From bystander to enlisted carer - A qualitative study of the experiences of caregivers of patients attending follow-up after curative treatment for cancers in the pancreas, duodenum and bile duct.

PURPOSE: Caregivers of patients with cancer play an important role throughout the treatment trajectory. This can be challenging and might infer health and psychosocial problems. This may especially be the case in caregivers of patients with cancers that carry a high risk of recurrence such as cancers of the pancreas, duodenum and bile duct. This study therefore explored the experiences of caregivers of patients attending follow-up after completion of treatment with curative intent for cancers of the pancreas, duodenum and bile duct. METHODS: A qualitative study using semi-structured, individual interviews. Data were analysed using content analysis. RESULTS: Ten caregivers of patients attending follow-up after completed curative treatment for cancers of the pancreas, duodenum and bile duct in a specialized gastro-surgical center at a tertiary hospital in the Capital Region of Denmark participated. We identified three themes: "From bystander to enlisted carer", inferring that caregivers felt enlisted as carers during treatment and follow-up, however without sufficient instruction or assessment of their needs. "Lonesome worrying" meaning that caregivers hid their feelings of concern and foreboding, and finally, "Keeping a stiff upper lip" indicating that caregivers outwardly maintained a positive face when interacting with the patient. CONCLUSION: Caregivers described taking on a substantial burden of care without feeling competent. They experienced distress and emotional isolation which affected their relationship with the patient and their mutual coping. The results indicate a need for health care professionals to facilitate reflection on the needs and roles of both patients and caregivers throughout the treatment trajectory.

Specialist breast cancer nurses' views on implementing a fear of cancer recurrence intervention in practice: a mixed methods study.

INTRODUCTION: Fear of cancer recurrence (FCR) in people with breast cancer affects treatment recovery, quality of life, service utilisation and relationships. Our aim was to investigate how specialist breast cancer nurses (SBCN) respond to their patients' fears of cancer recurrence and analyse SBCN's views about embedding a new psychological intervention, the Mini-AFTERc, into their consultations. METHOD: A mixed methods sequential design was used, informed by normalisation process theory. Phase 1: UK SBCNs were emailed a web-based survey to investigate how breast cancer survivors' FCR is currently identified and managed, and their willingness to utilise the Mini-AFTERc. Phase 2: a purposive sample of respondents (n = 20) were interviewed to augment phase 1 responses, and explore views on the importance of addressing FCR, interest in the Mini-AFTERc intervention, its content, skills required and challenges to delivering the intervention. RESULTS: Ninety nurses responded to the survey. When SBCN's were asked to identify the proportion of patients experiencing FCR in their caseload, there was no consensus on the size of the problem or unmet need. They estimated that 20-100% people experience moderate FCR and 10-70% severe FCR. The interviews identified that clinical conversations are focused primarily on giving information about signs and symptoms of recurrence rather than addressing the psychological aspects of fear. CONCLUSION: Findings indicate wide variability in how FCR was identified, assessed and supported by a sample of UK SBCNs. The introduction of a structured intervention into practice was viewed favourably and has implications for nursing and health professional ways of working in all cancer services.

[Experience Using Oncology Nurse Navigation to Help the Psychological Adjustment of an Outpatient With Rare Tumor Recurrence].

Oncology Nurse Navigation is a professional service that integrates complex medical care procedures and promotes patient awareness of the major nursing problems. Using pre-assessment strategies and the integration of medical care information, Nurse Navigators help patients and their families gain comprehensive medical information and nursing care guidance from their initial post-diagnosis visit to their follow-up visits after remission. This article describes the author's experience with a 53-year-old married overseas Chinese woman who had been diagnosed with a rare tumor, PEComa, and who had traveled to Taiwan for treatment. During the outpatient care period with tumor progression, in addition to disease-related psychological and physical discomfort and pain, the prolonged uncertainty regarding treatment had induced adjustment difficulties and psychological symptoms in the patient. The patient's husband continued to work at his job in order to support the family's finances and was not able to maintain a close understanding of his wife's situation. He developed emotional stress when he saw his wife's disease relapse. The authors used Oncology Nurse Navigation approaches to actively assess the needs of the patient and her spouse, to explore their psychological state using emotional assessment scales, to understand the impact of recurrence on the family, to provide available resources and information, to help the couple learn to cope with psychological adjustment symptoms, to enhance their cognitive understanding of the disease, and to learn useful measures that helped them regain physical control, control over the treatment process, and effectively adapt to the disease and its effects. The authors' experience using Oncology Nurse Navigation with this patient may serve as a reference for healthcare professionals to facilitate the proactive assessment of patient needs at different stages of outpatient care, to remove barriers to seeking medical care through early interventions, and to implement a comprehensive and patient-centered approach to cancer treatment that may improve cancer treatment efficacy and quality of care.

High efficacy and patient satisfaction with a nurse-led colorectal cancer surveillance programme with 10-year follow-up.

BACKGROUND: Surveillance after colorectal cancer resection remains contentious, and faces several contemporary issues. Patient-centred care, intensive surveillance programmes and patient complexity increase the burden of surveillance on consultant-led clinics. Recent years have seen reshaping of nursing roles to meet healthcare demand. Nurse-led follow-up after colorectal cancer has been piloted, but not validated. We report outcomes from a nurse-led colorectal cancer surveillance clinic functioning in our institution since 2008, the longest term follow-up in the published literature. METHODS: Included patients were surveilled through the clinic from 2008 to 2018 by credentialled nurses who performed history, examination and investigations as per the local protocol. Demographic, tumour-related, outcome-related and patient satisfaction data were extracted from a prospectively maintained database. Primary outcomes were compliance with surveillance protocol and patient satisfaction. RESULTS: A total of 138 patients were included in the analysis. Mean time in surveillance was 25.4 months. Surveillance investigation protocol compliance was 97.4% overall. Five recurrences (3.6%) were detected during surveillance. In patients who developed recurrence, protocol compliance was 100%, and no clinical features of recurrence were newly found when patients were reviewed by a consultant surgeon. All recurrences during surveillance were detected by nursing staff. Response rate to the patient satisfaction survey was 90%. 96.3% of patients reported receiving adequate explanation regarding cancer surveillance and nurse-led care. 90.7% of patients rated the clinic as 'excellent' and 9.3% as 'good'. CONCLUSION: Our results show a high level of efficacy and patient satisfaction associated with a nurse-led colorectal cancer surveillance clinic over a prolonged time period, the longest in the published literature.

Patient Perceptions of Survivorship Care Plans: A Mixed-Methods Evaluation.

PURPOSE: To understand the perceptions of patients with cancer regarding the role and purpose of a survivorship care plan (SCP) to inform content and delivery opportunities. PARTICIPANTS & SETTING: A mixed-methods evaluation was conducted among patients at a survivorship clinic for high-risk survivors of sarcomas in an academic medical center. METHODOLOGIC APPROACH: An electronic survey was administered, followed by qualitative telephone interviews. FINDINGS: 51 surveys were delivered, and 23 surveys were completed. Eight telephone interviews were completed. Content analysis revealed that participants value the SCP as a health management tool to address information needs and reduce fear of recurrence. Few participants shared their SCP with other healthcare providers. IMPLICATIONS FOR NURSING: Patients use their SCP as a health management tool to understand the details of their cancer history and treatment and to manage their health concerns. Nurses who care for patients with cancer are well positioned to use the SCP as a patient education tool.

Head and Neck Cancer: Identifying Depression as a Comorbidity Among Patients.

Patients with head and neck cancer (HNC) are at high risk for developing depressive symptoms and a major depressive disorder as comorbidities. Depression can affect quality of life (QOL), with data indicating an associated increased risk of recurrence and mortality for patients with HNC. The purpose of this article is to urge oncology nurses to consider depression as an important comorbidity in the care plan for patients with HNC. Resources allocated for depression prevention and screening can decrease symptoms, the incidence of suicidal ideation, and healthcare-associated costs while improving QOL and mortality.

Conversations With Patients: A Recipe for Providing Better, More Personalized Care.

The best gift a patient ever gave me was a recipe. It was handwritten on a small piece of lined paper, all in capital letters. The recipe was for zucchini bread and was given to me by Mr. S, a lung cancer survivor in his early 80s who I had been following in the cancer survivorship clinic that I started at the VA where I work in New England. He came to see me every three to six months for clinic visits and computed tomography scans to monitor for recurrence of his lung cancer.

Bladder cancer: overview and disease management. Part 1: non-muscle-invasive bladder cancer.

Part 1 of this two-part article provides an overview of bladder cancer and discusses its management. Since publication of a previous article entitled 'Understanding the role of smoking in the aetiology of bladder cancer' ( Anderson, 2009 ), the author has received many requests for an update. This article provides an overview of bladder cancer and its current management practices, underlining the continued role of smoking as the predominant risk factor in the disease's development. The management of bladder cancer is governed by specific guidelines. Management of non-muscle-invasive cancers, including surgical intervention with transurethral resection, and intravesical therapy using chemotherapy and immunotherapy agents, is discussed. Cystectomy (removal of the bladder), is sometimes necessary. Treatments are effective in reducing tumour recurrence, but the effects of the risks and side-effects on the individual's quality of life can be significant. The prevalence of bladder cancer, and the nature of its management make this cancer one of the most expensive for the NHS to treat. The effectiveness of health promotional strategies in increasing peoples' awareness of their risk of developing the disease, and in enabling them to change long-term health behaviours is discussed. The role of the multidisciplinary team is explored, along with that of the uro-oncology cancer nurse specialist. Part 2 will consider the management of muscle-invasive and metastatic bladder cancer.

The Hidden Morbidity of Cancer: Burden in Caregivers of Patients with Brain Metastases.

Caregiving is a highly individualized experience. Although numerous articles have been published on caregiver burden from a variety of diagnoses and conditions, this article presents the unique features of caregiving in patients with brain metastases. Improved long-term survival, concerns about disease recurrence or progression, the cancer experience (initial diagnosis, treatment, survivorship, recurrence, progression, and end of life), and the increasing complexity of cancer treatments add to the demands placed on the caregivers of patients with brain metastases. Health care professionals must identify caregiver burden and administer the appropriate interventions, which must be as unique and individualized as the caregivers' experiences.

Assessing patient outcomes and cost-effectiveness of nurse-led follow-up for women with breast cancer - have relevant and sensitive evaluation measures been used?

AIMS AND OBJECTIVES: To explore how interventions using nurse-led follow-up in breast cancer care have been evaluated with a focus on patient outcomes and cost-effectiveness. BACKGROUND: As part of the advancement of breast care, nurse-led follow-up is increasingly used as an alternative to routine hospital follow-up in outpatient clinics. There is evidence suggesting that patients appear to be satisfied with the nurse-led follow-up, but there is a lack of evidence of whether this perception equates to patients' satisfaction with the model of physician-led follow-up. DESIGN: Systematic review. METHOD: Three databases were searched, and 29 RCT were initially screened. Finally, 13 articles were critically appraised. Searches included articles between 2005-2013. The quality of appraisal assessment was inspired by the GRADE system. RESULTS: The results show that there are many different instruments used when evaluating nurse-led follow-up, which makes it difficult to compare the studies. Several of the studies used QoL as an outcome measure; this is a broad concept that includes several aspects ranging from social role and psychosocial issues to symptoms and therefore difficult to use as an outcome measure. Only two of the studies made any cost-effective analyses, and the results are hard to interpret. CONCLUSIONS: Nurse-led follow-up can potentially result in better continuity of care and the availability of more time to provide psychosocial support and address patients' information needs. However, more well-conducted research is needed before equivalence to physician-led follow-up can be assessed in terms of survival, recurrence, patient well-being and cost-effectiveness. RELEVANCE TO CLINICAL PRACTICE: Results from well-conducted evaluation studies of nurse-led services based on theory are needed so that relevant interventions can be implemented in clinical practice. There is a need to in future studies include cost-effectiveness analyses to compare nurse-led services with other types of follow-up.

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.

Stressors, stress response, and cancer recurrence: a systematic review.

BACKGROUND: Cancer survivors assume that stress plays an important role in cancer recurrence. However, the role of stress in the etiology of cancer recurrence remains unclear. OBJECTIVE: A systematic review examining the causal role of exposure to stressors and/or stress response and cancer recurrence was conducted. METHODS: The authors screened the scientific literature published from December 1979 through April 2012. Prospective studies and randomized control trials that examined the link between exposure to stressors and/or stress response and cancer recurrence were included in the review. RESULTS: Fifteen studies examined exposures to stressors (life event questionnaires) and/or multiple indices of the stress response (mood, anxiety, depression, biological, and immune measures). The relationships between stressors and/or stress response and recurrence were observed as no relationship (80%), positive relationship (33%), and inverse relationship (27%). One of 3 randomized control trials reported a positive relationship between stress reduction and reduced risk of recurrence. CONCLUSIONS: The scientific literature to date indicates no clear evidence for a causal relationship between stress (measured as stressor exposure and/or stress response) and cancer recurrence. Although additional high-quality research is needed to provide a more definitive answer, the evidence to date does not support this hypothesis. IMPLICATIONS FOR PRACTICE: Although at present, there is no evidence indicating a causal relationship between stress and cancer recurrence, attending to the reduction in a cancer survivor's stress response can improve emotional well-being and quality of life.

Young couples' experiences of breast cancer during hormone therapy: an interpretative phenomenological dyadic analysis.

BACKGROUND: Young women are confronted with the same consequences of cancer as older women are. In addition, they face problems specifically related to their age, such as their children's education and their family responsibilities, marital relationships, and career issues. OBJECTIVE: The objective was to identify the functioning profiles of young couples confronted with hormone therapy. METHODS: This study was both qualitative and dyadic. Interviews with 11 couples revealed 5 themes. RESULTS: Initially, the partners reported increased intimacy and mutual support; however, during hormone therapy, a divergence developed between the patients and their partners. The partners wished for the couple to resume a normal life. The patients' loved ones, also helpful in the beginning, were tempted to promote this resumption of normalcy, with the risk that the patients' suffering would no longer be acknowledged. The risk of cancer recurrence appeared to immobilize the patients, who were unable to adopt a long-term perspective. Finally, the experience of the disease led the participants to reorganize their priorities and promoted self-centering. CONCLUSIONS: Breast cancer affects both the patient and her loved ones. Future research should focus on qualitative extensions to other stages of cancer treatment and quantitative studies to measure the phenomena revealed in the current work. IMPLICATIONS FOR PRACTICE: Cancer and its treatment have impacts on the patient and her marriage; therefore, the focus for the clinical care should be on the couple rather than just the patient. Additionally, our findings suggest new areas of psychological dyadic counseling for cancer patients and their partners.

Physical activity and the risk of breast cancer recurrence: a literature review.

PURPOSE/OBJECTIVES: To examine the association between physical activity and breast cancer mortality and recurrence, and to provide an overview of factors related to physical activity behavior in women with breast cancer. DATA SOURCES: An extensive review of the epidemiologic literature on the effect of physical activity on breast cancer recurrence and mortality was conducted using PubMed up to December 2010, involving the following key words: physical activity, exercise, breast cancer, breast cancer recurrence, and breast cancer mortality. DATA SYNTHESIS: For breast cancer recurrence and breast cancer-related mortality, studies were included if physical activity served as the independent variable and a measure of association was reported. To examine determinants of physical activity, studies were included if a hypothesized factor served as the independent variable and a measure of association was reported. CONCLUSIONS: Of the six studies that examined the influence of physical activity on breast cancer mortality, four (67%) reported a protective effect (i.e., inverse association), two examined the influence of physical activity on breast cancer recurrence and reported a nonsignificant risk reduction. Few studies have examined factors that influence physical activity behavior in women with breast cancer, and findings suggest that psychosocial factors play an important role in influencing the activity patterns of breast cancer survivors. Future longitudinal studies are needed to confirm those findings. IMPLICATIONS FOR NURSING: To prevent breast cancer recurrence and breast cancer-related mortality, nurses should encourage breast cancer survivors to engage in regular exercise.

Predicting fear of breast cancer recurrence and self-efficacy in survivors by age at diagnosis.

PURPOSE/OBJECTIVES: To determine the effect that age at diagnosis has on fear of breast cancer recurrence and to identify the predictors of fear of recurrence using self-efficacy as a mediator. DESIGN: Cross-sectional survey. SETTING: Two university cancer centers and one cooperative group in the midwestern United States. SAMPLE: 1,128 long-term survivors. METHODS: Survivors were eligible if they were aged 18-45 years (younger group) or 55-70 years (older group) at cancer diagnosis, had received chemotherapy, and were three to eight years postdiagnosis. Fear of recurrence was compared between younger and older groups. Multiple regression analyses were used to test variables' prediction of fear of recurrence and breast cancer survivor self-efficacy, as well as breast cancer survivor self-efficacy mediation effects. MAIN RESEARCH VARIABLES: Fear of recurrence, breast cancer survivor self-efficacy, and age at diagnosis. FINDINGS: Survivors diagnosed at a younger age had significantly higher fear of recurrence, as well as health, role, womanhood, death, and parenting worries. Perceived risk of recurrence, trait anxiety, and breast cancer reminders explained significant variance in fear of recurrence and breast cancer survivor self-efficacy. Breast cancer survivor self-efficacy partially mediated the effects of variables on fear of recurrence. CONCLUSIONS: The findings suggest that breast cancer survivor self-efficacy may have a protective effect for survivors who are younger at diagnosis and have higher perceived risk of recurrence, higher trait anxiety, and more breast cancer reminders. Oncology nurses already use the skills required to support self-efficacy. Additional research is needed to define and test breast cancer survivor self-efficacy interventions. IMPLICATIONS FOR NURSING: Oncology nurses are in a key role to assess fear of recurrence and provide self-efficacy interventions to reduce it in breast cancer survivors. Strategies to efficiently address fear of recurrence to reduce psychological distress in survivorship follow-up care are warranted.

[Malnutrition and weight loss - nurse assessment of nutritional status and counselling: experiences of patients with newly diagnosed or relapsed cancer]. / Malnutrition und Gewichtsverlust - Erfassen des Ernährungsstatus und Beratung durch Pflegende: Das Erleben von Patienten mit einer neu diagnostizierten oder rezidivierten Tumorerkrankung.

Due to the anorexia-cachexia syndrome, cancer patients are already suffering from nutritional problems and weight loss by the time they receive their diagnosis and start chemotherapy. In the oncology outpatient clinic of a Swiss university hospital, patients currently undergo a nutritional assessment and receive individual counselling at the beginning of cancer treatment. This qualitative study explored cancer patients' experiences with weight loss and nutritional problems as well as how they experienced the assessment and the consecutive counselling by nurses. Interviews were conducted with 12 patients and qualitative content analysis was used for data analysis. Results showed that patients barely registered the weight loss and did not interpret it as an early warning signal. Nevertheless, they attempted to improve their nutritional habits soon after diagnosis, prior to receiving any counselling. The patients did not experience the assessment as troublesome. They appreciated the nurses' advice and implemented the suggestions they found appropriate. This study highlights the importance of patient education regarding weight loss and nutritional problems early in the course of an illness. Patients may not be aware of nutritional problems at this early stage and may lack the necessary specialised knowledge. Assessment and counselling provided by nurses offer targeted measures for prevention of malnutrition and weight loss.