Cancer incidence is increasing and so are survival rates. The aftermath of cancer includes multi-dimensional and long-lasting effects that prevent individuals from recovering and re-integrating into their daily routines. Cancer systems attend to patients during diagnosis and treatment, but often fall short in providing continuity of care afterward. This results in a considerable number of individuals living with the effects of cancer, with little support care. While there are evidence-based recommendations to improve follow-up cancer care, the extent to which they have been implemented remains unknown. To support the needs of cancer survivors The Ottawa Regional Cancer Foundation developed a Cancer Coaching Program (CCP). As life and health coaching interventions have been shown to benefit this population, this study aimed to explore the impacts of the CCP on the lives of cancer survivors. Using a grounded theory approach, the experiences of (n=12) cancer survivors who had previously participated in the program were explored, to create an explanatory model. Descriptive results depicted various beneficial outcomes to participating in the CCP. The dominant role of the CCP is to support survivors by “bridging the gap” to survivorship, through tailored coaching services. This study provides insight into the mechanisms that work for this cancer coaching program, which may be helpful for other programs exploring strategies to assist this population.

Thesis advisor: Lisa Wood Magee / Background: Chronic cancer-related pain is a considerable problem in cancer survivors. The incidence of chronic pain in cancer survivors is nearly double the rate in the general population. Chronic cancer-related pain reduces quality of life and results in higher healthcare utilization. Due to a lack of alternative treatments, the management of chronic cancer-related pain relies on a biomedical model, with opioids being the cornerstone of cancer-related pain management. As concerns about the risks of long-term opioid therapy rise, there is a need to understand the factors that influence chronic cancer-related pain experience. This manuscript dissertation aims to answer the overarching question, “What are the unique factors that inform the chronic cancer-related pain experience in cancer survivors?” Methods: First, an integrative review aimed to examine the evidence of long-term opioid use in cancer-survivors. Next, a qualitative study using descriptive phenomenology was conducted to develop a deeper understanding of the daily lived experience of chronic cancer-related pain. And finally, a prospective cross-section quantitative study was completed to quantify the contribution of unique cancer-specific factors to the chronic cancer-related pain experience in cancer survivors. Results: The integrative review shed light on the biopsychosocial factors associated with the transition to long-term opioid therapy (LTOT), including the role of cancer type, medical comorbidities, mental health diagnoses, and socioeconomic factors. No studies examined pain severity, pain interference, or cancer-specific psychosocial factors in cancer survivors prescribed LTOT. Second, cancer survivors describe living with chronic cancer-related pain as the cost of survival. Yet, their suffering was often invisible to others. The role of opioids in chronic cancer-related pain leads to strained communication with clinicians and the need to self-navigate a treatment plan characterized by ‘trying everything’. And finally, select cancer-specific psychosocial factors explained relatively little variance in the pain experience compared to non-cancer specific factors of multisite pain and pain catastrophizing. Conclusions: The constellation of the finding from this body of work demonstrates unique factors that inform the chronic cancer-related pain experience in cancer survivors, and several areas of overlap with other chronic pain syndromes. / Thesis (PhD) — Boston College, 2022. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.

Recent research shows that cancer survivors are at greater risk of developing cancer than the general population. Knowledge of the magnitude of second cancer risk and cancer-specific deaths among cancer survivors, factors that influence their second cancer risk, cancer survivors’ perceptions of second cancer risk and current practices and existing gaps in follow-up care is urgently needed if we hope to prepare survivors and their healthcare providers as to how best to monitor their long-term health. An exploratory mixed method study, guided by Kaplan and colleagues (2000) multilevel approach to the health determinants, was conducted to provide a detailed understanding of second cancer risks among cancer survivors. Data collection methods included: (1) qualitative survey of current practices in the follow-up care offered for cancer survivors across Canada, (2) population-based health databases (cancer registry and health insurance databases), and (3) qualitative interviews on cancer survivors’ perceptions of second cancer risks. Coordinated follow-up services are not universally available across Canada. Yet, cancer survivors have a 4-7-fold increased risk of developing cancer compared to the general population in Nova Scotia and Manitoba. Second cancer risks varied by demographic and disease-related factors such as age at first cancer diagnosis, cancer type, treatment era, and time since diagnosis. Second cancer risk does not exist only as an epidemiological calculation. Second cancer risk, from the perspective of cancer survivors, is shaped by more intuitive conceptual models than statistical models of risk. The theme, Life After Cancer – Living with Risk, described survivors’ sense that second cancer risk is now a part of their everyday lives.

Recent research shows that cancer survivors are at greater risk of developing cancer than the general population. Knowledge of the magnitude of second cancer risk and cancer-specific deaths among cancer survivors, factors that influence their second cancer risk, cancer survivors’ perceptions of second cancer risk and current practices and existing gaps in follow-up care is urgently needed if we hope to prepare survivors and their healthcare providers as to how best to monitor their long-term health. An exploratory mixed method study, guided by Kaplan and colleagues (2000) multilevel approach to the health determinants, was conducted to provide a detailed understanding of second cancer risks among cancer survivors. Data collection methods included: (1) qualitative survey of current practices in the follow-up care offered for cancer survivors across Canada, (2) population-based health databases (cancer registry and health insurance databases), and (3) qualitative interviews on cancer survivors’ perceptions of second cancer risks. Coordinated follow-up services are not universally available across Canada. Yet, cancer survivors have a 4-7-fold increased risk of developing cancer compared to the general population in Nova Scotia and Manitoba. Second cancer risks varied by demographic and disease-related factors such as age at first cancer diagnosis, cancer type, treatment era, and time since diagnosis. Second cancer risk does not exist only as an epidemiological calculation. Second cancer risk, from the perspective of cancer survivors, is shaped by more intuitive conceptual models than statistical models of risk. The theme, Life After Cancer – Living with Risk, described survivors’ sense that second cancer risk is now a part of their everyday lives.

The purpose of this study was to explore the types and patterns of occupational therapy services implemented with clients who are cancer survivors, which utilized a mixed methods approach, specifically an explanatory sequential design. The Occupational Therapy Practice Inventory (OTPI) was used to gather information regarding the type and patterns of occupational therapy services provided for clients receiving oncology care. The results of the OTPI were analyzed and used to further develop semi-structured questions for exploring the perspectives of occupational therapy practitioners who practice in the area of oncology in the United States. The data were analyzed to generate a portrayal of occupational therapy practice in oncology settings and examine factors that may be predictors for certain practice approaches. Frequency data indicated that interventions related to activities of daily living were performed most frequently. Phi coefficient indicated strong positive relationships with multiple components of the OTPI. Analysis of the qualitative results were completed by following the principles of grounded theory The data yielded one central phenomenon identified as wanting to provide the best care. Providing the best care was influenced by internal aspects and the external aspects of therapist. The integration of both qualitative and quantitative data supported the findings that interventions, most specifically activities of daily, were the most frequently indicated and discussed services provided by occupational therapy practitioners for cancer survivors in the Northeast, Midwest, and South. The practice of client-centered care and an occupation-based intervention strategy across the continuum of care for individuals who are cancer survivors was supported by the results.

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After cancer patients have completed active cancer treatment, they have specific follow-up care needs. These needs include ongoing surveillance for new and recurring cancers, managing the side effects of cancer treatment, and psychosocial concerns (Rushton et al., 2015). In the past, cancer centres and oncology specialists provided follow-up care; however, new models of care are needed because cancer centres can no longer provide treatment and follow-up care to all cancer survivors (Jefford et al., 2022). To allocate health care resources, low risk cancer survivors (i.e., breast and colorectal cancer survivors) are being discharged from cancer centres after primary treatment back to their primary care provider (PCP) for follow-up care. Survivorship care plans (SCPs) have been identified as a tool to help survivors and their PCPs with this transition (Rushton et al., 2015). SCPs generally consist of a treatment summary, a schedule for follow-up and surveillance tests, and general health recommendations (i.e., diet and exercise; Howell et al., 2011; Ruston et al., 2015). While SCPs are widely accepted, research on their effectiveness as transition tools has been inconclusive (Hill et al., 2019; Jacobsen et al., 2018). Some studies show positive, neutral, and negative impacts of SCP use, and there are three potential reasons for these mixed findings: 1) there is wide variety in the content, format, delivery, and timing of SCPs which adds considerable variance when studying the impact of SCPs; 2) the use of outcomes to measure the usefulness of SCPs as transition tools that are beyond the scope that information about treatment history and follow-up guidelines could impact and; 3) that SCPs are not effective as transition tools (Hill et al., 2019; Jacobsen et al., 2018). An important first step in clarifying whether SCPs are effective transition tools is to understand how SCPs are being used in real world practice (Hill et al., 2019; Jacobsen et al., 2018). The overall purpose of this study was to develop best practice recommendations for implementing SCPs. This was achieved through three study objectives: 1) to comprehensively identify barriers and facilitators perceived to influence SCP use among cancer survivors and primary care providers (PCPs); 2) to identify evidence-based approaches to address barriers and enhance facilitators of SCP use; and 3) to develop best practice recommendations that can be used by implementors of SCPs that are adaptable across different contexts. Article 1 presents the results of semi-structured interviews with breast and colorectal cancer survivors who had received a SCP at least 12 months prior to the interview. The interviews were based on the Theoretical Domains Framework, version two (TDF-2; Cane et al., 2012) and comprehensively identified barriers and facilitators of SCP use amongst breast and colorectal cancer survivors. Thirty cancer survivors (17 female, 13 male) participated in the 30–45-minute interviews, which were then analyzed using content and thematic analysis. Survivors who had received education about the purpose of SCPs and how to use them reported finding their SCP helpful and that they used it to schedule appointments and communicate with their healthcare providers. Barriers to SCP use that were reported by cancer survivors included having lost or not remembering receiving a SCP, not understanding the importance of their SCP, and wanting information about additional supports to be able to follow the SCP (e.g., regular contact from the cancer centre, avenues for peer support). Overall, study 1 found that in order to SCPs to be used as intended transition tools, survivors benefit from receiving education about how to use them and be informed of the expectation that they be actively involved in their follow-up care. Article 2 presents the TDF-based semi-structured interviews with primary care providers (PCPs). Thirteen PCPs completed 15-20 minute interviews, and content and thematic analysis was conducted. PCPs reported finding SCPs helpful and that they contained relevant information to provide follow-up care. A key facilitator of using the SCP was the table of follow-up tasks (e.g., mammography, colonoscopy) and their frequencies included in the SCP. Two significant barriers for PCPs using SCPs were: a) logistical issues with ordering follow-up tests and receiving results; and b) a lack of clear avenues to consult with oncology specialists (e.g., managing side effects of medications, actions that need to be taken when follow-up tests are abnormal). Overall, article 2 showed that PCPs appreciate and readily use SCPs, and contextual changes to facilitate clear avenues of communication between primary and tertiary care may be beneficial when implementing SCPs. Article 3 is a methodology article that presents a detailed explanation and rationale for the implementation science frameworks used and the data analysis chosen. The TDF-2 and Behaviour Change Techniques Taxonomy (BCTTv1; Michie, et al., 2008; Michie et al., 2013). The Human Behaviour Change Project researchers have empirically linked the 14 TDF domains to behaviour change techniques (BCTs), which allowed for multiple options to be developed to address barriers (and promote facilitators) of SCP use among breast and colorectal cancer survivors and PCPs (https://theoryandtechniquetool.humanbehaviourchange.org/tool; Michie et al., 2021). Using the TDF and BCTTv1 showed a dynamic between oncology specialists (e.g., oncologists, oncology nurses), cancer survivors, and PCPs that is involved in ensuring SCPs are implemented in an optimal way. A logic model was used to organize the barriers and enablers into different phases of SCP development, content, delivery, and use by PCPs and cancer survivors in their follow-up care (Mills et al., 2019). A flowchart organizing the recommendations of implementing SCPs was developed, and comprised 10 steps representing interrelationships between cancer centers, PCPs, and cancer survivors. The detailed methodology article also includes lessons learned and suggestions for implementation science researchers using the TDF and BCTTv1. Finally, article 4 is written for anyone looking for guidance implementing SCPs or improving upon how SCPs have been implemented already. It differs from article 3 in that it provides practical solutions for implementers. Because this work generated many recommendations, article 4 provides a worked example of how to use the results of this study. It is written in a way that outlines who would benefit from using the recommendations, and how to use the flow chart to narrow down the recommendation to those most relevant to implementors. The recommendations are organized into one of the 10 relationships in the flow chart, along with the purpose of the recommendations, how to implement it, to whom the recommendation targets, and those responsible for enacting the recommendations. The core factors associated with facilitating SCP use by PCPs and cancer survivors were: a) a treatment summary and follow-up guidelines included in the SCP; b) SCP provided to both cancer survivors and their PCP; and c) educating cancer survivors about their role as self-managers of their own care and the expectation that they participate in their follow-up cancer care. Future research on the usefulness of SCPs in follow-up care should include detailed information about the content, format, and receivers of SCPs and the outcomes most realistically influenced by the information included in SCPs. Before throwing the proverbial baby out with the bathwater, the implementation of SCPs requires additional standardization before meaningful investigation of their effectiveness as transition tools can be conducted.

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