerns are being adequately addressed.

5. Tumour Group-Specific Concerns

While fatigue and anxiety were common concerns across most tumour groups, there were multiple unique issues as well. Unsurprisingly, patients treated for gastrointestinal cancer were more concerned with gastrointestinal problems than were other patients. Interestingly, within this tumour group, male patients had about half the odds of having these concerns compared to female patients. This could serve as a flag to gastrointestinal care teams that their female patients may benefit from additional resources to help manage their concerns. Genitourinary cancer patients differed considerably from the other patient groups, with their three highest concerns—sexual function, sexual intimacy, and bladder/urinary problems—all being unique to this group. Tumour teams and primary care providers caring for genitourinary patients may want to use a tailored approach when supporting these patients post-treatment, as general survivorship resources may not be sufficient to address their distinct concerns. Importantly, previous studies have identified that sexual health and sexual concerns are often an area of unmet need for cancer survivors [34][35][36], and the findings of the current research support this. This suggests that patients, and perhaps particularly genitourinary patients, would benefit from additional information on these topics prior to their transition. In contrast to the unique top concerns of this group, patients in the breast and hematological tumour groupings had the same top three concerns, in the same order. This knowledge could prompt cancer programs and community organizations to develop more general resources that can be used by patients of any cancer diagnosis.
Interestingly, while the multivariable analyses revealed key demographic factors influencing concerns within certain turmour groups, they also revealed that demographic factors were not as relevant within other groups. Hematology is the best example of this, with only two significant findings across all three models. This suggests that the issues most concerning to these patients are quite common across the majority of patients with hematological cancers—in other words, their concerns are more related to the cancer itself, rather than demographic factors. This is supported by the descriptive results. Looking at the three top concerns for hematological patients, researchers see that a higher percentage of patients in this grouping endorsed fatigue (91.2%), anxiety (76.7%), and concentration/memory (63.7%) than in any other tumour group. The percentage of hematology respondents who indicated concern with fatigue was the highest percentage of respondents indicating any concern, across all tumour groups, for any of the 20 concerns included in the survey. Providers who care for hematological patients should ensure to discuss fatigue, anxiety, and concentration/memory with each patient, as it is likely that these issues will be of concern regardless of a patient’s demographic background.

6. Information after Completing Cancer Treatment

The information questions have direct practice implications, highlighting areas where clinicians in different tumour teams could work to provide additional information to prepare patients for their transition back to their community for follow-up care. In the Alberta sample, a higher percentage of patients agreed that they had received information about treatment side effects than about other topics (with melanoma patients as an exception). This general pattern is reflected in the national adult survey sample, with a previous study finding that 81% of respondents agreed that they received information about treatment side effects, while only 62% and 58% agreed that they received information about signs of recurrence and community resources, respectively [13].
Cancer care providers likely, and understandably, have greater awareness of treatment side effects and signs of recurrence than of community-based resources available to patients. It is important for cancer programs to promote awareness of relevant community resources to different tumour teams so that they can share this information with their patients. A higher percentage of patients treated for hematological cancers agreed that they had received information about community resources; with this in mind, the hematology tumour team in Alberta could potentially be looked at as a positive example for other tumour teams. In addition to resource information, it is critical that tumour teams provide more information about signs of recurrence to both patients and primary care teams, as there is considerable research demonstrating that the fear of recurrence is a major source of anxiety for patients in the survivorship phase [21][37][38]. It would be beneficial for cancer programs to develop tailored patient education materials for each tumour group, including general and disease-specific resources and information, which could be distributed to patients before their transition from the cancer program. It would also be helpful for similar information to be shared with primary care teams, as there is strong evidence suggesting that there are often gaps in knowledge in this area for primary care providers [20].
It should be noted that, across patients treated for the five included cancer types, practical concerns such as “returning to work/school” or “paying health care bills,” were not top concerns. However, patients still encounter practical challenges, as highlighted in Table 1. Patients could benefit from being provided with information and resources to manage their practical issues in addition to their symptoms [39]. Much of the practical information could likely be general rather than tumour-specific.
Table 1. Respondents’ concerns in the practical domain (by tumour group).
Practical Breast Melanoma Gastrointestinal Genitourinary Hematological
% (n)
Concerned		 % (n)
Concerned		 % (n)
Concerned		 % (n)
Concerned		 % (n)
Concerned
Returning to work/school 30.0 (140)
Total = 466		 10.7 (26)
Total = 243		 22.8 (84)
Total = 368		 17.4 (62)
Total = 356		 37.5 (42)
Total = 112
Getting to/from
appointments		 21.4 (100)
Total = 467		 12.8 (31)
Total = 243		 19.8 (73)
Total = 368		 12.9 (46)
Total = 356		 26.8 (30)
Total = 112
Taking care of family members 17.7 (83)
Total = 468		 8.2 (20)
Total = 243		 12.2 (44)
Total = 362		 8.7 (31)
Total = 356		 21.8 (24)
Total = 110
Difficulty getting health/life insurance 19.7 (92)
Total = 466		 15.4 (37)
Total = 240		 15.6 (57)
Total = 365		 14.7 (52)
Total = 353		 19.8 (22)
Total = 111
Difficulty paying health care bills 18.5 (87)
Total = 471		 13.2 (32)
Total = 243		 16.6 (61)
Total = 368		 16.3 (58)
Total = 355		 30.0 (33)
Total = 110

This entry is adapted from the peer-reviewed paper 10.3390/curroncol29040218

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