Real time remote symptom monitoring during chemotherapy for cancer: European multicentre randomised controlled trial (eSMART).

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<0.001; Cohen's D effect size=0.5). Analysis of MSAS sub-domains indicated significant reductions in favour of ASyMS for global distress index (-0.21, -0.27 to -0.16; P<0.001), psychological symptoms (-0.16, -0.23 to -0.10; P<0.001), and physical symptoms (-0.21, -0.26 to -0.17; P<0.001). FACT-G scores were higher in the intervention group across all cycles (mean difference 4.06, 95% confidence interval 2.65 to 5.46; P<0.001), whereas mean scores for STAI-R trait (-1.15, -1.90 to -0.41; P=0.003) and STAI-R state anxiety (-1.13, -2.06 to -0.20; P=0.02) were lower. CASE-Cancer scores were higher in the intervention group (mean difference 0.81, 0.19 to 1.43; P=0.01), and most SCNS-SF34 domains were lower, including sexuality needs (-1.56, -3.11 to -0.01; P<0.05), patient care and support needs (-1.74, -3.31 to -0.16; P=0.03), and physical and daily living needs (-2.8, -5.0 to -0.6; P=0.01). Other SCNS-SF34 domains and WLQ were not significantly different. Safety of ASyMS was satisfactory. Neutropenic events were higher in the intervention group. CONCLUSIONS: Significant reduction in symptom burden supports the use of ASyMS for remote symptom monitoring in cancer care. A "medium" Cohen's effect size of 0.5 showed a sizable, positive clinical effect of ASyMS on patients' symptom experiences. Remote monitoring systems will be vital for future services, particularly with blended models of care delivery arising from the covid-19 pandemic. TRIAL REGISTRATION: Clinicaltrials.gov NCT02356081.

Development and preliminary testing of a brief clinical tool to enable daily monitoring of chemotherapy toxicity: The Daily Chemotherapy Toxicity self-Assessment Questionnaire.

Close monitoring of chemotherapy toxicity can be instrumental in ensuring prompt symptom management and quality care. Our aim was to develop a brief clinical tool to enable daily assessment of chemotherapy toxicity and investigate/establish its content validity, feasibility/applicability, internal consistency and stability. Development of the Daily Chemotherapy Toxicity self-Assessment Questionnaire (DCTAQ) was based on an initial item pool created from two scoping reviews. Expert panel review (n = 15) and cognitive debriefing with patients with cancer (n = 7) were used to establish content validity. Feasibility/acceptability, applicability (self-report vs. interview-like administration), internal consistency (KR-20) and test-retest reliability (at 1-hr intervals) of the DCTAQ were field-tested with 82 patients with breast or colorectal cancer receiving active chemotherapy at eight hospitals. Initial development/content validity stages enabled item revisions and re-wording that led to a final, 11-item DCTAQ version with 10 core symptom items plus one open-ended "any other symptom" item. Feasibility and acceptability were demonstrated through the absence of participant withdrawals, absence of missing data and no complaints about tool length. The DCTAQ was found to have modest internal consistency (KR-20 = 0.56), but very good test-retest reliability. The DCTAQ is a brief clinical tool that allows for rapid and accurate daily assessments of chemotherapy toxicity in clinical practice.

The eSMART study protocol: a randomised controlled trial to evaluate electronic symptom management using the advanced symptom management system (ASyMS) remote technology for patients with cancer.

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 electronic Symptom Management using the Advanced Symptom Management System (ASyMS) Remote Technology (eSMART) study is designed to specifically address these weaknesses with an appropriately powered, repeated-measures, parallel-group stratified randomised controlled trial of oncology patients. METHODS AND ANALYSIS: A total of 1108 patients scheduled to commence first-line chemotherapy (CTX) for breast, colorectal or haematological cancer will be recruited from multiple sites across five 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 at enrolment, after each of their CTX cycles (up to a maximum of six 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, 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: Ethical approval will be obtained prior to the implementation of all major study amendments. Applications will be submitted to all of the ethics committees that granted initial approval.eSMART received approval from the relevant ethics committees at all of the clinical sites across the five 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; establishment of an eSMART website (www.esmartproject.eu) with publicly accessible general information; creation of an eSMART Twitter Handle, and production of a toolkit for implementing/utilising the ASyMS technology in a variety of clinical practices and other transferable health care contexts. TRIAL REGISTRATION NUMBER: NCT02356081.

The assessment and management of chemotherapy-related toxicities in patients with breast cancer, colorectal cancer, and Hodgkin's and non-Hodgkin's lymphomas: A scoping review.

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.

Patient-Reported Self-Efficacy, Anxiety, and Health-Related Quality of Life During Chemotherapy: Results From a Longitudinal Study.

PURPOSE/OBJECTIVES: To explore changes over time in self-efficacy and the predictive ability of changes in state anxiety and health-related quality of life during chemotherapy.
. DESIGN: Secondary analysis of a longitudinal dataset derived from a larger, multicenter study.
. SETTING: Outpatient oncology clinics across eight general hospitals in England, Scotland, and Northern Ireland.
. SAMPLE: 137 patients scheduled to receive adjuvant chemotherapy for breast or colorectal cancer.
. METHODS: At the beginning of each of six chemotherapy cycles, participants completed the Strategies Used by People to Promote Health questionnaire, the State-Trait Anxiety Inventory, and the Functional Assessment of Cancer Therapy-Breast or -Colorectal questionnaire. Multilevel model analysis was used to analyze longitudinal data, adjusted for demographic and clinical variables.
. MAIN RESEARCH VARIABLES: Self-efficacy, anxiety, and health-related quality of life.
. FINDINGS: No significant time effects were found for patients' overall perceived self-efficacy or self-efficacy parameters. A trend toward greater self-efficacy was evident as chemotherapy progressed. Self-efficacy was significantly associated with decreased state anxiety throughout chemotherapy. Increases in overall self-efficacy and perceived ability to maintain a positive attitude were significantly associated with over-time increases in physical, emotional, and functional well-being, as well as with fewer cancer-related concerns.
. CONCLUSIONS: Findings highlight the importance of clinical assessments throughout treatment that focus on patients' perceived self-efficacy as a positive regulator of mood and well-being. 
. IMPLICATIONS FOR NURSING: The current study suggests self-efficacy enhancement should be a key component of psycho-behavioral programs designed to support patients with cancer throughout chemotherapy.

Trajectories and predictors of state and trait anxiety in patients receiving chemotherapy for breast and colorectal cancer: Results from a longitudinal study.

PURPOSE: To examine the trajectories and predictors of state and trait anxiety in patients undergoing chemotherapy for breast or colorectal cancer. METHODS: Secondary analysis of data collected as part of a large multi-site longitudinal study. Patients with breast or colorectal cancer completed validated scales assessing their state and trait anxiety levels (State-Trait Anxiety Inventory) and symptom burden (Rotterdam Symptom Checklist) at the beginning of each chemotherapy cycle. Longitudinal mixed model analyses were performed to test changes of trait and state anxiety over time and the predictive value of symptom burden and patients' demographic (age, gender) and clinical characteristics (cancer type, stage, comorbidities, ECOG performance status). RESULTS: Data from 137 patients with breast (60%) or colorectal cancer (40%) were analysed. Linear time effects were found for both state (χ2 = 46.3 [df = 3]; p < 0.001) and trait anxiety (χ2 = 17.708 [df = 3]; p = 0.001), with anxiety levels being higher at baseline and gradually decreasing over the course of chemotherapy. Symptom burden (ß = 0.21; SD = 0.06; p = 0.001) predicted state anxiety throughout treatment, but this effect disappeared when accounting for trait anxiety scores before the start of chemotherapy (ß = 0.85; SD = 0.05; p < 0.001). Patients' baseline trait anxiety was the only significant predictor of anxiety throughout treatment. CONCLUSIONS: Changes in the generally stable characteristic of trait anxiety indicate the profoundly life-altering nature of chemotherapy. The time point before the start of chemotherapy was identified as the most anxiety-provoking, calling for interventions to be delivered as early as possible in the treatment trajectory. Patients with high trait anxiety and symptom burden may benefit from additional support.

Alterations and Interdependence in Self-Reported Sleep-Wake Parameters of Patient-Caregiver Dyads During Adjuvant Chemotherapy for Breast Cancer
.

PURPOSE/OBJECTIVES: To longitudinally explore changes, similarities, differences, and interrelations in the sleep-wake parameters of patient-caregiver dyads throughout adjuvant chemotherapy for breast cancer.
. DESIGN: Observational, repeated-measures, dyadic study.
. SETTING: Four ambulatory oncology clinics in Scotland.
. SAMPLE: 48 dyads consisting of patients and their primary informal caregivers.
. METHODS: Four dyadic, self-reported sleep-wake assessments took place before chemo-therapy (T0), during chemotherapy cycles 1 (T1) and 4 (T2), and after chemotherapy (T3). Dyads completed the Pittsburgh Sleep Quality Index. Multilevel hierarchical linear modeling was used to explore dyadic data.
. MAIN RESEARCH VARIABLES: Perceived sleep quality, sleep onset latency (SOL), total sleep time, habitual sleep efficiency, wake after sleep onset, daily disturbance, daytime napping duration, overall sleep-wake impairment.
. FINDINGS: The majority of dyads had at least one poor sleeper throughout the study; 25%-35% were dyads of concurrent poor sleepers. Curvilinear patterns of change were evident for patients' (but not caregivers') sleep-wake parameters, steadily deteriorating from pre- to midtreatment, then leveling off close to baseline. Average trajectories were significantly different between the dyad members but indicative of a trend for concurrent deterioration at T2. Dyad members' perceived sleep quality, SOL, and overall sleep-wake impairment were closely interrelated; wake variables remained uncoupled.
. CONCLUSIONS: Despite overall differences in magnitude, sleep problems may be concurrently present in both dyad members, covary, and peak midway through chemotherapy. 
. IMPLICATIONS FOR NURSING: Dyadic sleep assessments can shed light on potential areas of sleep interaction to enable interventions to support care dyads at risk of sleep distress during chemotherapy for breast cancer.

The Patient Remote Intervention and Symptom Management System (PRISMS) - a Telehealth- mediated intervention enabling real-time monitoring of chemotherapy side-effects in patients with haematological malignancies: study protocol for a randomised controlled trial.

BACKGROUND: Outpatient chemotherapy is a core treatment for haematological malignancies; however, its toxicities frequently lead to distressing/potentially life-threatening side-effects (neutropenia/infection, nausea/vomiting, mucositis, constipation/diarrhoea, fatigue). Early detection/management of side-effects is vital to improve patient outcomes, decrease morbidity and limit lengthy/costly hospital admissions. The ability to capture patient-reported health data in real-time, is regarded as the 'gold-standard' to allow rapid clinical decision-making/intervention. This paper presents the protocol for a Phase 3 multi-site randomised controlled trial evaluating a novel nurse-led Telehealth intervention for remote monitoring/management of chemotherapy side-effects in Australian haematological cancer patients. METHODS/DESIGN: Two hundred and twenty-two patients will be recruited from two hospitals. Eligibility criteria include: diagnosis of chronic lymphocytic leukaemia/Hodgkin's/non-Hodgkin's lymphoma; aged ≥ 18 years; receiving ≥ 2 cycles chemotherapy. Patients will be randomised 1:1 to either the control or intervention arm with stratification by diagnosis, chemotherapy toxicity (high versus low), receipt of previous chemotherapy and hospital. Patients allocated to the control arm will receive 'Usual Care' whilst those allocated to the intervention will receive the intervention in addition to 'Usual Care'. Intervention patients will be provided with a computer tablet and software prompting twice-daily completion of physical/emotional scales for up to four chemotherapy cycles. Should patient data exceed pre-determined limits an Email alert is delivered to the treatment team, prompting nurses to view patient data, and contact the patient to provide clinical intervention. In addition, six scheduled nursing interventions will be completed to educate/support patients in use of the software. Patient outcomes will be measured cyclically (midpoint and end of cycles) via pen-and-paper self-report alongside review of the patient medical record. The primary outcome is burden due to nausea, mucositis, constipation and fatigue. Secondary outcomes include: burden due to vomiting and diarrhoea; psychological distress; ability to self-manage health; level of cancer information/support needs and; utilisation of health services. Analyses will be intention-to-treat. A cost-effectiveness analysis is planned. DISCUSSION: This trial is the first in the world to test a remote monitoring/management intervention for adult haematological cancer patients receiving chemotherapy. Future use of such interventions have the potential to improve patient outcomes/safety and decrease health care costs by enabling early detection/clinical intervention. TRIAL REGISTRATION: ACTRN12614000516684 . Date registered: 12 March 2014 (registered retrospectively).

Development of a novel remote patient monitoring system: the advanced symptom management system for radiotherapy to improve the symptom experience of patients with lung cancer receiving radiotherapy.

BACKGROUND: The use of technology-enhanced patient-reported outcome measures to monitor the symptoms experienced by people with cancer is an effective way to offer timely care. OBJECTIVE: This study aimed to (a) explore the feasibility and acceptability of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy and clinicians involved in their care and (b) assess changes in patient outcomes during implementation of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy in clinical practice. METHODS: A repeated-measures, single-arm, mixed-methods study design was used involving poststudy interviews and completion of patient-reported outcome measures at baseline and end of treatment with 16 patients with lung cancer and 13 clinicians who used this mobile phone-based symptom monitoring system. RESULTS: Only rarely did patients report problems in using the handset and they felt that the system covered all relevant symptoms and helped them to manage their symptoms and effectively communicate with clinicians. Clinical improvements in patient anxiety, drowsiness, and self-care self-efficacy were also observed. Clinicians perceived the use of "real-time" risk algorithms and automated self-care advice provided to patients as positively contributing to clinical care. Reducing the complexity of the system was seen as important to promote its utility. CONCLUSIONS: Although preliminary, these results suggest that monitoring patient symptoms using mobile technology in the context of radiotherapy for lung cancer is feasible and acceptable in clinical practice. IMPLICATIONS FOR PRACTICE: Future research would be most beneficial if the use of this technology was focused on the postradiotherapy phase and expanded the scope of the system to encompass a wider range of supportive care needs.

What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials.

PURPOSE: The systematic use of patient-reported outcome measures (PROMs) has been advocated as an effective way to standardize cancer practice. Yet, the question of whether PROMs can lead to actual improvements in the quality of patient care remains under debate. This review examined whether inclusion of PROM in routine clinical practice is associated with improvements in patient outcomes, processes of care, and health service outcomes during active anticancer treatment. METHODS: A systematic review of five electronic databases (Medline, EMBASE, CINAHL [Cumulative Index to Nursing and Allied Health Literature], PsycINFO, and Psychology and Behavioral Sciences Collection [PBSC]) was conducted from database inception to May 2012 to locate randomized and nonrandomized controlled trials of patients receiving active anticancer treatment or supportive care irrespective of type of cancer. RESULTS: Based on prespecified eligibility criteria, we included 26 articles that reported on 24 unique controlled trials. Wide variability in the design and use of interventions delivered, outcomes evaluated, and cancer- and modality-specific context was apparent. Health service outcomes were only scarcely included as end points. Overall, the number of statistically significant findings were limited and PROMs' intervention effect sizes were predominantly small-to-moderate. CONCLUSION: The routine use of PROMs increases the frequency of discussion of patient outcomes during consultations. In some studies, PROMs are associated with improved symptom control, increased supportive care measures, and patient satisfaction. Additional effort is required to ensure patient adherence, as well as additional support to clinicians who will respond to patient concerns and issues, with clear system guidelines in place to guide their responses. More research is required to support PROM cost-benefit in terms of patient safety, clinician burden, and health services usage.

An Interpretative Phenomenological Analysis of the lived experience of multiple concurrent symptoms in patients with lung cancer: a contribution to the study of symptom clusters.

PURPOSE OF THE RESEARCH: To explore the lived experience of multiple concurrent symptoms in people with advanced lung cancer to contribute to the understanding of the experience of symptom clusters. METHODS AND SAMPLE: Purposive sampling recruited ten people with advanced lung cancer who were experiencing three or more concurrent symptoms, were at least 18 years of age and were able to provide written informed consent. The participants took part in two consecutive, in-depth interviews, 3-5 weeks apart. Interpretative Phenomenological Analysis was used to analyse the data. FINDINGS: Participants experienced 4-11 concurrent symptoms with fatigue, cough, pain and breathlessness featuring prominently in their interviews. The participants commonly identified associations between the symptoms that they experienced, with the occurrence of one symptom often used to explain the occurrence of another. Reductions in physical and social functioning were often associated with the experience of multiple concurrent symptoms, particularly at times of high symptom severity. The participants' highlighted breathlessness and cough as being of particular salience, due to the association of these symptoms with fear of death and visibility and embarrassment in public. CONCLUSIONS: People with lung cancer experience multiple concurrent symptoms and perceive relationships between the symptoms experienced. Within the experience of multiple symptoms, people with lung cancer highlight individual symptoms that are of particular importance, based on their concomitant meanings. Such findings provide vital information for the future development of meaning-based symptom cluster interventions.

Exercise intervention for patients surgically treated for Non-Small Cell Lung Cancer (NSCLC): a systematic review.

BACKGROUND: Surgery remains the best curative option for appropriately selected patients with lung cancer. Evidence suggests that improving cardiovascular fitness and functional capacity can accelerate post-surgery recovery and reduce mortality. However, the effect of exercise intervention for patients surgically treated for Non-Small Cell Lung Cancer [NCSLC] has not been fully examined. PURPOSE: This review examines the literature regarding exercise intervention for patients who are surgically treated for NSCLC focussing on three key areas: methodological quality, intervention design (e.g. duration, frequency, type) and outcomes measured. METHODS: A search of Medline, EMBASE, CINAHL and PsychINFO was undertaken. Randomised Controlled Trials [RCTs] and non-RCTs including exercise training pre or post lung cancer resection were included. Descriptive characteristics were extracted and methodological quality assessed using Downs and Black appraisal checklist. RESULTS: Twenty studies (eight RCT's) were included: nine pre-surgical, nine post-surgical and two pre to post-surgical. The quality of evidence is questionable with many limitations (e.g. small samples, inadequate allocation concealment and a lack of clear reporting on timing, adverse events and follow-up). Regarding design of exercise intervention and outcomes measured, there was much variation between studies producing a disparate set of data. An optimal programme is still to be determined; however, suggestions are made relating to type of exercise (i.e. mixing aerobic, resistance and breathing exercises). Preliminary work from this review suggests that exercise intervention compared with usual care both pre and post-surgery is associated with improved cardiopulmonary exercise capacity, increased muscle strength and reduced fatigue, post-operative complications and hospital length of stay. Results concerning pulmonary function, quality of life, and blood gas analysis were variable and inconsistent. CONCLUSION: In order to implement exercise intervention appropriate for patients surgically treated for NCSLC, more high quality randomised controlled trials are required and more work concerning feasibility, acceptability and effectiveness of specific interventions on outcomes is warranted.

"It's just going to a new hospital that's it." Or is it? An experiential perspective on moving from pediatric to adult cancer services.

BACKGROUND: Survivors of childhood cancer will, at some stage, move from pediatric to adult care and/or to a different model of care to continue to receive long-term follow-up. Literature relating to transitional care for childhood onset conditions exists, but little research has been undertaken into transition in a cancer context, specifically from an experiences perspective. OBJECTIVE: The aim of this study was to report how the process of transition should be considered within the context of young people's entire illness experience and how that experience can impact their transition readiness. INTERVENTION/METHODS: A qualitative, collective case study approach was adopted. Semistructured interviews were conducted with young people, parents, and healthcare professionals. Young people's oncology case notes were also reviewed. RESULTS: Data analysis generated a multidimensional and multiple-perspective understanding of the experience of the process of transition. A central orienting theme was identified: the experience of readiness in the context of transition. CONCLUSIONS: Understanding the multifaceted components of readiness is crucial; readiness should embody people's illness experiences, the numerous and associated losses intertwined with a move from pediatric to adult care, and the simultaneous developmental changes occurring in people's lives. IMPLICATIONS FOR PRACTICE: The findings provide a meaningful framework to understand the experience of transition from the perspective of young people, parents, and healthcare professionals. These findings could help with the planning and preparation of individualized transitional care pathways for survivors of childhood cancer.

Constructing identities in the media: newspaper coverage analysis of a major UK Clostridium difficile outbreak.

AIM: To examine how a major Clostridium difficile outbreak in the UK was represented in the media. BACKGROUND: Clostridium difficile is a serious health care-associated infection with significant global prevalence. As major outbreaks have continued to occur worldwide over the last few decades, it has also resulted in increasing media coverage. Newspaper journalists are, however, frequently criticized for sensationalized and inaccurate reporting and alarming the public. Despite such criticisms, nothing is known about how the media frame Clostridium difficile related coverage. DESIGN: Qualitative interpretive descriptive study. METHOD: An interpretive analysis of newspaper articles from the national press that reported about the outbreak from the first day of coverage over 3 weeks (12 June-3 July 2008). FINDINGS: Twenty-eight newspaper articles were included in the study from tabloids, broadsheets, a regional and a Sunday newspaper. Monster and war metaphors were frequently adopted to portray the severity of Clostridium difficile and the impact it can have on patient safety. In addition, the positioning of the affected patients, their families, healthcare professionals and the Government produced representations of victims, villains and heroes. This subsequently evoked notions of vulnerability, blame and conflict. CONCLUSION: The media are and will remain critical convectors of public information and, as such, are hugely influential in risk perceptions and responses. Rather than simply dismissing media coverage, further understanding around how such stories in specific contexts are constructed and represented is needed so that it can help inform future communication and management strategies.

Understanding factors that impact on health care professionals' risk perceptions and responses toward Clostridium difficile and meticillin-resistant Staphylococcus aureus: a structured literature review.

BACKGROUND: Clostridium difficile is the most common health care-associated infection. Despite considerable efforts to prevent and manage C difficile, poor clinical practice and nonadherence to policy continues to compromise patient safety. Risk perception research is essential in gaining understanding about how health care professionals respond. METHODS: A structured literature review examined empirical evidence regarding health care professionals' risk perceptions and responses toward C difficile. Because of limited evidence available, the review was extended to include other health care-associated infections. Only studies related to methicillin-resistant Staphylococcus aureus (MRSA) could be identified. RESULTS: Eleven studies were included. Four were specific to C difficile and 7 to MRSA. All studies found that technical understanding of C difficile was poor and that staff were concerned about risks to patients and themselves. Technical understanding for MRSA, however, was good, and staff were less concerned about their own health. Information provision was perceived to be inadequate and untrustworthy, which included the media. Practice in most studies was poor. CONCLUSION: There is a need to build on the efforts of risk perception research from other disciplines to understand how health care professionals think and make decisions about C difficile. This can help inform the development of effective management and communication strategies to maximize the quality of care provided.

Understanding factors that impact on public and patient's risk perceptions and responses toward Clostridium difficile and other health care-associated infections: a structured literature review.

BACKGROUND: Clostridium difficile is the most common health care-associated infection and a major cause of death and increased morbidity. It is vital that patients and the public are provided with the right information and communication to assist them to understand their role in preventative measures. Successful implementation of communication and management strategies hinges on individuals' risk perceptions. METHODS: We performed a structured literature review to examine the evidence regarding public and patients' risk perceptions and responses toward Clostridium difficile and other health care-associated infections. Fourteen studies were included. RESULTS: Only 1 study was specific to Clostridium difficile, and 7 were related to other health care-associated infections. Many reported limited understanding of the technical issues of the infection, concerns of transmission to family and friends, inadequate information available, and distrust. The media were one of the main sources of information. Both emotional and physical responses highlighted the level of confusion, fear, anxiety, and anger. CONCLUSION: Empirical research of risk perceptions toward Clostridium difficile is limited. Without well-researched studies examining risk perceptions and responses, there is a danger of developing and implementing communication and management strategies that do not meet the needs of our patients or the public.

Sleep and sleep-wake disturbances in care recipient-caregiver dyads in the context of a chronic illness: a critical review of the literature.

CONTEXT: Alterations in sleep-wake patterns of care recipients and their informal caregivers are common in the context of a chronic illness. Given the current notion that sleep may be regulated within and affected by close human relationships, concurrent and interrelated sleep problems may be present in care recipient-caregiver dyads. OBJECTIVES: To critically analyze evidence regarding concurrent sleep patterns or changes in care recipient-caregiver dyads in the context of a chronic illness and address methodological and research gaps. METHODS: Using a wide range of key terms and synonyms, three electronic databases (Medline, CINAHL, and Embase) were systematically searched for the period between January 1990 and July 2011. RESULTS: Ten studies met prespecified selection criteria and were included for analysis. Study quality was fair to good on average. Seven studies were conducted in the context of dementia or Parkinson's disease, two in the context of cancer, and one study included a group of community elders with mixed related comorbidities and their informal caregivers. Bidirectional associations in the sleep of care recipient-caregiver dyads seem to exist. Concurrent and comparable nocturnal sleep disruptions also may be evident. Yet, inconsistencies in the methods implemented, and the samples included, as well as uncertainty regarding factors coaffecting sleep, still preclude safe conclusions to be drawn on. CONCLUSION: The dyadic investigation of sleep is a promising approach to the development of truly effective interventions to improve sleep quality of care recipients and their caregivers. Nevertheless, more systematic, longitudinal dyadic research is warranted to augment our understanding of co-occurrence and over time changes of sleep problems in care recipient-caregiver dyads, as well as to clarify covariates/factors that appear to contribute to these problems within the dyad and across time and context of illness.

Sleep patterns and sleep-impairing factors of persons providing informal care for people with cancer: a critical review of the literature.

BACKGROUND: Sleep is increasingly recognized as an area of functioning that may be greatly affected in persons who are practically and emotionally involved in the care of patients with cancer. Clinician awareness is required to ensure that effective care for informal caregivers with sleep problems is provided. OBJECTIVE: A 2-fold critical review of the published literature was conducted, which aimed at summarizing and critically analyzing evidence regarding sleep patterns of informal caregivers of adults with cancer and contributing factors to sleep-wake disturbances. METHODS: Using a wide range of key terms and synonyms, 3 electronic databases (MEDLINE, CINAHL, EMBASE) were systematically searched for the period between January 1990 and July 2011. RESULTS: Based on prespecified selection criteria, 44 articles were pooled to provide evidence on sleep-impairing factors in the context of informal caregiving, 17 of which specifically addressed sleep patterns of caregivers of people with cancer. CONCLUSIONS: At least 4 of 10 caregivers may report at least 1 sleep problem. Short sleep duration, nocturnal awakenings, wakefulness after sleep onset, and daytime dysfunction seem to be the areas most affected irrespective of stage or type of disease, yet circadian activity remains understudied. In addition, despite a wide spectrum of potential sleep-impairing factors, underlying causal pathways are yet to be explored. IMPLICATIONS FOR PRACTICE: More longitudinal, mixed-methods, and comparison studies are warranted to explore caregiver sleep disorders in relation to the gravity of the caregiving situation in the context of diverse types of cancer and disease severity.