Search

Guided by the Intersectionality Framework, we examined the differential in breast cancer care experience across population subgroups in England. Secondary data analysis using the 2017/2018 National Cancer Patient Experience Surveys. We used disaggregated descriptive statistics (mean, standard errors, 95% confidence interval) to analyse 26,030 responses from female breast cancer patients to a question relating to overall care experience categorised by age, ethnicity, and sexual orientation in their intersection with social position. We then used logistic regression to investigate the odds (Odds Ratio (OR), 95% confidence intervals) of reporting positive care experience adjusting for patient, clinical, and Trust level factors. Poorer care experience was predominantly reported by the most deprived younger and minoritised ethnic groups. Statistically significant findings were observed in adjusted multivariable analyses. Compared to patients aged 65–74 years, younger respondents were less likely to rate their care favourably (16–34 years old OR adj. = 0.55 (0.36–0.84). Compared to White British, Asian (OR adj. = 0.51 (0.39–0.66)) and Black African women (OR adj. = 0.53 (0.33–0.88)) were less likely to rate their care favourably. The least affluent respondents were less likely to rate their care favourably (OR adj. = 0.79 (0.64–0.97)). There is evidence of inequity in overall cancer care experience among female breast cancer patients in England, particularly among women living at the specific intersection of age, ethnicity, and socioeconomic position. Future research is necessary to understand the mechanisms underlying breast cancer inequities. Policymakers, commissioners, and providers should consider the existence of multiple forms of marginalisation to inform improvement initiatives targeting patients at higher risk of vulnerability. • Intersectionality is a useful tool to build more precise maps of cancer inequities. • Multifaceted forms of marginalisation exacerbate cancer inequities for minoritised patients. • Intersectional inequities in care experience exist among women with breast cancer. • Intersectional-informed policies and services are key to tackle cancer inequities. [ABSTRACT FROM AUTHOR]

To show how people with cancer, including those with advanced breast cancer, engage with information and self-management and how cancer nurses can support patients to manage important aspects of care. Epstein and Street's patient-centered communication in cancer care (PCC) model provides a useful framework. The model incorporates six domains representing core mediating functions of patient-centered communication (Fostering healing relationships, Exchanging information, Responding to emotions, Managing uncertainty, Making decisions, and Enabling self-management) and additional moderating factors for PCC and health outcomes. Data sources include peer-reviewed articles sourced from electronic databases. Common complex interrelated reasons for poor engagement include fear, denial, fatalism, bereavement, advanced disease, and poor clinician–patient relationships. This can have serious implications for physical and emotional outcomes. Facilitators include open, trusting relationships between patients and nurses, timing of information, focusing on patients' agendas, and understanding emotional concerns, beliefs, and motivations. Supporting patients and carers to work together, through evidence-based interventions and tailoring approaches, for example to older people, are important. Patient information and engagement are important aspects of cancer nursing. Interventions are largely based on behavior change theory, but new translational research is needed to demonstrate effectiveness. Nurses need education on how to develop skills to effectively manage this complex process to effectively engage and educate patients. [ABSTRACT FROM AUTHOR]

Primary care nurses can contribute to cancer early diagnosis. The objective of this systematic review was to identify, appraise and synthesise evidence on primary care nurses' contribution towards cancer early diagnosis in developed countries. The following databases were searched in September 2017: MEDLINE, PsychINFO, CINAHL, SCOPUS, and EMBASE. Data were extracted on nurses': knowledge of cancer; frequency of 'cancer early diagnosis-related discussions' with patients; and perceived factors influencing these discussions. Studies were appraised using the Mixed Methods Appraisal Tool. Twenty-one studies were included from: United States, United Kingdom, Ireland, Spain, Turkey, Australia, Brazil and Middle East. Studies were mostly of low quality (one did not meet any appraisal criteria, 15 met one, four met two, and one met three). Nurses' knowledge of cancer, and their frequency of 'cancer early diagnosis-related discussions', varied across countries. This may be due to measurement bias or nurses' divergent roles across healthcare systems. Commonly perceived barriers to having screening discussions included: lack of time, insufficient knowledge and communication skills, and believing that patients react negatively to this topic being raised. Findings suggest a need for nurses to be adequately informed about, and have the confidence and skills to discuss, the topic of cancer early diagnosis. Further high-quality research is required to understand international variation in primary care nurses' contribution to this field, and to develop and evaluate optimal methods for preparing them for, and supporting them in, this. • Nurses' knowledge of cancer, and frequency of cancer–related discussions, was found to vary across the counties examined. • Barriers to having screening discussions include: lack of time and knowledge, and perceiving patients to react negatively. • Nurses have reported difficulty in providing screening information in lay-terms, and identifying discussion openings. [ABSTRACT FROM AUTHOR]

Purpose The purpose of the eSMART (Electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology) study is to evaluate the use of mobile phone technology to manage chemotherapy-related toxicities (CRTs) in people with breast cancer (BC), colorectal cancer (CRC), Hodgkin's lymphoma (HL), and non-Hodgkin lymphoma (NHL)) across multiple European sites. One key objective was to review the published and grey literature on assessment and management of CRTs among patients receiving primary chemotherapy for BC, CRC, HL, and NHL to ensure that ASyMS remained evidence-based and reflected current and local practice. Methods Three electronic databases were searched for English papers, with abstracts available from 01/01/2004-05/04/2014. For the grey literature, relevant clinical practice guidelines (CPGs)/evidence-based resources (EBRs) from the main international cancer organisations were reviewed as were symptom management (SM) protocols from the sites. Results After full-text screening, 27 publications were included. The majority (n = 14) addressed fatigue and focused on BC patients. Relevant CPGs/EBRs were found for fatigue (n = 4), nausea/vomiting (n = 5), mucositis (n = 4), peripheral neuropathy (n = 3), diarrhoea (n = 2), constipation (n = 2), febrile neutropenia/infection (n = 7), palmar plantar erythrodysesthesia (PPE) (n = 1), and pain (n = 4). SM protocols were provided by >40% of the clinical sites. Conclusions A need exists for empirical research on SM for PPE, diarrhoea, and constipation. Research is needed on the efficacy of self-care strategies in patients with BC, CRC, HL, and NHL. In general, consistency exists across CPGs/EBRs and local guidelines on the assessment and management of common CRTs. [ABSTRACT FROM AUTHOR]

Purpose The aim of this study was to identify factors influencing patient perception of success and benefit with self-management of breast cancer-related lymphoedema (BCRL) and explore how patients decide whether their swollen limb has improved or deteriorated. Methods This qualitative study used a Grounded Theory approach. Twenty-one women in the BCRL self-management phase participated in one in-depth interview exploring their experience and perspective on self-managing their BCRL. Findings Seven enablers and blocks to self-management were identified: routine, recognising benefit of self-management and consequences of non-treatment, owning treatment, knowledge and understanding, problem-solving, time required for treatment and aesthetics of hosiery. Women determined treatment outcome by monitoring size, appearance, texture and internal sensations within the affected arm. Conclusions Women who participated in this study showed varying degrees of acceptance and adjustment to life with lymphoedema. This appears to directly impact their ability to self-manage lymphoedema. Lymphoedema practitioners and oncology nurses have a valuable role providing knowledge and support to patients transitioning to independent self-care. A better understanding of factors facilitating patients to become experts in their condition may improve longer term outcomes and reduce cost pressures on lymphoedema services. [ABSTRACT FROM AUTHOR]

Objective Fatigue is a common cancer-related symptom and exacerbated by chemotherapy. Psychological interventions for fatigue show promise. One, Beating Fatigue, was adapted for delivery by telephone and evaluated in an exploratory trial. Methods Eight patients and 12 professionals contributed to focus groups that guided adaptation of the intervention. The intervention, modified for delivery by telephone using motivational interviewing, was tested in an exploratory trial. Forty-four patients were recruited to the trial and randomized between the intervention (n = 23) and control ( n = 21). Outcome data were collected on fatigue intensity, fatigue distress, fatigue self-efficacy, anxiety and depression at baseline and following completion of chemotherapy. These data were augmented by interviews conducted to inform understanding of the intervention's mechanism, feasibility and acceptability. Results The intervention was both feasible and acceptable to patients and most reduced fatigue distress (Effect Size ES = 0.62). It also reduced fatigue intensity (ES = 0.18), fatigue self-efficacy (ES = −0.34), and anxiety (ES = 0.31). It did not reduce depression. Conclusion These preliminary data are encouraging and support the delivery of interventions for cancer-related fatigue by telephone. Motivational interviewing appeared key to the intervention's success. A larger definitive RCT is indicated. Practice Implications: Opportunities should be sought to deliver psychologically-based interventions for fatigue by telephone. [ABSTRACT FROM AUTHOR]

Abstract: Background: Prostate cancer is prevalent worldwide. In England, men living with this malignancy often report unmet psychological, informational, urological and sexual needs. Their experience of care is correspondingly lower than that of other patient groups with cancer. To address this, prostate cancer clinical nurse specialist posts were established across England and Scotland. Their intent was to support men with this form of cancer, enhance symptom management and improve quality of service provision. Objectives: The research sought to investigate prostate cancer clinical nurse specialists’ roles, determine whom they targeted services at, and determine their work practices and perceived contribution. Design: A mixed method multi-site exploratory-descriptive design was employed. Settings: Data were collected across four acute NHS Trusts—one in the South of England, one in the Midlands, one in Northern England and one in Scotland, respectively. Participants: Participants included 4 prostate cancer clinical nurse specialists, 19 of their clinical colleagues and 40 men they provided care to. Methods: Data were collected through nurse specialists’ completion of a Diary and Contact Sheets. Interviews were conducted concurrently with the nurses, stakeholders they worked alongside and patients on their caseload. Data were collected between November 2004 and January 2006. Results: There was great variation in the qualifications and experience of nurse specialists and in the services they provided. Services ranged from generic support and information provided across the disease trajectory to provision of services to meet specific care needs, e.g. providing nurse-led clinics for erectile dysfunction. Patients and members of the multidisciplinary team welcomed the introduction of nurse specialists but were aware they could become over burdened through their rapidly growing caseloads. Conclusions: Variability in services provided by the prostate cancer nurse specialists arose from differences in local demand for nursing services and the skills and experiences of those appointed. Such variability – whilst understandable – has implications for access and equity across patient groups. Further, it can compromise efforts to define clinical nurse specialists’ contribution to care, can impede others’ expectation of their role, and render their outcomes difficult to evaluate. [Copyright &y& Elsevier]

Objective: Patients increasingly use the internet to source health information. Voluntary organisations offering information and support often provide such information on their websites. However, the internet is unregulated and information can be of poor quality. The aim of this study was to evaluate the quality of breast cancer information provided by 10 Great Britain (GB) voluntary organisations’ websites. Methods: Quality of websites was evaluated using an investigator-designed appraisal tool based on European Commission (EC) quality criteria for health-related websites. Completeness and transparency of breast cancer information, and usability of websites, were appraised. Results: Typically, breast cancer-specific organisations provided the highest quality information, particularly in terms of its completeness. However, great variability in quality was identified. Areas of weakness related to transparency of information, in particular disclosure of authorship, and its apparent currency. Conclusion: Voluntary organisations providing web-based breast cancer information have progress to make to ensure information provided is complete and transparent, and websites are user-friendly. Unfortunately, informed decision-making will not be optimised if patients cannot access quality information. Practice implications: Voluntary organisations should regularly review the quality of information on their websites. Grading of websites allows healthcare professionals to identify and signpost patients to trustworthy, up-to-date websites. Thus, ensuring patients receive high quality information. [Copyright &y& Elsevier]

Summary: There is little research exploring nurses’ experiences of, and attitudes towards, the chemotherapy administration process. There is also limited work investigating practitioners’ educational preparation for this aspect of cancer nursing. The aim of this study was to describe nurses’ experiences, attitudes and educational preparation for the chemotherapy administration process. A postal survey was conducted across 26 London hospitals providing cancer services. A survey questionnaire was sent to all 526 nurses who administered chemotherapy in these hospitals, of whom 257 replied (response rate 49%). Nearly all nurses (n=244, 95%) reported being frightened, scared and anxious when initially working with chemotherapy. Of these 221(86%) stated they became more confident with experience, when supported by knowledgeable role models and following chemotherapy education. Over 80% (n=206) of the sample had received some form of education, whilst 241 nurses (94%) thought they could benefit from more. Nurses reported they were often or always worried about extravasation (n=113, 44%), anaphylactic reactions (n=95, 37%), and other nurses’ education and knowledge deficits (n=118, 46%). Overall, nurses’ attitudes towards chemotherapy were neither negative nor positive. Findings highlight the value of formal educational preparation in chemotherapy prior to undertaking this aspect of nursing. Positive role models for novice practitioners would appear important and role models themselves require continued professional development. Wide variations in educational preparation and practice exist and a co-ordinated education and training strategy for chemotherapy practice is warranted to underpin safe and effective practice in this area. [Copyright &y& Elsevier]

Abstract: This study evaluated a supportive intervention for fatigue in patients undergoing chemotherapy. One hundred three chemotherapy-naïve patients were recruited, stratified by treatment regimen, and randomly allocated to intervention or usual care. The intervention was conducted over three months. Recipients were provided with an investigator-designed information pack and Fatigue Diary that they completed during the week following each treatment. Additionally, support nurses visited them monthly at home. They assessed fatigue, provided psychological support, and coached participants in self-care. The intervention group reported significantly less fatigue (P <0.05), lower associated distress (P <0.05), and less impact of fatigue on valued pastimes (P <0.05) than the control group. Further, they reported significantly less anxiety (P <0.05) and depression (P <0.05) and displayed more adaptive coping (P <0.05). The intervention enabled patients to adapt to living with fatigue and contributed to their psychological/emotional well-being and ability to cope with their illness and treatment. [Copyright &y& Elsevier]

Due to delivery of chemotherapy being mostly in ambulatory care settings, support of people with cancer relies heavily on caregivers (e.g. relatives). Whilst cancer caregiver research has been flourishing, there has been little focus on the specific experiences of caregivers of older people (>70yrs) with cancer, and little considerations of cultural influences on their experiences. This study explored caregiver experiences and outcomes in the geriatric oncology context in Switzerland. Sequential mixed-methods design, comprising a) cross-sectional survey (n = 86/RR52%; age range 37–85) and b) interviews (n = 19) to explore experiences of caregivers of older people (mean age in yrs 74.6 (sd 4.3) with cancer, and factors related to caregivers' psychological morbidity and health related quality of life (HrQoL). Caregivers reported a median of three moderate/high unmet needs (range 0–41) and 44% reported clinically significant psychological morbidity. Demographics (caregiver age, gender, and marital status), caregiving tasks (physical, psycho-emotional, social and/or treatment related care), unmet needs and caregiver burden collectively explained between 20 and 57% of variance in caregiver psychological morbidity and HRQoL. Two main themes emerged from interviews: "Being a caregiver and doing caregiving" and "Living through the situation." These indicated that caregiver roles are multiple and fluid, and identified responsibilities not previously reported outside of palliative care settings, such as thinking about and planning for death and dying. Caregiving for an older person with cancer can have detrimental impacts on caregivers' wellbeing and quality of life. Consideration needs to be given to the particular needs of caregivers in geriatric oncology settings. Their support needs appear different to those of their counterparts caring for younger people with cancer, notably related to spiritual needs; this may in part relate to possible differences arising from caregivers themselves being older. What is already known about the topic? • The number of older people with cancer treated with chemotherapy in the ambulatory care setting is increasing. • Cancer caregivers have unmet needs and caregiver burden can lead to detrimental health outcomes for caregivers. What this paper adds: • Caregivers take on different roles and distinct caregiving activities, e.g. thinking about and preparing for death and dying. • Spouses of older people with cancer have higher spiritual wellbeing than filial caregivers. [ABSTRACT FROM AUTHOR]

Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Longitudinal digitally-recorded qualitative semi-structured interviews with family carers at the beginning, mid-point, and end of treatment. Twenty-five family members (17 women, 8 men), mean age 53, were interviewed. Fifteen participants were supporting a relative having chemotherapy with curative intent, and 10 a patient receiving palliative chemotherapy. They were recruited from two UK locations: a regional cancer centre in Southampton and a comprehensive cancer centre in London. Sixty-three interviews were conducted in total, and the data were analysed using Framework Analysis. Three themes were generated from the data: Changing lives, Changing roles ; Confidence in caring , and Managing uncertainty. These captured family carers' evolving needs and sense of confidence in caregiving during chemotherapy. Carers reported considerable anxiety at the outset of treatment which persisted throughout. Anxiety was underpinned by fears of disease recurrence or progression and concerns about treatment outcomes. This study presents original fine-grained work that captures the changes over time in family carers' experiences of chemotherapy and their adaptation to caregiving. It provides fundamental evidence of the challenges that cancer carers face during patients' treatment; evidence that can be used as a basis for carer assessment and to build much-needed carer interventions. Oncology nurses should assess carers': ability to care; needs for information and support to prepare them for this; wellbeing over time; and, any support they may require to prevent them from becoming overburdened. • Family members' confidence in caregiving can grow as treatment progresses as long as they can access appropriate help when needed. • For carers of people having curative chemotherapy, anxiety and stress appear to accumulate over the treatment journey. • Carers' experiences and needs should be assessed at multiple time points to enable healthcare professionals to respond effectively to their support needs. [ABSTRACT FROM AUTHOR]

Predictive risk models are advocated in psychosocial oncology practice to provide timely and appropriate support to those likely to experience the emotional and psychological consequences of cancer and its treatments. New digital technologies mean that large scale and routine data collection are becoming part of everyday clinical practice. Using these data to try to identify those at greatest risk for late psychosocial effects of cancer is an attractive proposition in a climate of unmet need and limited resource. In this paper, we present a framework to support the development of high-quality predictive risk models in psychosocial and supportive oncology. The aim is to provide awareness and increase accessibility of best practice literature to support researchers in psychosocial and supportive care to undertake a structured evidence-based approach. Statistical prediction risk model publications. In statistical modeling and data science different approaches are needed if the goal is to predict rather than explain. The deployment of a poorly developed and tested predictive risk model has the potential to do great harm. Recommendations for best practice to develop predictive risk models have been developed but there appears to be little application within psychosocial and supportive oncology care. Use of best practice evidence will ensure the development and validation of predictive models that are robust as these are currently lacking. These models have the potential to enhance supportive oncology care through harnessing routine digital collection of patient-reported outcomes and the targeting of interventions according to risk characteristics. [ABSTRACT FROM AUTHOR]

Context: Risk profiling of oncology patients based on their symptom experience assists clinicians to provide more personalized symptom management interventions. Recent findings suggest that oncology patients with distinct symptom profiles can be identified using a variety of analytic methods.Objectives: The objective of this study was to evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis and K-modes analysis.Methods: Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale, that 1329 patients completed prior to their next dose of chemotherapy (CTX), Cohen's kappa coefficient was used to evaluate for concordance between the two analytic methods. For both latent class analysis and K-modes, differences among the subgroups in demographic, clinical, and symptom characteristics, as well as quality of life outcomes were determined using parametric and nonparametric statistics.Results: Using both analytic methods, four subgroups of patients with distinct symptom profiles were identified (i.e., all low, moderate physical and lower psychological, moderate physical and higher Psychological, and all high). The percent agreement between the two methods was 75.32%, which suggests a moderate level of agreement. In both analyses, patients in the all high group were significantly younger and had a higher comorbidity profile, worse Memorial Symptom Assessment Scale subscale scores, and poorer QOL outcomes.Conclusion: Both analytic methods can be used to identify subgroups of oncology patients with distinct symptom profiles. Additional research is needed to determine which analytic methods and which dimension of the symptom experience provide the most sensitive and specific risk profiles. [ABSTRACT FROM AUTHOR]