Creating meaning: the cancer survivorship experiences of young adults in Australia, England and the United States

This cross-cultural research examined the phenomenon of cancer survivorship through an analysis of the experiences of adolescents and young adults diagnosed with cancer in Australia, England and the United States of America. The research enhances understanding of how meaning and identity develop in relation to cancer interpretively and socioculturally, and the implications for quality of life in adulthood. In so doing, the study explored the existential challenges young people confront when negotiating illness, identity formation and meaning-making, amid the complex matrix of youth and life stage transitions, cultural norms and practices, and varied healthcare environments.

Exercise and cancer survivorship

Exercise has been identified as an integral component of comprehensive survivorship care and a promising adjuvant therapy to aid in the management of cancer. Leading organisations worldwide now advocate exercise for cancer survivors. Here we briefly review the existing evidence for exercise and survivorship, as well as current research endeavours in Australia. Discussion extends to identify the gaps between research and practice, as well as future research directions needed to drive the field forward. With continued efforts by scientists, clinicians and consumers, there is real potential to strengthen the nexus between scientific evidence and clinical practice and integrate exercise into standard cancer care.

Web Psychosocial Surveys in Cancer Survivorship— A Methodological Note

The number of Internet surveys is increasing, and there is a need to examine critically their value in psychosocial cancer care research. This study explored the use of an online method of recruiting and surveying people affected by cancer. An online survey was designed to measure the health status and service needs of adult cancer survivors and caregivers. The online survey received 491 page visits; only 5% of visitors (13 survivors and 14 cancer caregivers) completed the online questionnaire. The average age of survivors and caregivers was 43 and 42 years, respectively. The majority of survivor and caregiver online respondents were female (23/27, 85%) and had been affected by cancer between 1 and 3 years previously (16/27, 59%). Our online research did not appear to be an effective method for recruiting and surveying the psychosocial health of cancer survivors. This study identified potential pitfalls and obstacles of online cancer care surveys particularly in relation to the age of cancer survivors, access to the Internet and the need to ensure surveys are easily and immediately accessible. Future Internet surveys should pay particular attention to the need to advertise and improve survey access via targeted and tailored techniques.

Conquering and coping with the "Big C" : a phenomenological study of exceptional cancer survivorship

A study of the healing journeys of cancer survivors. The research questions were: "Do cancer survivors have anything in common?" "Is there such a phenomenon as cancer survivorship?" Ten exceptional survivors were interviewed in depth and their stories were analysed for themes. These themes were Overcoming issues of commitment, challenge, control, caring and confidence. The thesis also explores the issues of obstacles to survivorship. These were couses, costs and controversies. The conclusion is that healing journeys will never be prescriptive but that they will always be possible.

Collaborative Research in Childhood Cancer Survivorship: The Current Landscape.

Survivors of childhood cancer carry a substantial burden of morbidity and are at increased risk for premature death. Furthermore, clear associations exist between specific therapeutic exposures and the risk for a variety of long-term complications. The entire landscape of health issues encountered for decades after successful completion of treatment is currently being explored in various collaborative research settings. These settings include large population-based or multi-institutional cohorts and single-institution studies. The ascertainment of outcomes has depended on self-reporting, linkage to registries, or clinical assessments. Survivorship research in the cooperative group setting, such as the Children's Oncology Group, has leveraged the clinical trials infrastructure to explore the molecular underpinnings of treatment-related adverse events, and to understand specific complications in the setting of randomized risk-reduction strategies. This review highlights the salient findings from these large collaborative initiatives, emphasizing the need for life-long follow-up of survivors of childhood cancer, and describing the development of several guidelines and efforts toward harmonization. Finally, the review reinforces the need to identify populations at highest risk, facilitating the development of risk prediction models that would allow for targeted interventions across the entire trajectory of survivorship.

Challenges, Strengths and Opportunities Related to Implementing Comprehensive Evidence-Based Guidelines on Breast Cancer Survivorship Care by Primary Care Physicians and Nurse Practitioners in Southeastern Ontario

Background Many breast cancer survivors continue to have a broad range of physical and psychosocial problems after breast cancer treatment. As cancer centres move forward with earlier discharge of stable breast cancer survivors to primary care follow-up it is important that comprehensive evidence-based breast cancer survivorship care is implemented to effectively address these needs. Research suggests primary care providers are willing to provide breast cancer survivorship care but many lack the knowledge and confidence to provide evidence-based care. Purpose The overall purpose of this thesis was to determine the challenges, strengths and opportunities related to implementing comprehensive evidence-based breast cancer survivorship guidelines by primary care physicians and nurse practitioners in southeastern Ontario. Methods This mixed-methods research was conducted in three phases: (1) synthesis and appraisal of clinical practice guidelines relevant to provision of breast cancer survivorship care within the primary care practice setting; (2) a brief quantitative survey of primary care providers to determine actual practices related to provision of evidence-based breast cancer survivorship care; and (3) individual interviews with primary care providers about the challenges, strengths and opportunities related to provision of comprehensive evidence-based breast cancer survivorship care. Results and Conclusions In the first phase, a comprehensive clinical practice framework was created to guide provision of breast cancer survivorship care and consisted of a one-page checklist outlining breast cancer survivorship issues relevant to primary care, a three-page summary of key recommendations, and a one-page list of guideline sources. The second phase identified several knowledge and practice gaps, and it was determined that guideline implementation rates were higher for recommendations related to prevention and surveillance aspects of survivorship care and lowest related to screening for and management of long-term effects. The third phase identified three major challenges to providing breast cancer survivorship care: inconsistent educational preparation, provider anxieties, and primary care burden; and three major strengths or opportunities to facilitate implementation of survivorship care guidelines: tools and technology, empowering survivors, and optimizing nursing roles. A better understanding of these challenges, strengths and opportunities will inform development of targeted knowledge translation interventions to provide support and education to primary care providers.

Challenges, Strengths and Opportunities Related to Implementing Comprehensive Evidence-Based Guidelines on Breast Cancer Survivorship Care by Primary Care Physicians and Nurse Practitioners in Southeastern Ontario

Background Many breast cancer survivors continue to have a broad range of physical and psychosocial problems after breast cancer treatment. As cancer centres move forward with earlier discharge of stable breast cancer survivors to primary care follow-up it is important that comprehensive evidence-based breast cancer survivorship care is implemented to effectively address these needs. Research suggests primary care providers are willing to provide breast cancer survivorship care but many lack the knowledge and confidence to provide evidence-based care. Purpose The overall purpose of this thesis was to determine the challenges, strengths and opportunities related to implementing comprehensive evidence-based breast cancer survivorship guidelines by primary care physicians and nurse practitioners in southeastern Ontario. Methods This mixed-methods research was conducted in three phases: (1) synthesis and appraisal of clinical practice guidelines relevant to provision of breast cancer survivorship care within the primary care practice setting; (2) a brief quantitative survey of primary care providers to determine actual practices related to provision of evidence-based breast cancer survivorship care; and (3) individual interviews with primary care providers about the challenges, strengths and opportunities related to provision of comprehensive evidence-based breast cancer survivorship care. Results and Conclusions In the first phase, a comprehensive clinical practice framework was created to guide provision of breast cancer survivorship care and consisted of a one-page checklist outlining breast cancer survivorship issues relevant to primary care, a three-page summary of key recommendations, and a one-page list of guideline sources. The second phase identified several knowledge and practice gaps, and it was determined that guideline implementation rates were higher for recommendations related to prevention and surveillance aspects of survivorship care and lowest related to screening for and management of long-term effects. The third phase identified three major challenges to providing breast cancer survivorship care: inconsistent educational preparation, provider anxieties, and primary care burden; and three major strengths or opportunities to facilitate implementation of survivorship care guidelines: tools and technology, empowering survivors, and optimizing nursing roles. A better understanding of these challenges, strengths and opportunities will inform development of targeted knowledge translation interventions to provide support and education to primary care providers.

What are the barriers of quality survivorship care for haematology cancer patients? Qualitative insights from cancer nurses

Purpose: Many haematological cancer survivors report long-term physiological and psychosocial effects beyond treatment completion. These survivors continue to experience impaired quality of life (QoL) as a result of their disease and aggressive treatment. As key members of the multidisciplinary team, the purpose of this study is to examine the insights of cancer nurses to inform future developments in survivorship care provision. Methods: Open text qualitative responses from two prospective Australian cross-sectional surveys of nurses (n=136) caring for patients with haematological cancer. Data were analysed thematically, using an inductive approach to identify themes. Results: This study has identified a number of issues that nurses perceive as barriers to quality survivorship care provision. Two main themes were identified; the first relating to the challenges nurses face in providing care (‘care challenges’), and the second relating to the challenges of providing survivorship care within contemporary health care systems (‘system challenges’). Conclusions: Cancer nurses perceive the nature of haematological cancer and its treatment, and of the health care system itself, as barriers to the provision of quality survivorship care. Care challenges such as the lack of a standard treatment path and the relapsing or remitting nature of haematological cancers may be somewhat intractable, but system challenges relating to clearly defining and delineating professional responsibilities and exchanging information with other clinicians are not. Implications for Cancer Survivors: Addressing the issues identified will facilitate cancer nurses’ provision of survivorship care, and help address haematological survivors’ needs with regard to the physical and psychosocial consequences of their cancer and treatment.

Prevalence and determinants of the health promotion and risk reduction practices of younger female survivors of breast cancer

This thesis describes a discrete component of a larger mixed-method (survey and interview) study that explored the health-promotion and risk-reduction practices of younger premenopausal survivors of ovarian, breast and haematological cancers. This thesis outlines my distinct contribution to the larger study, which was to: (1) Produce a literature review that thoroughly explored all longer-term breast cancer treatment outcomes, and which outlined the health risks to survivors associated with these; (2) Describe and analyse the health-promotion and risk-reduction behaviours of nine younger female survivors of breast cancer as articulated in the qualitative interview dataset; and (3) Test the explanatory power of the Precede-Proceed theoretical framework underpinning the study in relation to the qualitative data from the breast cancer cohort. The thesis reveals that breast cancer survivors experienced many adverse outcomes as a result of treatment. While they generally engaged in healthy lifestyle practices, a lack of knowledge about many recommended health behaviours emerged throughout the interviews. The participants also described significant internal and external pressures to behave in certain ways because of the social norms surrounding the disease. This thesis also reports that the Precede-Proceed model is a generally robust approach to data collection, analysis and interpretation in the context of breast cancer survivorship. It provided plausible explanations for much of the data in this study. However, profound sociological and psychological implications arose during the analysis that were not effectively captured or explained by the theories underpinning the model. A sociological filter—such as Turner’s explanation of the meaning of the body and embodiment in the social sphere (Turner, 2008)—and the psychological concerns teased out in Mishel’s (1990) Uncertainty in Illness Theory, provided a useful dimension to the findings generated through the Precede-Proceed model. The thesis concludes with several recommendations for future research, clinical practice and education in this context.

A prospective surveillance model for rehabilitation for women with breast cancer

Background: The current model of care for breast cancer is focused on disease treatment followed by ongoing recurrence surveillance. This approach lacks attention to the patients’ physical and functional well-being. Breast cancer treatment sequelae can lead to physical impairments and functional limitations. Common impairments include pain, fatigue, upper extremity dysfunction, lymphedema, weakness, joint arthralgia, neuropathy, weight gain, cardiovascular effects, and osteoporosis. Evidence supports prospective surveillance for early identification and treatment as a means to prevent or mitigate many of these concerns. Purpose: This paper proposes a prospective surveillance model for physical rehabilitation and exercise that can be integrated with disease treatment to create a more comprehensive approach to survivorship health care. The goals of the model are to promote surveillance for common physical impairments and functional limitations associated with breast cancer treatment, to provide education to facilitate early identification of impairments, to introduce rehabilitation and exercise intervention when physical impairments are identified and to promote and support physical activity and exercise behaviors through the trajectory of disease treatment and survivorship. Methods: The model is the result of a multi-disciplinary meeting of research and clinical experts in breast cancer survivorship and representatives of relevant professional and advocacy organizations. Outcomes: The proposed model identifies time points during breast cancer care for assessment of and education about physical impairments. Ultimately, implementation of the model may influence incidence and severity of breast cancer treatment related physical impairments. As such, the model seeks to optimize function during and following treatment and positively influence a growing survivorship community.

Women’s perceptions of their lifestyle and quality of life several years after a diagnosis of endometrial cancer

Background Few studies have examined the long-term changes experienced by women treated for endometrial cancer. Objective The objectives of this study were to describe what women perceived important to their lifestyle and quality of life in the years following their diagnosis and to provide new insights that might inform healthcare practice. Methods This was a thematic analysis of 237 open-ended comments from Australian women diagnosed with endometrial cancer 3 to 5 years previously. Results We identified 3 main themes: (1) personal change, in which women spoke about cancer as permanently altering their lives in mostly negative but sometimes positive ways; (2) continuity of former life, which described both the minimal impact of cancer on women's lives and identities and the difficulties negotiating this within the dominant "cancer survivorship" culture; (3) social support, where women wrote about how the quality of their relationships shaped their cancer trajectory. Conclusions While typical "survivorship" issues exist for many women with endometrial cancer (eg, physical, emotional, sexual health changes), a proportion of women will not be focused on their cancer and can be encouraged to form lives and identities that are not situated within the "cancer survivorship" culture. Implications for Practice A network of support, sensitive to women's responses to having cancer, may benefit women's long-term adjustment. Regular standardized assessment of women's needs may facilitate appropriate support for those with concerns, whereas those without concerns could be reassured by health professionals that their experience is normal and shared by other people with cancer. This may encourage women to form lives that are personally meaningful.

Weight and weight change following breast cancer : evidence from a prospective, population-based, breast cancer cohort study

Background: While weight gain following breast cancer is considered common, results supporting these findings are dated. This work describes changes in body weight following breast cancer over 72 months, compares weight with normative data and explores whether weight changes over time are associated with personal, diagnostic, treatment or behavioral characteristics. Methods: A population-based sample of 287 Australian women diagnosed with early-stage invasive breast cancer was assessed prospectively at six, 12, 18 and 72 months post-surgery. Weight was clinically measured and linear mixed models were used to explore associations between weight and participant characteristics (collected via self-administered questionnaire). Those with BMI changes of one or more units were considered to have experienced clinically significant changes in weight. Results: More than half (57%) of participants were overweight or obese at 6 months post-surgery, and by 72 months post-surgery 68% of women were overweight or obese. Among those who gained more weight than age-matched norms, clinically significant weight gain between 6 and 18 months and 6 and 72 months post-surgery was observed in 24% and 39% of participants, respectively (median [range] weight gain: 3.9kg [2.0-11.3kg] and 5.2kg [0.6-28.7], respectively). Clinically-significant weight losses were observed in up to 24% of the sample (median [range] weight loss between 6 and 72 months post-surgery: -6.4kg [-1.9--24.6kg]). More extensive lymph node removal, being treated on the non-dominant side, receiving radiation therapy and lower physical activity levels at 6 months was associated with higher body weights post-breast cancer (group differences >3kg; all p<0.05). Conclusions: While average weight gain among breast cancer survivors in the long-term is small, subgroups of women experience greater gains linked with adverse health and above that experienced by age-matched counterparts. Weight change post-breast cancer is a contemporary public health issue and the integration of healthy weight education and support into standard breast cancer care has potential to significantly improve the length and quality of cancer survivorship.

Survivorship care provision for patients with hematologic malignancies: The quest for quality evidence

This is an editorial that depicts the importance for developing more quality evidence to guide the survivorship care provision for patients with hematologic malignancies. Treatments for hematologic malignancies are often complex and debilitating, with increased risk of immune suppression and infections1. Some patients receive allogeneic stem cell transplantation that often requires in-patient stay of several weeks and life-long medical follow up. In recent years, advances in treatment regimens, and an aging population saw an increasing number of patients living with a hematologic malignancies or surviving curative therapy.2 The increased use of targeted therapies in hematologic malignancies (e.g. rituximab for non-Hodgkin lymphoma, bortezomib in multiple myeloma and imatinib in Chronic Myelogenous Leukemia has also resulted in improved overall survival...

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.