Over 1 million Americans are diagnosed with cancer in a given year and currently there are approximately 12 million cancer survivors in the United States. With improved detection strategies and medical advances, the number of cancer survivors continues to rise, making survivorship care an increasingly important phase along the continuum of cancer care. The purpose of the current study was to investigate the emerging field of survivorship care, including care planning and follow-up, in survivors of different types of cancer. We quantitatively evaluated the post-treatment care received by 123 cancer survivors, including the use of survivorship care plans and the impact of these care plans and subsequent follow-up on a variety of behavioral health outcomes. We qualitatively assessed survivorship care providers' (n = 8) perspectives on comprehensive survivorship care and experiences delivering post-treatment services. The majority of participants (54%) are receiving a moderate level of survivorship care, including minimal receipt of a written care plan (31%) and some amount of referrals for mental health, diet, and physical activity (28%). Results suggest significantly lower general psychological distress (F [1, 104] = 8.316, p = .005) and higher coping self-efficacy (F [1, 104] = 6.627, p = .011) for those who received some form of written care plan versus those who did not. These results imply that written care plan documents have the potential to lead to higher psychosocial functioning for survivors of cancer. The qualitative data provide initial evidence supporting the value of SCPs for patients and providers. Critical barriers to implementation of comprehensive survivorship care and SCPs, from the providers' perspective, include the fragmented healthcare system and resources. The current study is an important step toward increasing knowledge of and potential intervention targets to improve cancer survivorship experiences – from both the patients' and providers' perspectives. Future directions include developing a standardized system for delivering survivorship care and SCPs, and increasing the evidence base to examine the impact of SCPs on short- and long-term patient-reported and clinical outcomes, increase the focus on patient-centered care, and explore the impact of SCPs delivered to vulnerable groups of survivors. / Ph. D.

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.