Introduction: Over ten years ago the Saskatchewan Breast Cancer Network (SBCN) was created to work towards better meeting the needs of breast cancer patients and survivors in the province. With funding from the Cancer Program of the Public Health Agency of Canada in June 2009, the SBCN implemented the A Thinking, Learning and Caring Collaboration: Promoting a Healthy Lifestyle program in various communities throughout Saskatchewan.<p> Purpose: The purpose of this study was to evaluate the program implemented in 2009/2010 to: (1) determine to what extent the program was implemented as proposed; and (2) assess to what extent the program met its own goals.<p> Methods: Using a constructivist ethnographic mixed methodology, the data collected included self-report surveys, observational data, and semi-structured interviews, which were conducted with seven members of the Advisory Committee and five breast cancer survivors representing urban, rural, senior, young and Aboriginal demographics. Descriptive analysis was used to tabulate the surveys' results and qualitative analysis followed the structure of the program logic model.<p> Results: The results of this evaluation reveal that the program was implemented as proposed despite unforeseen challenges, which necessitated slight alterations in the timing of events. The program was successful in meeting many of its goals; however, the sustainability of these impacts are unlikely due to the disintegration of the formal Network following the completion of the program.<p> Conclusions: Future research should focus on the role of current medical service providers and grassroots organizations in meeting the needs of breast cancer survivors, beyond treatment for physical symptoms. Evidence surrounding the motivations to adopt healthy choices will facilitate effective program delivery for the diverse group of Canadian breast cancer survivors.

Introduction: Over ten years ago the Saskatchewan Breast Cancer Network (SBCN) was created to work towards better meeting the needs of breast cancer patients and survivors in the province. With funding from the Cancer Program of the Public Health Agency of Canada in June 2009, the SBCN implemented the A Thinking, Learning and Caring Collaboration: Promoting a Healthy Lifestyle program in various communities throughout Saskatchewan.<p> Purpose: The purpose of this study was to evaluate the program implemented in 2009/2010 to: (1) determine to what extent the program was implemented as proposed; and (2) assess to what extent the program met its own goals.<p> Methods: Using a constructivist ethnographic mixed methodology, the data collected included self-report surveys, observational data, and semi-structured interviews, which were conducted with seven members of the Advisory Committee and five breast cancer survivors representing urban, rural, senior, young and Aboriginal demographics. Descriptive analysis was used to tabulate the surveys' results and qualitative analysis followed the structure of the program logic model.<p> Results: The results of this evaluation reveal that the program was implemented as proposed despite unforeseen challenges, which necessitated slight alterations in the timing of events. The program was successful in meeting many of its goals; however, the sustainability of these impacts are unlikely due to the disintegration of the formal Network following the completion of the program.<p> Conclusions: Future research should focus on the role of current medical service providers and grassroots organizations in meeting the needs of breast cancer survivors, beyond treatment for physical symptoms. Evidence surrounding the motivations to adopt healthy choices will facilitate effective program delivery for the diverse group of Canadian breast cancer survivors.

Younger breast cancer survivors often report problems related to sexuality following surgical and adjuvant treatment that often lead to sexual distress and body image distress. This research was conducted as an exploratory study within a larger R01 trial with the purpose to evaluate sexual distress and body image related-distress in younger women with breast cancer and to examine the extent to which the Mindfulness-Based Stress Reduction-Breast Cancer (MBSR(BC)) was efficacious in improving distress related to sexuality, i.e. sexual distress and body image related-distress. The aims of this study were to: 1) evaluate the efficacy of the MBSR(BC) program in improving the psychological symptoms of sexual distress and body image related distress; and 2) evaluate whether positive effects achieved from the MBSR(BC) program are modified by specific patient characteristics measured at baseline. Ninety-one participants were randomized to either the MBSR(BC) intervention or Usual Care (UC) and assessments were conducted at baseline, 6-week and 12-week follow-up for sexual distress, body image related distress, demographic data as well as clinical history. For aim 1, analysis of covariance (ANCOVA) and linear mixed model (LMM) analysis were the methods used to evaluate the efficacy of the MBSR(BC) program. For aim 2, ANCOVA and stepwise multiple linear regression were used to evaluate the patient characteristics at baseline that modified the effects achieved from the MBSR(BC) program. Results showed the mean age of the sample was 57 years and 74% were White, non-Hispanic. Chi square analyses found that there were no significant differences between the MBSR(BC) and UC groups on baseline demographic or clinical characteristics. For Aim 1, results of the ANCOVA analyses found that there was no significant difference between the MBSR(BC) and UC groups at the 6-week follow-up on sexual distress or body image related distress (both p > .05). However, ANCOVA analyses found that there was a significant relationship between baseline scores and scores at the 6-week follow-up for both sexual distress (p < .0001) and body image related distress (p < .0001). Further ANCOVA analyses for Aim 1 found that there was a trend towards a statistical significance for the difference between the MBSR(BC) group and UC groups at the 12-week follow-up for both sexual distress (p = .09) and body image related distress (p = .06). Results of the Linear Mixed Model (LMM) analyses, implemented to assess sexual distress over time, showed a significant main effect (ME) of time (p < .000) and a trend towards significance for the time by assignment interaction (p = .104). The LMM analyses for body image disturbance resulted in a significant ME of (p < .000) and an interaction that approached significance (p = .071). For aim 2, ANCOVA results found that age at baseline was a significant predictor of change at 6 weeks in levels of body image related distress (p = .007), but no relationship was observed for sexual distress. Further, analysis using a stepwise multiple linear regression analysis found age at baseline to be the only significant predictor of both baseline sexual distress (p = .004) and baseline body image related distress (p = .008). Although the MBSR(BC) program was not tailored for integrating sexuality content, results of this stress reducing program (MBSR(BC)) program, adapted for breast cancer survivors, appeared to benefit these young women. The findings of this study identify that there is a need for stress reducing interventions addressing problems related to sexual distress and body image related distress. In addition, these results identified that clinically, BCS should be assessed for sexual distress and body image disturbance post-treatment, and interventions to assist with this distress should be incorporated into their plan of care.

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.

Background: The incidence of cancer is increasing alongside a fall in mortality rates. This has resulted in a growing number of cancer survivors overall, including for colorectal (bowel) cancer. For healthcare services to effectively support recovery and adjustment for survivors and their caregivers, there is a need to develop an understanding of couples’ experiences after treatment. Objectives: The systematic review aimed to identify qualitative research on partners' experiences of cancer care-giving after treatment, and to synthesise findings on partners’ psychological adjustment. The primary qualitative study aimed to explore couples' experiences of colorectal cancer services from the perspectives of patients and their partners, focusing on the transition period after treatment. Methods: For the systematic review, 10 qualitative studies were purposefully sampled to focus on partners’ psychological adjustment post-treatment. Findings from these studies were analysed and synthesised using the Framework approach. For the empirical study, semi-structured interviews were conducted separately with a purposeful sample of 10 participants, comprising five patient-partner dyads. Data were analysed using the Framework approach, incorporating dyadic analysis to compare narratives within and between couples. Results: The synthesis highlighted the importance of considering the patient-caregiver relationship across the cancer trajectory and within the wider context. Specific barriers and facilitators of partners’ adjustment related to communication and cohesion, transitions and gradual changes, as well as healthcare and cultural belief systems. The empirical study identified three overarching themes: the process of recovery, the impact of relationship dynamics, and mixed experiences of healthcare services. An additional discussion chapter provided further comparison of the primary research study with the extant literature. Conclusions: Recovery and adjustment after cancer can be facilitated by a proactive and systemic approach to healthcare. The findings illustrate the significant impact that patients and partners can have on each other and underscore the need for consistency in good clinical practice throughout the recovery process.

The purpose of this cross-sectional, secondary data analysis was to explore, non-modifiable (stable) trait factors and modifiable (transient) state factors associated with fear of recurrence (FOR) in breast cancer survivors. Antecedent trait factors included demographic, clinical, social/behavioral factors, postulated mediator state factors included pain, fatigue, sleep disturbances, depression, state anxiety and perceived stress, and FOR was the outcome variable. The study used baseline data from an R-21 NCI funded (grant #R21CA109168) randomized control trial that examined the effects of mindfulness based stress reduction in early stage breast cancer recovery. Instruments from this study for antecedent variables (trait factors) included a Demographic and Clinical History Form, STAI; instruments used for mediator variable (state factors) included CES-D, STAI, PSS and MDASI subscales for pain and fatigue, sleep; the instruments used for the outcome variable FOR - CARS overall fear and nature of worry. The study sample included 82 women within 18 months post breast cancer treatment (stage 0, I, II, III). The Theoretical Model for psychosocial nursing research was used as a heuristic framework to examine the associations between trait factors and state factors and their mediating effects on FOR. Aim 1 explored the relationship between the antecedent (trait) variables associated with FOR (CARS overall fear and CARS nature of worry) using Pearson's and Spearman's correlations and analysis of variance (ANOVA). The findings revealed a negative association between age and FOR, CARS overall fear (r = -.236, p = .033) and FOR, CARS nature of worry (r = -.269, p = .015). Trait anxiety was positively associated with FOR, CARS overall fear (r = .433, p = .000) and FOR, CARS nature of worry (r = .358, p < 0.001). Race/ethnicity, education, marital status, employment, exercise, cancer stage, cancer treatment, exercise, smoking, drinking, hormone use and family history of breast cancer were not associated with FOR. Aim 2 explored the relationship between postulated mediator (state) variables, such as pain, fatigue, sleep disturbances, state anxiety, depression, perceived stress associated with FOR (CARS overall fear and CARS nature of worry) using Pearson's correlations. Findings revealed that depression (r = .347, p = .001), state anxiety (r = .467, p < 0.001), perceived stress (r = .365, p = .001) were positively associated with FOR, CARS overall fear of recurrence, and that pain (r = .220, p = .047), fatigue (r = .247, p = .025), state anxiety (r = .369, p = .001), and perceived stress (r = .410, p < 0.001) were positively associated with FOR, CARS nature of worry. Aim 3 used a mediation analysis (bootstrapping method) to examine the indirect effects of the statistically significant modifiable mediator state factors on the statistically significant antecedent trait factors and FOR (CARS overall fear and CARS nature of worry). With trait anxiety as the antecedent variable, state anxiety was indirectly associated (a mediating variable) with FOR, CARS overall fear (β = .1381, 95% CI = .0053 - .3050, p = .0299). Similarly, with a composite age/trait anxiety antecedent variable, state anxiety was indirectly associated (a mediating variable) with FOR, CARS overall fear (β = .5579, 95% CI = .1201 - 1.1669, p = .0157). Perceived stress and depression did not mediate the relationship between age and trait anxiety and concerns about recurrence overall fear. With trait anxiety as the antecedent variable, perceived stress was indirectly associated (a mediating variable) with FOR, CARS nature of worry (β = .5474, 95% CI = .0178 - 1.3298, p = .0294). Similarly, a composite age/trait anxiety antecedent variable, perceived stress was indirectly associated (a mediating variable) with FOR, CARS nature of worry (β = 2.0375, 95% CI = .1136 - 4.5976, p = .0495). Pain, fatigue and state anxiety did not mediate the relationship between age and trait anxiety and FOR nature of worry. This study suggests that breast cancer survivors who are anxious at baseline and report a current state of anxiety or perceived stress may be at higher risk for fears of breast cancer recurrence. Understanding the individual patient characteristics such as age, history of anxiety and current status of perceived stress or anxiety and the relationship with fears of recurrence allow nurses to offer individualized interventions for patients at greatest risk for psychological distress.

Purpose: A diagnosis of cancer can be disabling in many ways. Most notably, cancer treatments are toxic and harmful to the body and threaten a person’s ability to care for themselves. In addition, cancer and its treatments can affect many dimensions of quality of life, including peoples’ abilities to engage in meaningful occupations. However, there are many gaps in the literature surrounding rehabilitation and the ways in which the psychosocial effects of cancer may be addressed by individuals. Empowerment is a concept used to articulate processes of rehabilitation that involves addressing both functional concerns as well as quality of life issues. Yet, empowerment remains a phenomenon not well understood. It is most often defined as a process and outcome of regaining a sense of control and autonomy that is lost due to an illness, but much of the empowerment literature in the context of cancer is written from the perspective of the health care provider. This perspective fails to recognize the processes through which survivors address functional and quality of life concerns leaving a gap in theory and evidence based practice in cancer rehabilitation. The purpose of this dissertation was to develop a grounded theory of empowerment to illuminate its associated processes from the perspective of cancer survivors to answer the following questions: 1) In what ways do cancer survivors define, describe and/or experience the processes of empowerment?; 2) How do cancer survivors describe the emergence of empowerment within various contexts and relationships related to their illness; 3) What are the connections and relationships between processes of empowerment and the commonly held assumptions about this phenomenon? Methods: Data collection consisted of 22 semi-structured interviews with cancer survivors (cancer of the head or neck and/or breast). Interviews explored participants’ illness experiences and views of empowerment. I used the social constructivist grounded theory method to analyze and map the processes of empowerment. Summary of Results: Empowerment reflects multiple complex processes. Broadly, empowerment occurred in two dynamic and paradoxical ways. First, empowerment was associated with establishing control over the treatment, management and impact of the illness on participants’ daily lives as a means to circumvent a sense of self that was eroding and changing. Secondly, empowerment was described as processes associated with relinquishing control over aspects of the illness deemed irrepressible and incorporating those aspects into a new identity. Conclusion: These two processes illustrate the paradox embedded within experiences of empowerment. The first process is comparable to current evidence-based practice in cancer rehabilitation that has a dominant focus on symptom control to reduce the impact of the illness on daily life. Gaps are more significant in relation to the empowerment processes associated with relinquishing control. These processes enabled survivors to acknowledge and accept the impact of illness as another way to address functional and quality of life concerns. Thus, my findings suggest that there is a need to design a variety of interventions that help cancer survivors live with and adapt to the effects of illness into daily living.

Indiana University-Purdue University Indianapolis (IUPUI) / Testicular cancer is the most common solid tumor among young men. Although testicular cancer survivors (TCS) are expected to live for over 40 years after cancer diagnosis, they are at risk for chemotherapy adverse effects such as hearing loss (HL), tinnitus, and psychosocial effects. The aim of this study was to investigate factors associated with discrepancies between subjective and objective HL, factors associated with HL, and factors associated with the use of medications for anxiety/depression. TCS were enrolled in the Platinum Study. Sociodemographic characteristics, health behaviors, morbidities, and prescription medications were assessed though self-reporting using validated questionnaires. Bilateral pure-tone air conduction thresholds were collected at frequencies 0.25-12 kHz. To assess HL severity, hearing thresholds were classified according to American Speech-Language-Hearing Association criteria. Multivariable multinomial, ordinal, and binomial logistic regressions were used to test factors for association with discrepancy between subjective and objective HL, cisplatin-induced HL, and use of medications for anxiety/depression, respectively. Patients with HL at only extended high frequencies (10-12 kHz) could perceive hearing deficits; thus, it would be preferable for these frequencies to be included in audiometric assessments of cisplatin-treated adult-onset cancer survivors. Age, no noise exposure, and mixed/conductive HL were significantly associated with more underestimation of HL severity. Hearing aid use and education were significantly associated with less underestimation of HL severity. Having tinnitus was associated with more overestimation of HL severity. Age, cumulative cisplatin dose, and hypertension showed significant association with greater HL severity, whereas post-graduate education was associated with less HL severity. Factors associated with more use of medications for anxiety/depression were tinnitus, and peripheral sensory neuropathy, while being employed and engaging in physical activity were significantly associated with less use of anxiety/depression medications. The sole use of patient-reported measures of HL might not be well-suited to evaluate HL in cancer survivors; thus, the use of audiometry may complement patient-reported HL. In terms of modifiable risk factors of cisplatin-induced HL, healthcare providers should monitor patients’ blood pressure and manage hypertension appropriately. In addition, healthcare providers need to effectively manage tinnitus and peripheral neuropathy to improve treatment outcomes of anxiety and depression. / 2022-05-19

Introduction: The increased survival rates of children with brain tumors is the result of decades of advancement in diagnostic and therapeutic approaches, but brought the adverse long-term effects of the treatments and tumors on these children into focus. Survivors of childhood brain tumors (SCBT) are at an increased risk of cardiometabolic disorders and premature mortality. Obesity and excess adiposity are well-established risk factor for cardiometabolic risk in the general population, but its contribution to these outcomes in survivors is unknown. More recently, adiposity has emerged as a more robust predictor of cardiometabolic risk than body mass index, the most clinically used measure of obesity. The current thesis pursued four objectives: 1) to determine the prevalence of obesity and excess adiposity in SCBT 2) to explore adiposity and its determinants in SCBT 3) to investigate the determinants of obesity in SCBT and 4) to identify potentially effective interventions to manage obesity in SCBT. Methods: Systematic reviews and meta-analyses were used to evaluate the prevalence and interventions for overweight and obesity in SCBT while the determinants of adiposity and obesity were explored using primary data and regression analyses. General health information and brain tumors information were collected with standardized questionnaires and review of medical records. The overweight or obesity status of subjects was determined by body mass index (BMI), and adiposity profile was evaluated using percent body fat (%FM), waist-to-hip ratio (WHR) and waist-to-height ratio (WHtR). Results: The results show no difference between the overweight and obesity rates in SCBT and non-cancer controls. However, SCBT have higher total and central adiposity. Birth weight is found to be a predictor of future BMI in SCBT, while a higher total adiposity in SCBT is predicted by having supratentorial tumors and receiving radiotherapy. Lastly, not enough evidence is available to conclude the effectiveness of lifestyle interventions, pharmacotherapy, and bariatric surgery on managing obesity in SCBT. Conclusions: Obesity, determined by BMI, is not enough to determine cardiometabolic risks in SCBT. Total and central adiposity should be measured as well to identify high-risk group. Special attention should be paid to SCBT with high birth weight, supratentorial tumors, and having received radiotherapy. Lastly, more randomized controlled trials are needed to provide high-quality evidence to determine the effectiveness of interventions to manage obesity and improve outcomes in SCBT. / Thesis / Master of Science (MSc) / Brain tumors are the most common solid tumors in children. The survival rates among children with brain tumors have increased significantly over the past four decades due to advances in early detection and treatment. However, these children are at increased risk of heart disease and type 2 diabetes, and early death. Evidence has suggested obesity and excess body fat as main reasons for cardiometabolic disorders in the general population, but it is not known if obesity and excess body fat contribute to diabetes and heart disease in survivors. Therefore, the current thesis aims to explore obesity and adiposity, their predictors and any existing treatments available to survivors of childhood brain tumors (SCBT) to see if outcomes can be improved. The results show that while survivors of childhood brain tumors have similar overweight and obesity rates to the general population when measured by the most common clinical measure, called body mass index (BMI), they in fact have higher fat mass. Furthermore, we identified birth weight as a predictor of obesity while the location of the tumors and receiving radiation therapy as predictors of the fat mass in SCBT. The results also show the lack of current effective interventions to manage obesity in SCBT. This data is critical to consider in the design and implementation of strategies to reduce heat disease and diabetes in survivors to improve their quality of life and lifespan.

Survivorship care for a patient with cancer is often complex and requires a multidisciplinary approach. Cancer and its treatment can have late and long-term physical and psychosocial effects. After the acute and intense period of treatment and surveillance administered by oncology teams, cancer survivors slowly transition care to primary providers. Cancer survivors then enter into an extended phase of survivorship whether they are cancer-free, in remission, or living with cancer. In this phase, symptoms related to cancer and its treatment may vary over time. Developing a care plan can facilitate the transition of care between all providers taking care of cancer patients.