Professor Emma Ream

Objectives: 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: Data sources include peer-reviewed articles sourced from electronic databases. Conclusion: 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. Implications for Nursing Practice: 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.

Objective: Black women in the United Kingdom are more likely than White women to be diagnosed with advanced breast cancer and have lower survival rates. We consulted women of Black Caribbean and Black African descent in the United Kingdom on how the Promoting Early Presentation (PEP) booklet and intervention could be adapted for Black women to promote early presentation with breast cancer symptoms. Methods: Focus groups with 22 women of Black African and Black Caribbean descent, of whom five had been treated for breast cancer. The participants were recruited from a large UK breast cancer charity and community settings. Data were analysed using Framework Analysis. Results: Four themes summarised the participants' views on how the booklet and intervention could be adapted: Justify the focus on Black women, Black people do not talk about cancer, Make interventions inclusive and engaging, and Engage Black communities to deliver interventions. Conclusion: Breast cancer behaviour change interventions need to be more inclusive, illustrate how breast cancer symptoms manifest on black skin, and emphasise that breast cancer is curable to increase awareness and reduce cancer fear. Researchers should involve Black communities in the design and delivery of interventions to address appropriately cultural barriers to early presentation.

Objective: To evaluate effects of remote monitoring of adjuvant chemotherapy related side effects via the Advanced Symptom Management System (ASyMS) on symptom burden, quality of life, supportive care needs, anxiety, self-efficacy, and work limitations. Design: Multicentre, repeated measures, parallel group, evaluator masked, stratified randomised controlled trial. Setting: Twelve cancer centres in Austria, Greece, Norway, Republic of Ireland, and UK. Participants: 829 patients with non-metastatic breast cancer, colorectal cancer, Hodgkin’s disease, or non-Hodgkin’s lymphoma receiving first line adjuvant chemotherapy or chemotherapy for the first time in five years. Intervention: Patients were randomised to ASyMS (intervention; n=415) or standard care (control; n=414) over six cycles of chemotherapy. Main outcome measures: The primary outcome was symptom burden (Memorial Symptom Assessment Scale; MSAS). Secondary outcomes were health related quality of life (Functional Assessment of Cancer Therapy—General; FACT-G), Supportive Care Needs Survey Short-Form (SCNS-SF34), State-Trait Anxiety Inventory—Revised (STAI-R), Communication and Attitudinal Self-Efficacy scale for cancer (CASE-Cancer), and work limitations questionnaire (WLQ). Results: For the intervention group, symptom burden remained at pre-chemotherapy treatment levels, whereas controls reported an increase from cycle 1 onwards (least squares absolute mean difference −0.15, 95% confidence interval −0.19 to −0.12; P

Purpose: Capture change in family members' experiences as they look after patients during chemotherapy, and understand variability in their needs for support. Method: 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. Results: 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. Conclusions: 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.

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.

IntroductionPersistent inequalities in cancer care and cancer outcomes exist within and between countries. However, the evidence pertaining to the root causes driving cancer inequalities is mixed. This may be explained by the inadequate attention paid to experiences of patients with cancer living at the intersection of multiple social categories (eg, social class, ethnicity). This is supported by the intersectionality framework. This framework offers an alternative lens through which to analyse and understand how these interlocking systems of oppression uniquely shape the experiences of patients with cancer and drive inequalities. In this protocol, we outline a scoping review that will systematically map what is known about the relationship between intersectionality and inequalities in care experience and cancer outcomes of patients with cancer; and to determine how the intersectionality framework has been applied in studies across the cancer care pathway and across countries.Methods and analysisThis study will be guided by Arksey and O’Malley’s, and Levac et al’s frameworks for scoping reviews. We will identify and map the evidence on cancer inequalities and intersectionality from 1989 to present date. Electronic databases (EMBASE, PsychINFO, CINAHL, Medline, Web of Science, ProQuest) and a systematic search strategy using a combination of keywords and Boolean operators AND/OR will be used to identify relevant studies. Screening of eligible papers and data extraction will be conducted by two independent reviewers, and disagreements resolved by discussion with the research team. We will use an iterative process to data charting using a piloted form. Findings will be collated into a narrative report.Ethics and disseminationEthical approval is not required since data used are from publicly available secondary sources. Findings will be disseminated through peer-reviewed journals, conferences and stakeholder meetings. Further, findings will inform the next phases of a multistage research project aimed at understanding inequalities among patients with breast cancer.

Background People with cancer experience a variety of symptoms as a result of their disease and the therapies involved in its management. Inadequate symptom management has implications for patient outcomes including functioning, psychological well-being and quality of life (QoL). Attempts to reduce the incidence and severity of cancer symptoms have involved the development and testing of psycho-educational interventions to enhance patients' symptom self-management. With the trend for care to be provided nearer patients' homes, telephone-delivered psycho-educational interventions have evolved to provide support for the management of a range of cancer symptoms. Early indications suggest that these can reduce symptom severity and distress through enhanced symptom self-management. Objectives To assess the effectiveness of telephone-delivered interventions for reducing symptoms associated with cancer and its treatment. To determine which symptoms are most responsive to telephone interventions. To determine whether certain configurations (active ingredients, dosage) of telephone interventions mediate observed cancer symptom outcome effects. Search methods We searched the following databases: the Cochrane Central Register of Controlled Trials (CENTRAL; 2019, Issue 1) in the Cochrane Library; MEDLINE via OVID (1946 to January 2019); Embase via OVID (1980 to January 2019); CINAHL via Athens (1982 to January 2019); British Nursing Index (1984 to January 2019); and PsychINFO (1989 to January 2019). Additionally, we searched conference proceedings to identify published abstracts, and SIGLE and trial registers for unpublished studies. We also searched the reference lists of all included articles for additional relevant studies. Finally, we hand searched the following journals: Cancer, Journal of Clinical Oncology, Psycho-oncology, Cancer Practice, Cancer Nursing, Oncology Nursing Forum, Journal of Pain and Symptom Management, Palliative Medicine. Search was restricted to publications published in English. Selection criteria We included randomised control trials (RCTs) and quasi-RCTs which compared one or more telephone interventions with each other, or with other types of interventions (e.g. a face-to-face intervention) and/or usual care, with the stated aim of addressing any physical or psychological symptoms of cancer and its treatment, which recruited adult (over 18 years) men and women with a clinical diagnosis of cancer, regardless of tumour type, stage of cancer, type of treatment and time of recruitment (e.g. pre, during or post treatment). Data collection and analysis Two review authors independently selected articles, extracted data, and appraised methodological quality and risk of bias. Disagreements were resolved through discussion, involving the entire review team where necessary. Risk of bias was assessed using the Cochrane's risk of bias tool. We had planned to conduct meta-analyses using random effects models for symptoms where there were sufficient data to enable this. Heterogeneity between study outcomes was planned to be determined through visual inspection of forest plots and calculation of the I2 statistic. Where possible, outcomes are reported as standardised mean differences (SMDs) with 95% confidence intervals (CIs) and a descriptive synthesis of study findings is presented. Findings are reported on according to symptom addressed and intervention type (e.g. telephone only or telephone combined with other elements). As many studies had small samples, and baseline scores for study outcomes often varied for intervention and control groups, change scores and associated standard deviations were used. Main results Thirty-two studies were eligible for the review; most had moderate risk of bias, mostly related to blinding. Collectively they recruited 6250 people. Interventions were studied in people with a variety of cancer types and across the disease trajectory although many participants had breast cancer, early stage cancers and/or were starting treatment. Symptoms measured were anxiety, depression, emotional distress, uncertainty, fatigue, pain, sexuality-related symptoms and general symptom intensity and/or distress. Interventions were primarily (n = 24) delivered by nurses, most (n=16) had a background in oncology, research or psychiatry. Ten were delivered solely by telephone; the rest combined telephone with additional elements (face-to-face consultation, and digital/online/printed resources). Number of calls delivered ranged from 1 to 18; most provided 3 to 4 calls. Twenty‐one studies provided evidence on effectiveness of telephone‐delivered interventions and the majority appeared to reduce symptoms of depression compared to control. Nine studies contributed quantitative change scores (CSs) and associated standard deviation results (or these could be calculated). Likewise, many telephone interventions appeared effective when compared to control in reducing anxiety (16 studies; 5 contributed quantitative CS results); fatigue (9 studies; 6 contributed to quantitative CS results); and emotional distress (7 studies; 5 contributed quantitative CS results). Due to significant clinical heterogeneity with regards to interventions introduced, study participants recruited, and outcomes measured, meta‐analysis was not conducted. For other symptoms (uncertainty, pain, sexuality-related symptoms, dyspnoea and general symptom experience) there was limited evidence; meta-analysis was similarly not possible and the results from individual studies were largely conflicting making conclusions about their management through telephone-delivered intervention hard to draw. There was considerable heterogeneity across all trials for all outcomes. Overall, the certainty of the evidence was low for all outcomes in the review due to uncertainty over estimates. Outcomes were all downgraded due to concerns about overall risk of bias profiles being frequently unclear and due to inconsistencies in results and general heterogeneity. Unsubstantiated evidence suggests that telephone interventions in some capacity may have a place in symptom management for adults with cancer. However, in the absence of reliable and homogeneous evidence, caution is needed in interpreting the narrative synthesis. Further, there were no clear patterns across studies regarding which forms of interventions (telephone alone versus augmented with other elements) are most effective. It is impossible to conclude with any certainty which forms of telephone intervention are most effective in managing the range of cancer‐related symptoms that people with cancer experience. Authors' conclusions Telephone interventions provide a convenient way of supporting self-management of cancer-related symptoms in adults with cancer. They are becoming more important with the shift of care closer to patients' homes, need for resource/cost containment and potential for voluntary-sector providers to deliver healthcare interventions. There is some evidence supporting use of telephone-delivered interventions for symptom management in adults with cancer; most evidence relates to four commonly experienced symptoms - depression, anxiety, emotional distress and fatigue. Some telephone-delivered interventions were augmented by combining them with face-to-face meetings and provision of printed or digital materials. The review was unable to determine whether telephone alone or in combination with other elements provides optimal reduction in symptoms; it appears most likely that this will vary by symptom. It is noteworthy that, despite the potential for telephone interventions to deliver cost savings, none of the studies reviewed included any form of health economic evaluation. Further robust and adequately reported trials are needed across all cancer-related symptoms as the certainty of evidence generated in studies within this review was largely low to moderate, and reporting was of variable quality. Efforts are needed by researchers to reduce variability between studies in future. Studies in the review were characterised by both clinical and methodological diversity; the level of diversity hindered comparison across studies. At the very least, efforts should be made to standardise outcome measures. Finally, studies were compromised by having small samples, inadequate concealment of group allocation, lack of observer blinding and short length of follow up. Consequently, conclusions relating to symptoms most amenable to management by telephone-delivered intervention are tentative.

Objectives: There is a global increase in the number of women diagnosed with cancer during their pregnancy and a nascent evidence base to guide their supportive care. The purposes of this study were to (1) map research on the psychosocial issues affecting women and their partners on diagnosis and treatment for cancer during pregnancy; (2) determine available supportive care or educational interventions; and (3) identify knowledge gaps for future research and development. Design: Scoping review. Search strategy: Six databases were searched (Scopus, CINAHL, PsycINFO, Medline, Intermid, Maternal and Infant Health) to retrieve primary research (January 1995 to November 2021) investigating women and/or their partner’s decision-making and their psychosocial outcomes during and after pregnancy. Data extraction and synthesis: Sociodemographic, gestational and disease characteristics of participants and psychosocial issues identified were extracted. Leventhal’s self-regulatory model of illness provided a framework for mapping study findings enabling evidence synthesis and gap analysis. Results: Twelve studies were included, conducted in eight countries in six continents. Most women (70% of 217) were diagnosed with breast cancer during pregnancy. Reporting of sociodemographic, psychiatric, obstetric and oncological characteristics that are important in assessing psychosocial outcomes was inconsistent. None of the studies had a longitudinal design and no supportive care or educational interventions were identified. The gap analysis highlighted the lack of evidence about pathways to diagnosis, impact of late effects and how internal/social resources may affect outcomes. Conclusions: Research has focused on women with gestational breast cancer. Little is known about those diagnosed with other cancers. We encourage future study designs to capture data on sociodemographic, obstetric, oncological and psychiatric characteristics and adopt a longitudinal approach to explore the longer term psychosocial impact on women and their families. Future research should include outcomes that are meaningful for women (and their partners) and draw on international collaboration to accelerate progress in this field.

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.

Objective: To develop a predictive risk model (PRM) for patient-reported anxiety after treatment completion for early stage breast cancer suitable for use in practice and underpinned by advances in data science and risk prediction. Methods: Secondary analysis of a prospective survey of > 800 women at the end of treatment and again 6 months later using patient reported outcome (PRO) the hospital anxiety and depression scale-anxiety (HADS-A) and > 20 candidate predictors. Multiple imputation using chained equations (for missing data) and least absolute shrinkage and selection operator (LASSO) were used to select predictors. Final multivariable linear model performance was assessed (R2) and bootstrapped for internal validation. Results: Five predictors of anxiety selected by LASSO were HADS-A (Beta 0.73; 95% CI 0.681, 0.785); HAD-depression (Beta 0.095; 95% CI 0.020, 0.182) and having caring responsibilities (Beta 0.488; 95% CI 0.084, 0.866) increased risk, whereas being older (Beta - 0.010; 95% CI -0.028, 0.004) and owning a home (Beta 0.432; 95% CI -0.954, 0.078) reduced the risk. The final model explained 60% of variance and bias was low (- 0.006 to 0.002). Conclusions: Different modelling approaches are needed to predict rather than explain patient reported outcomes. We developed a parsimonious and pragmatic PRM. External validation is required prior to translation to digital tool and evaluation of clinical implementation. The routine use of PROs and data driven PRM in practice provides a new opportunity to target supportive care and specialist interventions for cancer patients.

Background Annually, across the world a substantial number of dependent children experience the death of a parent through life-limiting illness. Without support, this has long-term implications for children’s emotional, social and physical well-being, impacting on health and social care services globally. Limited information exists on how service providers are meeting family needs when a parent with dependent children is dying. Aim To determine the bereavement support provided to families with dependent children by UK hospices before and after a parent’s death. Design A 23-item, cross-sectional, web-based survey of adult UK hospices. Closed and open-ended questions were asked about the features of support provided; open ended response was sought to a question about the challenges faced by hospices in delivering support. Descriptive and non-parametric statistics and framework analysis were used to analyse the data. Results 197 hospices were invited to participate. Response rate was 66% (130/197). More types of support were provided after, than before, parental death (mean 6.36/5.64, z = -5.767, p ˂0001). 22% of hospices reported no formal processes for asking or documenting the presence of dependent children. Volunteers were an under-used resource before parental death. Four themes characterised challenges in delivering support for families: emotional difficulties for families; practical and social difficulties for families; funding/resources; and staff training/numbers. Conclusions Family needs are not consistently being met when a parent is dying. Areas for development include: enhanced systems to record when patients have dependent children; flexible approaches to support vulnerable families; staff training to help communication with families and management of their own fears of making the situation worse. Effective educational interventions and service developments to better support staff, parents, and children are needed.

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.

Introduction While some evidence exists that real-time remote symptom monitoring devices can decrease morbidity and prevent unplanned admissions in oncology patients, overall, these studies have significant methodological weaknesses. The eSMART study (electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology) is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised, controlled trial (RCT) of oncology patients. Methods and analysis A total of 1,108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal, or haematological cancer will be recruited from multiple sites across 5 European countries. Patients will be randomised (1:1) to the ASyMS intervention (intervention group) or to standard care currently available at each site (control group). Patients in the control and intervention groups will complete a demographic and clinical questionnaire, as well as a set of valid and reliable electronic patient reported outcome measures (ePROMS) at enrolment, after each of their CTX cycles (up to a maximum of 6 cycles) and at 3, 6, 9 and 12 months after completion of their sixth cycle of CTX. Outcomes that will be assessed include: symptom burden (primary outcome), quality of life (QoL), supportive care needs, anxiety, self-care self-efficacy, work limitations, and cost effectiveness and, from a health professional perspective, changes in clinical practice (secondary outcomes). Ethics and dissemination eSMART received approval from the relevant ethics committees at all of the clinical sites across the 5 participating countries. In collaboration with the European Cancer Patient Coalition (ECPC), the trial results will be disseminated through publications in scientific journals, presentations at international conferences, and postings on the eSMART website and other relevant clinician and consumer websites.

Background Lymphedema is a common consequence of breast cancer treatment requiring life-long treatment to reduce symptoms and prevent complications. Evidence to inform the optimal decongestive lymphedema treatment package is lacking. Objective To identify the effect of decongestive lymphedema treatment on excess arm volume or patient-centered outcomes for women presenting within either 12 months or mean 9 months of developing arm lymphedema following breast cancer treatment. Inclusion criteria Types of participants: women who received lymphedema treatment within either 12 months or mean 9 months of developing unilateral breast cancer-related arm lymphedema. Types of intervention: any decongestive lymphedema treatment delivered with the purpose of reducing arm lymphedema, compared to another form of lymphedema treatment (whether self or practitioner administered), placebo or no treatment. Types of outcomes: clinical outcome was excess arm volume; patient-centered outcomes were health related quality of life, arm heaviness, arm function, patient-perceived benefit and satisfaction with treatment. Types of studies: experimental study designs were eligible, including randomized and non-randomized controlled trials, quasi-experimental, prospective and retrospective before and after studies. Search strategy A three-step search strategy was utilized to find published and unpublished studies. The search identified studies published from inception of each database to 6th July 2016. Reference lists were scanned to identify further eligible studies. Methodological quality Studies were critically appraised using appropriate standardized critical appraisal instruments from The Joanna Briggs Institute. Data extraction Details describing each study and treatment results regarding outcomes of interest were extracted from papers included in the review using appropriate standardized data extraction tools from The Joanna Briggs Institute. Data synthesis Due to heterogeneity in included studies, results for similar outcome measures were not pooled in statistical meta-analysis. A narrative and tabular format was used to synthesize results from identified and included studies. Results Seven studies reporting results for outcomes of interest were critically appraised and included in the review: five randomized controlled trials and two descriptive (uncontrolled) studies. Reported outcomes included excess arm volume (five studies), health-related quality of life (three studies), arm heaviness (one study), arm function (two studies) and patient-perceived benefit (two studies). There was some evidence that decongestive treatments were effective for women presenting within either 12 months or mean 9 months of developing breast cancer-related arm lymphedema, but the wide range of data prevented comparison of treatment findings which limited our ability to answer the review questions. Conclusions Weak evidence (grade B) for the impact of decongestive lymphedema treatment on women with early lymphedema (i.e. less than 12 months duration of BCRL symptoms) did not allow any conclusions to be drawn about the most effective treatment to be offered when these women first present for treatment. Findings provided no justification to support change to current practice. Future primary research needs to focus on the most effective treatment for women when they first present with lymphedema symptoms, e.g. treatment provided within 12 months of developing symptoms. Studies should be adequately powered and recruit women exclusively with less than 12 months duration of BCRL symptoms, provide longer follow-up to monitor treatment effect over time, with comparable treatment protocols, outcome measures and reporting methods.

Pioneering advances have been made in Internet of Things technologies (IoT) in healthcare. This article describes the development and testing of a bespoke IoT system for dementia care. TIHM for dementia is part of the NHS England National Test Bed Programme and has been trailing the deployment of network enabled devices combined with artificial intelligence to improve outcomes for people with dementia and their carers. TIHM uses machine learning and complex algorithms to detect and predict early signs of ill health. The premise is if changes in a person’s health or routine can be identified early on, support can be targeted at the point of need to prevent the development of more serious complications.

Objectives: To develop and evaluate a pilot multi disciplinary education and support group programme for patients with fatigue post cancer treatment. Design: Mixed method feasibility study. Intervention: Programme comprised face-to-face nursing assessment followed by 3 support and information giving workshops. Workshops delivered large group support and small group discussion with therapists of participants' choice. Therapists included a clinical psychologist, nurse, dietician, physiotherapist and occupational therapist. Participants: Six subjects with breast cancer. Main outcome measures: The Brief Fatigue Inventory, Hospital Anxiety and Depression Scale, and the European Organisation for Research and Treatment of Cancer QLQ C30. Participants completed these prior to, immediately after, and six weeks following, the programme. They also completed a programme evaluation by telephone. Results: Preliminary results indicate the programme provided information, support and management strategies for fatigue specifically, and living with cancer generally. Patients appreciated the opportunity to share their experiences whilst at the same time gaining particular help and advice for their own specific problems and concerns. Whilst not reducing the level of fatigue there was some evidence that impact on function was lessened. Conclusions: Whilst the number of participants was small, findings from this study are sufficiently encouraging to warrant continuing this service development and its evaluation. © 2006 Elsevier Ltd. All rights reserved.

This article discusses fatigue in patients receiving palliative care. The article initially considers the prevalence of fatigue in different groups of palliative care patients, then addresses how it manifests before reviewing how it can be assessed and managed. The focus of the article is on palliative care but it draws on, and has relevance for, chronic disease more widely.

Informal carers provide important emotional support to patients having chemotherapy and assistance in monitoring and managing side‐effects. If they are inadequately supported in this, patient and carer morbidity may result. This study explored needs of informal carers supporting patients with cancer having chemotherapy. The study used a mixed methods approach. Carers of colorectal or lymphoma cancer patients at one comprehensive cancer centre participated. Questionnaire data informed semi‐structured interviews conducted with a subsample of respondents. Interviews were analysed using Framework analysis. Questionnaire data were analysed descriptively. Fifty‐nine informal carers were invited to participate; 48 returned the questionnaire (response rate 81%) and 13 were interviewed. Informal carers' needs for information about chemotherapy and its side‐effects were largely met although a third felt completely or somewhat unprepared to deal with particular symptoms experienced by patients at home. Many carers had unmet needs regarding financial support and their own needs as carers. Assertiveness was important to many caring roles, but it appeared difficult for informal carers to adopt when they were unsupported in this and their role was unrecognised by health professionals. Future research should develop interventions to systematically prepare carers for their carer role, improve carer involvement and ultimately improve patient outcomes.

Background: People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the Internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis, and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process. Objective: We explored women’s symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participants’ online searches and visited websites, the VIZZATATM browser tracker. Methods: An online survey was completed by 56 cancer-free women (Mage = 60.34 years, SD = 7.73 years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (Time1) and again after seeking information online (Time2). The online tracking tool, embedded in the survey, was used to capture in real time participants’ search terms and accessed websites. Results: The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (n=10, 18%), there was evidence of engagement in online information-seeking, e.g. medical terminology and cancer attribution at Time2, despite their searching activity not being recorded. Twenty five participants considered cancer as a potential cause for the nipple rash at Time1, yet only one of these used ‘cancer’ as a search term. Most participants (n=40, 87%) used rash-related search terms, particularly ‘nipple rash’ and ‘rash on nipple’. The majority (41/46, 89%) accessed websites containing breast cancer information, with the NHS webpage “Paget’s disease of the nipple” being the most visited one. At Time2, after engaging in the Internet search task, more participants attributed the nipple rash to breast cancer than at Time1, n=37 (66.1%) vs. n=25 (44.6%), although a small number of participants (n=6) changed from making a cancer attribution at Time1 to a non-cancer one at Time2. Conclusions: Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all Internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms. ClinicalTrial: N/A

Objective The aim of this study is to co-create an evidence-based and theoretically informed web-based intervention (RESTORE) designed to enhance self-efficacy to live with cancer-related fatigue (CRF) following primary cancer treatment. Methods A nine-step process informed the development of the intervention: (1) review of empirical literature; (2) review of existing patient resources; (3) establish theoretical framework; (4) establish design team with expertise in web-based interventions, CRF and people affected by cancer; (5) develop prototype intervention; (6) user testing phase 1; (7) refinement of prototype; (8) user testing phase 2; and (9) develop final intervention. Results Key stakeholders made a critical contribution at every step of intervention development, and user testing, which involved an iterative process and resulted in the final intervention. The RESTORE intervention has five sessions; sessions 1 and 2 include an introduction to CRF and goal setting. Sessions 3–5 can be tailored to user preference and are designed to cover areas of life where CRF may have an impact: home and work life, personal relationships and emotional adjustment. Conclusions It is feasible to systematically ‘co-create’ an evidence-based and theory-driven web-based self-management intervention to support cancer survivors living with the consequences of cancer and its treatment. This is the first account of the development of a web-based intervention to support self-efficacy to manage CRF. An exploratory trial to test the feasibility and acceptability of RESTORE is now warranted. Copyright © 2015 John Wiley & Sons, Ltd.

Background: There has been an international shift in health care, which has seen an increasing focus and development of technological and personalized at-home interventions that aim to improve health outcomes and patient-clinician communication. However, there is a notable lack of empirical evidence describing the preparatory steps of adapting and implementing technology of this kind across multiple countries and clinical settings. Objective: This study aimed to describe the steps undertaken in the preparation of a multinational, multicenter randomized controlled trial (RCT) to test a mobile phone–based remote symptom monitoring system, that is, Advanced Symptom Management System (ASyMS), designed to enhance management of chemotherapy toxicities among people with cancer receiving adjuvant chemotherapy versus standard cancer center care. Methods: There were 13 cancer centers across 5 European countries (Austria, Greece, Ireland, Norway, and the United Kingdom). Multiple steps were undertaken, including a scoping review of empirical literature and clinical guidelines, translation and linguistic validation of study materials, development of standardized international care procedures, and the integration and evaluation of the technology within each cancer center. Results: The ASyMS was successfully implemented and deployed in clinical practices across 5 European countries. The rigorous and simultaneous steps undertaken by the research team highlighted the strengths of the system in clinical practice, as well as the clinical and technical changes required to meet the diverse needs of its intended users within each country, before the commencement of the RCT. Conclusions: Adapting and implementing this multinational, multicenter system required close attention to diverse considerations and unique challenges primarily related to communication and clinical and technical issues. Success was dependent on collaborative and transparent communication among academics, the technology industry, translation partners, patients, and clinicians as well as a simultaneous and rigorous methodological approach within the 5 relevant countries.

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.

The aim of this review was to systematically identify, appraise and synthesise qualitative research evidence on the experience of adult cancer patients living with chemotherapy-induced peripheral neuropathy (CIPN). A systematic search of the literature was performed in September 2015. Qualitative studies were included if they investigated CIPN and patient experience. Quality of the articles was appraised using an adapted version of the Critical Appraisal Skill Programme Checklist for Qualitative Research (CASP 2014). Themes were identified using the thematic synthesis approach proposed by Thomas and Harden [BMC Medical Research Methodology 8 (2008) 45]. Five articles presented findings generated by 88 patients who had all received neurotoxic chemotherapy. Sample sizes from included studies varied from 1 to 28 patients; all studies originated from America and were published between 2005 and 2015. Four analytical themes emerged: (1) CIPN is an unclear experience, (2) a less important risk, (3) impact on quality of life and (4) a feature of cancer survivorship. In conducting this synthesis, the lack of qualitative evidence in this specific condition is evident. Further studies are needed outside of America, to focus on CIPN risk communication approaches by healthcare professionals, patient understanding and perception of CIPN risk and interventions to promote early detection of CIPN including effective reporting and assessment.

Purpose To estimate prevalence and severity of patients' self-perceived supportive care needs in the immediate post-treatment phase and identify predictors of unmet need. Patients and Methods A multicenter, prospective, longitudinal survey was conducted. Sixty-six centers recruited patients for 12 weeks. Patients receiving treatment for the following cancers were recruited: breast, prostate, colorectal, and gynecologic cancer and non-Hodgkin's lymphoma. Measures of supportive care needs, anxiety and depression, fear of recurrence, and positive and negative affect were completed at the end of treatment (T0) and 6 months later (T1). Results Of 1,850 patients given questionnaire packs, 1,425 (79%) returned questionnaires at T0, and 1,152 (62%) returned questionnaires at T1. Mean age was 61 years; and most respondents were female (69%) and had breast cancer (57%). Most patients had no or few moderate or severe unmet supportive care needs. However, 30% reported more than five unmet needs at baseline, and for 60% of these patients, the situation did not improve. At both assessments, the most frequently endorsed unmet needs were psychological needs and fear of recurrence. Logistic regression revealed several statistically significant predictors of unmet need, including receipt of hormone treatment, negative affect, and experiencing an unrelated significant event between assessments. Conclusion Most patients do not express unmet needs for supportive care after treatment. Thirty percent reported more than five moderate or severe unmet needs at both assessments. Unmet needs were predicted by hormone treatment, negative mood, and experiencing a significant event. Our results suggest that there is a proportion of survivors with unmet needs who might benefit from the targeted application of psychosocial resources.

Purpose: 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. Method: 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. Results: 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 Conclusions: 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.

Background: Evidence suggests patients delay reporting symptoms of neutropenic sepsis (NS) despite the risk to their life. This study aimed to elicit factors that contribute to delayed patient reporting of NS symptoms.Methods: A constructivist grounded theory study used observations of chemotherapy consultations (13 hours) and 31 in-depth interviews to explore beliefs, experiences and behaviors related to NS. Participants included women with breast cancer, their carers (partners, family or friends) and clinicians. An explanation for patient delays was developed through theoretical sampling of participants to explore emerging areas of interest and through constant comparison of data and their coding. This entailed iterative and concurrent data collection and analysis. Data were collected until saturation.Results: All patients who developed NS type symptoms delayed presenting to hospital (2.5 hours - 8 days), sometimes repeatedly. Moderators of delay included metastatic disease, bereavement, fatalism, religious beliefs and quality of relationships with clinicians. There was an interplay of behaviours between clinicians, patients and carers where they subconsciously conspired to underplay the seriousness and possibility of NS occurring. Conclusions: Findings have implications for health risk communication and development of holistic service models.

Background: Net survival rates for cancer are increasing worldwide, placing a strain on health service provision. There is a drive to transfer care of cancer survivors - individuals living with and beyond cancer - to the community and encourage them to play an active role in their own care. Telehealth, the use of technology in remote exchange of data and communication between patients and healthcare professionals, is an important contributor to this evolving model of care and may offer additional benefits to cancer survivors. Telehealth is a complex intervention and understanding patient experiences of it is important in evaluating its impact. However, a wider view of patient experience is lacking as qualitative studies detailing cancer survivor engagement with telehealth have yet to be synthesised. Objective: Systematically identify, appraise and synthesise qualitative research evidence on the experiences of adult cancer survivors participating in telehealth intervention(s), to characterise the patient experience of telehealth interventions for this group. Methods: Medline (PubMed), PsychINFO, CINAHL (Cumulative Index for Nursing and Allied Health Professionals), Embase and Cochrane Central Register of Controlled Trial were searched on 14th August 2015 and 8th March 2016 for English-language papers published between 2006 and 2016. Inclusion criteria were: adult cancer survivors aged 18 and over; cancer diagnosis; experience of participating in a telehealth intervention (defined as remote communication and/or remote monitoring with a healthcare professional(s) delivered by telephone, internet, or hand-held/mobile technology); reporting qualitative data including verbatim quotes. An adapted Critical Appraisal Skill Programme (CASP) Checklist for Qualitative Research was used to assess paper quality. The results section of each included article was coded line by line and all papers underwent inductive analysis, involving comparison, re-examination and grouping of codes to develop descriptive themes. Analytical themes were developed through an iterative process of reflection on, and interpretation of, the descriptive themes within and across studies. Results: 22 papers were included. Three analytical themes emerged, each with three descriptive subthemes: 1. Influence of telehealth on the disrupted lives of cancer survivors a. Convenience b. Independence c. Burden 2. Personalised care in a virtual world a. Time b. Space c. The human factor 3. Remote reassurance – a safety net of healthcare professional connection a. Active connection b. Passive connection c. Slipping through the net Telehealth interventions represent a convenient approach which can potentially minimise treatment burden and disruption to cancer survivors’ lives. Telehealth interventions can facilitate an experience of personalised care and reassurance for those living with and beyond cancer, but it is important to consider individual factors when tailoring interventions to ensure engagement promotes benefit rather than burden. Conclusions: Telehealth interventions can provide cancer survivors with both independence and reassurance; both important for everyday life or wellbeing. Future telehealth interventions need to be developed iteratively and in collaboration with a broad range of cancer survivors to maximise engagement and benefit.

Effective symptom management is a critical component of cancer treatment. Computational tools that predict the course and severity of these symptoms have the potential to assist oncology clinicians to personalize the patient's treatment regimen more efficiently and provide more aggressive and timely interventions. Three common and inter-related symptoms in cancer patients are depression, anxiety, and sleep disturbance. In this paper, we elaborate on the efficiency of Support Vector Regression (SVR) and Non-linear Canonical Correlation Analysis by Neural Networks (n-CCA) to predict the severity of the aforementioned symptoms between two different time points during a cycle of chemotherapy (CTX). Our results demonstrate that these two methods produced equivalent results for all three symptoms. These types of predictive models can be used to identify high risk patients, educate patients about their symptom experience, and improve the timing of pre-emptive and personalized symptom management interventions.

Purpose: To identify potential candidate predictors of anxiety in women with early stage breast cancer (BC) after adjuvant treatments and evaluate methodological development of existing multivariable models to inform the future development of a predictive risk stratification model (PRSM). Methods: Databases (MEDLINE, Web of Science, CINAHL, CENTRAL and PsycINFO) were searched from inception to November 2015. Eligible studies were prospective, recruited women with stage 0-3 BC, used a validated anxiety outcome ≥ 3 months' post-treatment completion and used multivariable prediction models. Internationally accepted quality standards were used to assess predictive risk of bias and strength of evidence. Results: Seven studies were identified, five were observational cohorts and two secondary analyses of RCTs. Variability of measurement and selective reporting precluded meta-analysis. Twenty-one candidate predictors were identified in total. Younger age and previous mental health problems were identified as risk factors in ≥ 3 studies. Clinical variables (e.g. treatment, tumour grade) were not identified as predictors in any studies. No studies adhered to all quality standards. Conclusions: Pre-existing vulnerability to mental health problems and younger age increased the risk of anxiety after completion of treatment for BC survivors, but there was no evidence that chemotherapy was a predictor. Multiple predictors were identified but many lacked reproducibility or were not measured across studies, and inadequate reporting did not allow full evaluation of the multivariable models. The use of quality standards in the development of PRSM within supportive cancer care would improve model quality and performance thereby allowing professionals to better target support for patients.

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: To evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis (LCA) and K-modes analysis. Methods: Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale (MSAS), 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 LCA 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, 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 MSAS 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 provides the most sensitive and specific risk profiles.

Some oncology outpatients experience a higher number of and more severe symptoms during chemotherapy (CTX). However, little is known about whether this high risk phenotype persists over time. Latent transition analysis (LTA) was used to examine the probability that patients remained in the same symptom class when assessed prior to the administration of and following their next dose of CTX. For the patients whose class membership remained consistent, differences in demographic and clinical characteristics, and quality of life (QOL) were evaluated. The Memorial Symptom Assessment Scale (MSAS) was used to evaluate symptom burden. LTA was used to identify subgroups of patients with distinct symptom experiences based on the occurrence of the MSAS symptoms. Of the 906 patients evaluated, 83.9% were classified in the same symptom occurrence class at both assessments. Of these 760 patients, 25.0% were classified as Low-Low, 44.1% as Moderate-Moderate and 30.9% as High-High. Compared to the Low-Low class, the other two classes were younger, more likely to be women and to report child care responsibilities, and had a lower functional status and a higher comorbidity scores. The two higher classes reported lower QOL scores. The use of LTA could assist clinicians to identify higher risk patients and initiate more aggressive interventions.

Purpose: Obtain consensus on research priorities for cancer nursing research in the UK. Design: A 3-round online Delphi survey Setting: Oncology nurses were invited via the UK Oncology Nursing Society (UKONS) database. Patient participation was invited through patient organisations. Sample: 50 oncology nurses and 18 patients Methods: Eligible and consenting individuals reported five priorities for cancer nursing research (round 1), rated their level of agreement with them (round 2), and re-stated/revised their responses in light of the group’s (round 3). Consensus was defined as 80% agreement. Findings: Consensus was reached on 50/107 research priorities. These priorities reflected the entire cancer pathway, from diagnosis to palliative care. Highest agreement was reached within and across groups on the need for research relating to prevention, screening and early diagnosis and psychological care across the cancer trajectory. Little consensus was reached regarding symptoms and sideeffects. There was some evident divergence: only patients reached consensus regarding palliative care research and only nurses on eHealth and technology research. Conclusions: Oncology nurses and patients do not necessarily prioritise the same research areas. Prevention, screening and early diagnosis are considered of highest priority for future research across both oncology nurses and patients. Implications for nursing: Patients usually play little part in priority setting for research. This study provided the opportunity for meaningful patient and nurse involvement in setting a research agenda for cancer nursing that is relevant and beneficial to both cancer nurses and patients.

Background: With life expectancy continuing to rise in the United Kingdom there is an increasing public health focus on the maintenance of physical independence among all older adults. Identifying interventions that improve physical outcomes in pre-frail and frail older adults is imperative. Methods: A systematic review of the literature 2000 to 2017 following PRISMA guidelines and registered with PROSPERO (no. CRD42016045325). Results: Ten RCT trials fulfilled selection criteria and quality appraisal. The study quality was moderate to good. Interventions included physical activity; nutrition, physical activity combined with nutrition. Interventions that incorporated one or more physical activity components significantly improved physical outcomes in pre-frail and/or frail older adults. Conclusions: Physical activity interventions are key to maintaining independence in pre-frail and frail older adults. A lack of consensus regarding the definition of frailty, and an absence of core measures to assess this means any attempt to create an optimal intervention will be impeded. This absence may ultimately impact on the ability of older and frail adults to live well and for longer in the community.

Background Prostate cancer (PC) is common and affects Black African and Caribbean men disproportionately more than White men. It is known that PC awareness is low in these groups, but knowledge is lacking about other factors that may deter Black men from seeking information about, or getting tested for, PC. The aim of this review was to appraise research on knowledge and perceptions of PC among Black men. Methods Four medical and social science databases were systematically searched, and reference lists of relevant papers were hand searched. Non-English publications were excluded. Qualitative findings were synthesised using comparative thematic analysis to which quantitative findings were integrated. Results Thirteen qualitative studies and 20 cross-sectional surveys were included. All except two were conducted in the USA. The analysis identified individual, cultural and social factors likely to impact on Black men's awareness of, and willingness to be tested for, PC. Black men's awareness of personal risk of PC varied greatly between studies. Misunderstandings regarding methods of diagnosis and treatment were widespread. PC testing and treatment were perceived as a threat to men's sense of masculinity. Mistrust of the health-care system, limited access to health care and lack of trusting relationships with health professionals were also prominent. Conclusion The factors impacting on Black men's awareness of PC may contribute to late PC diagnosis and should be taken into account when communicating with Black men seeking prostate care. Further, the review demonstrated a need for high-quality studies in countries other than the USA to determine the relevance of the review findings for Black men in other nations and continents.

Background: Children need to be prepared for the death of a parent and supported afterwards. Parents seek support from health and social care professionals to prepare their children. Support is not always forthcoming. Aim: To systematically identify, analyse and synthesise literature reporting of the experiences of health and social care professionals when supporting parents and children during, and following, the death of a parent. Design: A systematically constructed qualitative review and thematic synthesis. Registered on Prospero (CRD42017076345). Data sources: MEDLINE, CINAHL, Embase, PsycINFO, PsycARTICLES and PROSPERO, searched from January 1996 to July 2018 for qualitative studies in English, containing verbatim reporting of health and social care professionals’ experiences of supporting parents and children during, and following, the death of a parent. Qualitative data were appraised using a modified Critical Appraisal Skills Programme qualitative appraisal checklist. Results: The search yielded 15,758 articles. Of which, 15 met the inclusion criteria. A total of 13 included professionals’ experiences of supporting parents and children before parental death. Two included experiences of supporting surviving parents and children afterwards. Three analytical themes identified as follows: (1) aspiring to deliver family-focussed care, (2) health and social care professionals’ behaviours and emotions and (3) improving connections with parents and children. Connecting empathically with parents and children to prepare and support children entails significant emotional labour. Professionals seek to enhance their confidence to connect. Conclusion: Professionals struggle to connect empathically with parents and their children to prepare and to support children when a parent is dying and afterwards. Awareness of professionals’ needs would enable provision of appropriate support for parents and children.

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 To evaluate the concordance between the number and types of subgroups of patients with distinct symptom profiles using latent class analysis (LCA) and K-modes analysis. Methods Using data on the occurrence of 25 symptoms from the Memorial Symptom Assessment Scale (MSAS), 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 LCA 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, 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 MSAS 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 provides the most sensitive and specific risk profiles.

Purpose Cancer-related fatigue (CRF) is a frequent and distressing symptom experienced after cancer treatment. RESTORE is the first web-based resource designed to enhance self-efficacy to manage CRF following curative-intent treatment. The aim of this study is to test the proof of concept and inform the design of an effectiveness trial. Methods A multi-centre parallel-group two-armed (1:1) exploratory randomised controlled trial (RCT) with qualitative process evaluation was employed in the study. Participants (≥18 years; ≤5 years post treatment with moderate to severe fatigue) were recruited and randomly assigned to RESTORE or a leaflet. Feasibility and acceptability were measured by recruitment, attrition, intervention adherence, completion of outcome measures and process evaluation. Change in self-efficacy to manage CRF was also explored. Outcome measures were completed at baseline (T0), 6 weeks (T1) and 12 weeks (T2). Data were analysed using mixed-effects linear regression and directed content analysis. Results One hundred and sixty-three people participated in the trial and 19 in the process evaluation. The intervention was feasible (39 % of eligible patients consented) and acceptable (attrition rate 36 %). There was evidence of higher fatigue self-efficacy at T1 in the intervention group vs comparator (mean difference 0.51 [−0.08 to 1.11]), though the difference in groups decreased by 12 weeks. Time since diagnosis influenced perceived usefulness of the intervention. Modifications were suggested. Conclusion Proof of concept was achieved. The RESTORE intervention should be subject to a definitive trial with some adjustments. Provision of an effective supportive resource would empower cancer survivors to manage CRF after treatment completion.

Objectives: Understanding barriers to early diagnosis of symptomatic breast cancer among Black African, Black Caribbean and White British women in the UK. Design: In-depth qualitative interviews using grounded theory methods to identify themes. Findings validated through focus groups. Participants: 94 women aged 33-91 years; 20 Black African, 20 Black Caribbean and 20 White British women diagnosed with symptomatic breast cancer were interviewed. Fourteen Black African and 20 Black Caribbean women with (n=19) and without (n=15) breast cancer participated in six focus groups. Setting: Eight cancer centres/hospital trusts in London (n=5), Somerset (n=1), West Midlands (n=1) and Greater Manchester (n=1) during 2012-2013. Results: There are important differences and similarities in barriers to early diagnosis of breast cancer between Black African, Black Caribbean and White British women in the UK. Differences were influenced by country of birth, time spent in UK and age. First generation Black African women experienced most barriers and longest delays. Second generation Black Caribbean and White British women were similar and experienced fewest barriers. Absence of pain was a barrier for Black African and Black Caribbean women. Older White British women (≥70 years) and first generation Black African and Black Caribbean women shared conservative attitudes and taboos about breast awareness. All women viewed themselves at low risk of the disease, and voiced uncertainty over breast awareness and appraising non-lump symptoms. Focus group findings validated and expanded themes identified in interviews. Conclusions: Findings challenged reporting of Black women homogenously in breast cancer research. This can mask distinctions within and between ethnic groups. Current media and health promotion messages need reframing to promote early presentation with breast symptoms. Working with communities and developing culturally appropriate materials may lessen taboos and stigma, raise awareness, increase discussion of breast cancer and promote prompt help-seeking for breast symptoms among women with low cancer awareness.

Background: There are over 25 million people worldwide living with or beyond cancer and this number is increasing. Cancer survivors face a range of problems following primary treatment. One of the most frequently reported and distressing symptoms experienced by cancer survivors is fatigue. There is growing support for survivors who are experiencing problems after cancer treatment to engage in supported self-management. To date there is some evidence of effective interventions to manage fatigue in this population; however, to our knowledge there are no online resources that draw on this information to support self-management of fatigue. This paper describes the protocol for an exploratory randomized controlled trial of an online intervention to support self-management of cancer-related fatigue after primary cancer treatment. Methods/design: This is a parallel-group two-armed (1:1) exploratory randomized controlled trial including 125 cancer survivors experiencing fatigue (scoring ≥4 on a unidimensional 11-point numeric rating scale for fatigue intensity) within five years of primary treatment completion with curative intent. Participants will be recruited from 13 NHS Trusts across the UK and randomized to either the online intervention (RESTORE), or a leaflet comparator (Macmillan Cancer Backup, Coping with Fatigue). The primary outcome is a change in Perceived Self-Efficacy for Fatigue Self-Management (as measured by the Perceived Self-Efficacy for Fatigue Self-Management Instrument). Secondary outcomes include impact on perception and experience of fatigue (measured by the Brief Fatigue Inventory), and quality of life (measured by the Functional Assessment of Cancer Therapy - General and the Personal Wellbeing Index). Outcome measures will be collected at baseline, 6 weeks (completion of intervention), and 3 months. Process evaluation (including telephone interviews with recruiting staff and participants) will determine acceptability of the intervention and trial processes. Discussion: Data from this trial will be used to refine the intervention and contribute to the design of an effectiveness trial. This intervention will be expanded to address other cancer-related problems important to cancer survivors following primary cancer treatment.

Objective: To explore barriers to early presentation and diagnosis with breast cancer among black women. Design: Systematic review. Methods: We searched multiple bibliographic databases (January 1991–February 2013) for primary research, published in English, conducted in developed countries and investigating barriers to early presentation and diagnosis with symptomatic breast cancer among black women (≥18 years). Studies were excluded if they did not report separate findings by ethnic group or gender, only reported differences in time to presentation/diagnosis, or reported on interventions and barriers to cancer screening. We followed Cochrane and PRISMA guidance to identify relevant research. Findings were integrated through thematic synthesis. Designs of quantitative studies made meta-analysis impossible. Results: We identified 18 studies (6183 participants). Delay was multifactorial, individual and complex. Factors contributing to delay included: poor symptom and risk factor knowledge; fear of detecting breast abnormality; fear of cancer treatments; fear of partner abandonment; embarrassment disclosing symptoms to healthcare professionals; taboo and stigmatism. Presentation appears quicker following disclosure. Influence of fatalism and religiosity on delay is unclear from evidence in these studies. We compared older studies (≥10 years) with newer ones (

Objectives: Walking is an adaptable, inexpensive and accessible form of physical activity. However its impact on quality of life and symptom severity in people with advanced cancer is unknown. This study aimed to assess the feasibility and acceptability of a randomised controlled trial (RCT) of a community-based walking intervention to enhance quality of life (QoL) in people with recurrent/metastatic cancer. Design: We used a mixed-methods design comprising a two-centre RCT and nested qualitative interviews. Participants: Patients with advanced breast, prostate, gynaecological or haematological cancers randomised 1:1 between intervention and usual care. Intervention: The intervention comprised Macmillan’s ‘Move More’ information, a short motivational interview with a recommendation to walk for at least 30 minutes on alternate days and attend a volunteer-led group walk weekly. Outcomes: we assessed feasibility and acceptability of the intervention and RCT by evaluating study processes (rates of recruitment, consent, retention, adherence and adverse events), and using end of study questionnaires and qualitative interviews. Patient reported outcome measures (PROMS) assessing quality of life (QoL), activity, fatigue, mood and self-efficacy were completed at baseline and 6, 12 and 24 weeks. Results: We recruited 42 (38%) of eligible participants. Recruitment was lower than anticipated (goal n=60), the most commonly reported reason being unable to commit to walking groups (n=19). Randomisation procedures worked well with groups evenly matched for age, sex and activity. By week 24, there was a 45% attrition rate. Most PROMs whilst acceptable were not sensitive to change and did not capture key benefits. Conclusions: The intervention was acceptable, well tolerated and the study design was judged acceptable and feasible. Results are encouraging and demonstrate that exercise was popular and conveyed benefit to participants. Consequently, an effectiveness RCT is warranted, with some modifications to the intervention to include greater tailoring and more appropriate PROMs selected.

Background Cancer-related fatigue is a significant clinical problem and is a symptom commonly experienced by patients with differing cancer types during and following treatment. It is a distressing symptom which interferes with functioning in daily life. However, much less is known about the prevalence and severity of fatigue in prostate cancer when compared to other cancer types, such as breast cancer. Methods A systematic review was conducted to appraise the prevalence and severity of cancer-related fatigue in prostate cancer. Systematic searches of published quantitative research relating to the prevalence and severity of fatigue were conducted using databases, including Medline, PsychINFO, CINAHL and ISI Web of Knowledge (January 2012). Included papers measured the prevalence or severity of prostate-cancer-related fatigue and differentiated fatigue outcomes (prevalence, severity) between treatment modalities. Results Nineteen studies were eligible for the review, of which 17 were cross-sectional and 2 longitudinal. Findings suggest that the prevalence of any fatigue is as high as 74 %, whilst chronic fatigue prevalence was highest (39 %) when hormone therapy was combined with radiotherapy. Fatigue severity is reported as worse in hormone therapy and treatment combining hormone therapy and radiotherapy. Conclusions Fatigue is a common symptom for men with prostate cancer, particularly those prescribed hormone therapy. A wide variety of tools were used to measure fatigue prevalence and severity, which made comparisons across studies difficult. The review is limited by methodological shortcomings in the studies included.

OBJECTIVES: Changes in health-care provision have led to cancer patients being offered oral chemotherapy in the community. Three levels of oral chemotherapy services have been proposed (levels 1, 2 and 3) with community pharmacies playing differing roles within them. This study aims to explore health-care professionals' views on oral chemotherapy services being delivered by community pharmacies and to gain insights into the barriers, facilitators and training/knowledge needs of community pharmacists with respect to providing them. METHODS: Qualitative semi-structured interviews were conducted with a purposive sample of three chemotherapy nurses, five oncology pharmacists and five community pharmacists. Data were analysed thematically using Framework Analysis. KEY FINDINGS: Findings for level 1 and 2 services included uncertainty on community pharmacists' professional responsibilities, the expertise of GPs in prescribing oral chemotherapy and the training and competency of community pharmacists. The lack of patient information, care and support provision was emphasised for all the models. Although level 1 was achievable in current practice, level 2 was considered the safest option, while level 3 was ideal but risky option. For all levels, training and education for community pharmacists and inter-professional issues were facilitators to oral chemotherapy services. The service environment, dispensing process-related constraints (access to blood test results and protocols) were significant barriers for levels 2 and 3. Advanced communication skills, patient education and counselling were identified as key areas for education and training for community pharmacists. CONCLUSION: The study suggests there are significant concerns and challenges associated with community pharmacies implementing any of the proposed levels of oral chemotherapy services. Educational and training opportunities for community pharmacists and the careful development of safe infrastructures will be essential in the future planning and implementation of any community pharmacy oral chemotherapy service.

Background: As the number of breast cancer survivors continues to rise, Western populations become more ethnically and socially diverse and healthcare resources become ever-more stretched, follow-up that focuses on monitoring for recurrence is no longer viable. New models of survivorship care need to ensure they support selfmanagement and are culturally appropriate across diverse populations. This study explored experiences and expectations of a multi-ethnic sample of women with breast cancer regarding post-treatment care, in order to understand potential barriers to receiving care and inform new models of survivorship care. Methods: A phenomenological qualitative research design was employed. In-depth interviews were conducted with women from diverse socio-demographic backgrounds in England, who completed treatment for breast cancer in the 12 months prior to the study. Data were analysed using Framework Analysis. Results: Sixty-six women participated and reported expectations and needs were unmet at follow-up. Whilst there were more commonalities in experiences, discernible differences, particularly by ethnicity and age, were identified relating to three key themes: emotional responses on transition to follow-up; challenges communicating with healthcare professionals at follow-up; and challenges finding and accessing information and support services to address unmet needs. Conclusions: There are cultural differences in the way healthcare professionals and women communicate, not necessarily differences in their post-treatment needs. We do not know if new models of care meet survivors’ needs, or if they are appropriate for everyone. Further testing and potential cultural and linguistic adaptation of models of care is necessary to ensure their appropriateness and acceptability to survivors from different backgrounds. New ways of providing survivorship care mean survivors will need to be better prepared for the post-treatment period and the role they will have to play in managing their symptoms and care.

People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process. We explored women's symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participant online searches and visited websites, the Vizzata browser tracker. An online survey was completed by 56 cancer-free women (mean age 60.34 [SD 7.73] years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (T1) and again after seeking information online (T2). The online tracking tool, embedded in the survey, was used to capture in real time participant search terms and accessed websites. The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (10/56, 18%), there was evidence of engagement in online information-seeking (eg, medical terminology and cancer attribution at T2) despite their searching activity not being recorded. A total of 25 participants considered cancer as a potential cause for the nipple rash at T1, yet only one of these used cancer as a search term. Most participants (40/46, 87%) used rash-related search terms, particularly nipple rash and rash on nipple. The majority (41/46, 89%) accessed websites containing breast cancer information, with the National Health Service webpage "Paget disease of the nipple" being the most visited one. At T2, after engaging in the internet search task, more participants attributed the nipple rash to breast cancer than at T1 (37/46, 66% vs 25/46, 45%), although a small number of participants (6/46) changed from making a cancer attribution at T1 to a noncancer one at T2. Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms.

Objective: The objective of this scoping review is to identify and map support interventions provided during palliative care to families with dependent children when a parent has a terminal illness. Introduction: For dependent children, losing a parent through terminal illness can be one of the most traumatic experiences they will face. Without age-appropriate information and support, parental death can lead to unresolved grief, post-traumatic stress, and longer-term negative social, emotional, educational, and behavioral consequences. Support from health care professionals is provided, but challenges within hospice and community palliative care mean the needs of dependent children may not be addressed. Greater emphasis is often placed on children's and families’ bereavement needs as opposed to their pre-bereavement needs. The status of pre-bereavement support in palliative care for these families has not been documented. Inclusion criteria: We will include studies of support interventions provided to families with dependent children when a parent has a terminal illness that are delivered during palliative care and in settings including, but not limited to, hospices, hospitals, and the community (including family and care homes). Empirical, peer-reviewed studies based on qualitative, quantitative, or mixed methods data, and gray literature, reporting any stage of intervention development will be included. Methods: This review will follow the JBI approach for scoping reviews. Multiple database searches will be conducted. Two authors will independently review full-text articles and extract data. Interventions will be mapped in terms of characteristics, evaluation methods, and implementation challenges. Data will be presented in tables, diagrammatic form, and narrative summary.

This paper reviews the literature concerning the role of information in facilitating patients' adaptation to chemotherapy and radiotherapy. The relationship between information and patient self-efficacy is examined, and the information requirements of cancer patients receiving treatment are reviewed. Finally, studies evaluating informational interventions for patients receiving either chemotherapy or radiotherapy are critiqued before recommendations for practice are formulated.

Cancer-related fatigue is a symptom with great implications for the quality of life of those that experience it. It is regarded as one of the most distressing symptoms that people with cancer develop. Its aetiology is complex, and although the mechanisms underlying fatigue have not been fully clarified it is evident that it is exacerbated by treatments intended to cure or palliate the disease. Patients at risk of cancer-related fatigue need access to information that will enable them to manage it effectively. There are a growing number of materials available to patients in different European countries on this topic, but it is unclear how useful patients find these. This study was undertaken to explore this through conducting focus groups with patients in the United Kingdom and Switzerland. One focus group was conducted in each country. Findings from these determined that individuals voiced common concerns: fatigue had not been addressed in the clinical setting - individuals surmised why this occurred; participants had not accessed materials on cancer-related fatigue previously; they made recommendations for future resources for patients. However, what was evident was that unless patients can access materials on this topic, their quality becomes purely an academic issue.

Fatigue has been recognized as the most frequently reported symptom of cancer and cancer therapy. There is a lack of research on such aspects as the pattern of fatigue which accompanies treatment, its exacerbating and relieving factors, the different mechanisms of fatigue and its relationship with the factors purported to be related to the fatigue experience. It has been suggested that cancer patients may be those best placed to reveal the likely causes of fatigue. As part of a larger study examining the pattern of fatigue in cancer patients who were undergoing a course of chemotherapy treatment, patients' perceptions of fatigue and tiredness and the nature, pattern and causes of fatigue in relation to cancer and its treatment were obtained. In addition to a diary, interviews were conducted at two time points, at the beginning and end of a cycle of chemotherapy, with over 100 cancer patients. Just under 90% of the sample reported fatigue at some point during a cycle of chemotherapy. The majority of the sample did not consider tiredness and fatigue to constitute the same feelings. Subjects attributed their fatigue to a combination of factors but most frequently mentioned treatment, changes in sleep patterns and other symptoms. Implications for practice and research are outlined.

PURPOSE/OBJECTIVES: To review the evidence available to guide the development of interventions to alleviate cancer-related fatigue. DATA SOURCES: Published fatigue theories and research describing patients' self-care strategies and the efficacy of interventions for the management of fatigue. DATA SYNTHESIS: Fatigue is a pervasive problem for patients with cancer. Without guidance, patients adopt common-sense strategies that generally prove unsuccessful in alleviating fatigue. Theories that identify self-care actions that can reduce fatigue are becoming increasingly sophisticated. A small number of strategies, most notably exercise, has been evaluated. Other interventions--educational, attention-restoring, and psychosocial--have been tested to a lesser extent. The theoretical foundations of these experimental studies frequently are unclear. However, primary evidence is favorable and supports further evaluation. CONCLUSIONS: Passive approaches frequently fail to reduce fatigue in patients with cancer. Alternative approaches based on the growing body of theoretical and research evidence should be adopted. IMPLICATIONS FOR NURSING PRACTICE: Patients require guidance in managing cancer-related fatigue. Nurses need to develop and evaluate relief interventions. Systematic research programs based on sound theoretical premises and previous research will contribute to the growing body of evidence to aid future management of this troublesome symptom.

Preparatory sensory information is essential for cancer patients receiving chemotherapy. Accurate sensory information prepares them for the sounds, sights, and sensations that they will encounter before during, and after treatment. This study investigates and describes the sensory perceptions and coping styles of cancer patients receiving chemotherapy, and compares the results with those reported from studies conducted in the USA. The data were collected through telephone interviews using the Sensory Information Questionnaire (Rhodes et al 1994). Following the presentation of the findings, the article concludes by making recommendations to reduce patients' anxiety during outpatient administration of chemotherapy. © Pearson Professional Ltd 1997.

Increasing numbers of people in the UK are living with recurrent or metastatic cancer, many of whom experience reduced quality of life resulting from the physical and psychosocial consequences of cancer and its treatment. While drug treatments are important at alleviating some symptoms, there is increasing evidence of the benefits of exercise in enhancing quality of life and health outcomes. Walking is an inexpensive and accessible form of exercise. To our knowledge, no studies have investigated whether a walking intervention is sufficient to enhance quality of life and alleviate symptoms in people with recurrent or metastatic cancer across a range of tumor types. This paper describes the CanWalk study protocol, which aims to assess the feasibility and acceptability of undertaking a randomized controlled trial of a community-based walking program to enhance quality of life and well …

Nurse-led Peripherally Inserted Central Venous Catheter (PICC) services are becoming commonplace in cancer centres across the UK. Research has shown that these services are cost-effective and are associated with fewer catheter-related complications, including infection and thrombosis, than skin-tunnelled catheters. This exploratory study aimed to explore patients' and nurses' experiences of a nurse-led PICC line service. Recorded interviews were conducted with 10 cancer patients with PICC lines inserted, five hospital-based nurses and five community-based nurses experienced in caring for patients with these lines. Respondents' recorded accounts were transcribed, coded and analysed to determine patients' and nurses' perceptions of the service and the extent to which collaborative practice was promoted. Findings were synthesized into five themes: Education, Formation of Expectations, Confidence, Sensory Experience and Adaptation. All respondent groups were positive about the PICC line service and the specialist oncology nurses working within it. The findings did identify some aspects of the service which could be improved, including the timing of information given to patients and the use of more innovative educational approaches. This study has informed the development of a potential flexible service structure which may be incorporated into established and differing care settings using existing resources. © 2000 Harcourt Publishers Ltd.

Background: A positive aspect of pain is that it warns us of potential or actual bodily damage but if it persists its benefits are lost and it becomes a chronic condition with disabling and costly consequences. Pain is a common symptom suffered by people with cancer but it is unclear if people with cancer pain require further help from healthcare professionals in order to treat their pain holistically using a biopsychosocial approach. Purpose: To identified the unmet supportive care needs of people with cancer pain; and to explore the relationship between symptoms such as pain and unmet supportive care needs. Method: A quantitative approach has been used to explore the unmet supportive care needs of people with cancer pain. One hundred and sixty two people, who required around the clock analgesia, completed a validated needs assessment tool, at two Time Points, in order to investigate whether they had any issues or problems that they required further assistance with over a 2 month period. The data was analysed using descriptive statistics and backwards logistic regression. Findings: Eighty percent of the participants had at least 1 unmet need. The main areas where people needed more help were in the psychological and physical daily living domains. Psychologically, people had concerns about their loved ones and uncertainly about their future. Physically, people wanted more help with fatigue and not being able to do their usual activities. People with uncontrolled pain and breakthrough pain equally needed as much help in these areas, emphasising that even if people only have intermittent pain it has a huge impact on a person’s psychological and physical wellbeing. The participants’ unmet needs improved over time but this was not dependant on a change in the control of pain. Conclusion: The psychosocial needs of people with cancer pain are not being met if they have uncontrolled or breakthrough pain. Pain assessments should include an assessment of unmet needs. However, due to the subject nature of unmet needs it is difficult to demonstrate that that inventions, that are intended to reduce unmet needs, are effective.