Placing patient-reported outcomes at the centre of cardiovascular clinical practice: implications for quality of care and management.

Patient-reported outcomes (PROs) provide important insights into patients' own perspectives about their health and medical condition, and there is evidence that their use can lead to improvements in the quality of care and to better-informed clinical decisions. Their application in cardiovascular populations has grown over the past decades. This statement describes what PROs are, and it provides an inventory of disease-specific and domain-specific PROs that have been developed for cardiovascular populations. International standards and quality indices have been published, which can guide the selection of PROs for clinical practice and in clinical trials and research; patients as well as experts in psychometrics should be involved in choosing which are most appropriate. Collaborations are needed to define criteria for using PROs to guide regulatory decisions, and the utility of PROs for comparing and monitoring the quality of care and for allocating resources should be evaluated. New sources for recording PROs include wearable digital health devices, medical registries, and electronic health record. Advice is given for the optimal use of PROs in shared clinical decision-making in cardiovascular medicine, and concerning future directions for their wider application.

Challenges in heart failure care in four European countries: a comparative study.

BACKGROUND: In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. METHODS: A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. RESULTS: The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. CONCLUSION: Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills.

Trusting relationships between patients with non-curative cancer and healthcare professionals create ethical obstacles for informed consent in clinical trials: a grounded theory study.

BACKGROUND: Clinical trial participation for patients with non-curative cancer is unlikely to present personal clinical benefit, which raises the bar for informed consent. Previous work demonstrates that decisions by patients in this setting are made within a 'trusting relationship' with healthcare professionals. The current study aimed to further illuminate the nuances of this relationship from both the patients' and healthcare professionals' perspectives. METHODS: Face-to-face interviews using a grounded theory approach were conducted at a regional Cancer Centre in the United Kingdom. Interviews were performed with 34 participants (patients with non-curative cancer, number (n) = 16; healthcare professionals involved in the consent process, n = 18). Data analysis was performed after each interview using open, selective, and theoretical coding. RESULTS: The 'Trusting relationship' with healthcare professionals underpinned patient motivation to participate, with many patients 'feeling lucky' and articulating an unrealistic hope that a clinical trial could provide a cure. Patients adopted the attitude of 'What the doctor thinks is best' and placed significant trust in healthcare professionals, focusing on mainly positive aspects of the information provided. Healthcare professionals recognised that trial information was not received neutrally by patients, with some expressing concerns that patients would consent to 'please' them. This raises the question: Within the trusting relationship between patients and healthcare professionals, 'Is it possible to provide balanced information?'. The theoretical model identified in this study is central to understanding how the trusting professional-patient relationship influences the decision-making process. CONCLUSION: The significant trust placed on healthcare professionals by patients presented an obstacle to delivering balanced trial information, with patients sometimes participating to please the 'experts'. In this high-stakes scenario, it may be pertinent to consider strategies, such as separation of the clinician-researcher roles and enabling patients to articulate their care priorities and preferences within the informed consent process. Further research is needed to expand on these ethical conundrums and ensure patient choice and autonomy in trial participation are prioritised, particularly when the patient's life is limited.

CODE-EHR best practice framework for the use of structured electronic healthcare records in clinical research.

Big data is central to new developments in global clinical science aiming to improve the lives of patients. Technological advances have led to the routine use of structured electronic healthcare records with the potential to address key gaps in clinical evidence. The covid-19 pandemic has demonstrated the potential of big data and related analytics, but also important pitfalls. Verification, validation, and data privacy, as well as the social mandate to undertake research are key challenges. The European Society of Cardiology and the BigData@Heart consortium have brought together a range of international stakeholders, including patient representatives, clinicians, scientists, regulators, journal editors and industry. We propose the CODE-EHR Minimum Standards Framework as a means to improve the design of studies, enhance transparency and develop a roadmap towards more robust and effective utilisation of healthcare data for research purposes.

High levels of risk factors and poor secondary prevention for coronary heart disease patients in public hospitals: A descriptive repeated measures study.

BACKGROUND: Secondary prevention is a priority after coronary revascularization for effective long-term cardiovascular care. Coronary Heart Disease is a major health problem in Jordan, but little is known about the current provision of secondary prevention. AIM: The aim of this study was to evaluate risk factors and explore the current provision of secondary Coronary Heart Disease prevention among patients presenting with first-time Coronary Heart Disease at two time points: during hospitalization (Time 1) and 6 months later (Time 2), in multicentre settings in Jordan. METHODS: A descriptive, repeated measures research study design was applied to a consecutive sample of 180 patients with first-time Coronary Heart Disease. Demographic and clinical details were recorded from medical files. Self-administered questionnaires developed by the researchers were used to measure secondary prevention information related to Coronary Heart Disease, including secondary prevention services, lifestyle advice received and medical advice topics. A short form of the International Physical Activity Questionnaire was used to measure physical activity. Participants were assessed at Times 1 and 2. RESULTS: Unstructured lifestyle advice given to the patients at Times 1 and 2 most frequently related to medications, smoking, diet and blood lipids control advice topics, with no statistically significant improvement in cardiovascular risk factors among patients between Times 1 and 2. CONCLUSION: Despite an extremely high prevalence of risk factors in this population, the provision of secondary prevention is poor in Jordan, which requires urgent improvement, and the contribution of nurses' to secondary prevention should be enhanced.

Exploring the prevalence, impact and experience of cardiac cachexia in patients with advanced heart failure and their caregivers: A sequential phased study.

BACKGROUND: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. AIM: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. DESIGN: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. SETTING/PARTICIPANTS: Two healthcare trusts within the United Kingdom. RESULTS: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. CONCLUSIONS: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support.

Design and implementation of an online admissions interview for selection to nursing and midwifery programmes: a partnership approach.

BACKGROUND: The recent surge in applications to nursing in the United Kingdom together with the shift towards providing virtual interviews through the use of video platforms has provided an opportunity to review selection methodologies to meet a new set of challenges. However there remains the requirement to use selection methods which are evidence-based valid and reliable even under these new challenges. METHOD: This paper reports an evaluation study of applicants to nursing and midwifery and reports on how to plan and use online interviews for in excess of 3000 applicants to two schools of nursing in Northern Ireland. Data is reported from Participants, Assessors and Administrators who were asked to complete an online evaluation using Microsoft Forms. RESULTS: A total of 1559 participants completed the questionnaire. The majority were aged 17-20. The findings provide evidence to support the validity and reliability of the online interview process. Importantly the paper reports on the design and implementation of a fully remote online interview process that involved a collaboration with two schools of nursing without compromising the rigour of the admissions process. The paper provides practical, quantitative, and qualitative reasons for concluding that the online remote selection process generated reliable data to support its use in the selection of candidates to nursing and midwifery. CONCLUSION: There are significant challenges in moving to online interviews and the paper discusses the challenges and reflects on some of the broader issues associated with selection to nursing and midwifery. The aim of the paper is to provide a platform for discussion amongst other nursing schools who might be considering major changes to their admissions processes.

Duty of care trumps utilitarianism in multi-professional obesity management decisions.

BACKGROUND: Escalating levels of obesity place enormous and growing demands on Health care provision in the (U.K.) United Kingdom. Resources are limited with increasing and competing demands upon them. Ethical considerations underpin clinical decision making generally, but there is limited evidence regarding the relationship between these variables particularly in terms of treating individuals with obesity. RESEARCH AIM: To investigate the views of National Health Service (NHS) clinicians on navigating the ethical challenges and decision making associated with obesity management in adults with chronic illness. RESEARCH DESIGN: A cross-sectional, multi-site survey distributed electronically. PARTICIPANTS: A consensus sample of nurses, doctors, dietitians and final year students in two NHS Trusts and two Universities. ETHICAL CONSIDERATIONS: Ethical and governance approvals obtained from a National Ethics Committee (11NIR035), two universities and two teaching hospitals. RESULTS: Of the total (n = 395) participants, the majority were nurses (48%), female (79%) and qualified clinicians (59%). Participants strongly considered the individual to have primary responsibility for a healthy weight and an obligation to attempt to maintain that healthy weight if they wish to access NHS care. Yet two thirds would not withhold treatment for patients with obesity. DISCUSSION: While clinicians were clear about patient responsibility and obligations, the majority prioritised their duty of care and would not invoke a utilitarian approach to decision making. This may reflect awareness of obesity as a multi-faceted entity, with responsibility for support and management shared amongst society in general. CONCLUSIONS: The attitudes of this sample of clinicians complemented the concept of the health service as being built on a principle of community, with each treated according to their need. However limited resources challenge the concept of needs-based decisions consequently societal engagement is necessary to agree a pragmatic way forward.

The changing role of patients, and nursing and medical professionals as a result of digitalization of health and heart failure care.

AIM: The aim of the study is to discuss the changing role of patients, nurses and doctors in an era of digital health and heart failure care. BACKGROUND: With a growing demand for heart failure care and a shortage of health care professionals to meet it, digital technologies offer a potential solution to overcoming these challenges. EVALUATION: In reviewing pertinent research evidence and drawing on our collective clinical and research experiences, including the co-design and development of an autonomous remote system, DoctorME, we offer some reflections and propose some practical suggestions for nurturing truly collaborative heart failure care. KEY ISSUES: Digital health offers real opportunities to deliver heart failure care, but patients and health care professionals will require digital skills training and appropriate health services technological infrastructure. CONCLUSIONS: Heart failure care is being transformed by digital technologies, and innovations such as DoctorME have profound implications for patients, nurses and doctors. These include major cultural change and health service transformation. IMPLICATIONS FOR NURSING MANAGEMENT: Nurse managers should create inclusive and supportive working environments where collaborative working and digital technologies in heart failure care are embraced. Nurse managers need to recognize, value and communicate the importance of digital health in heart failure care, ensuring that staff have appropriate digital skills training.

Patient and family involvement in escalating concerns about clinical deterioration in acute adult wards: A qualitative systematic review.

BACKGROUND: Despite international standards for recognition and response to deterioration, warning signs are not always identified by staff on acute hospital wards. Patient and family-initiated escalation of care schemes have shown some benefit in assisting early recognition, but are not widely used in many clinical practice areas. OBJECTIVES: To explore (a) patients' and relatives' experiences of acute deterioration and (b) patients', relatives' and healthcare professionals' perceptions of the barriers or facilitators to patient and family-initiated escalation of care in acute adult hospital wards. METHODS: We conducted a qualitative review using Cochrane methodology. Two reviewers independently screened studies, extracted data, and appraised the quality using a qualitative critical appraisal tool. Findings were analysed using thematic synthesis and confidence in findings was assessed using GRADE-CERQual. SEARCH STRATEGY: MEDLINE, CINAHL, EMBASE, PsychINFO databases and grey literature from 2005 to August 2019. INCLUSION CRITERIA: Any research design that had a qualitative element and focused on adult patients' and relatives' experiences of deterioration and perceptions of escalating care. RESULTS: We included five studies representing 120 participants and assessed the certainty of evidence as moderate using GRADE-CERQual. Findings indicated that a number of patients/relatives have the ability to detect acute deterioration, however, various factors act as both barriers and facilitators to being heard. These include personal factors, perceptions of role, quality of relationships with healthcare staff, and organisational factors. Theoretical understanding suggests that patient and relative involvement in escalation is dependent on both inherent capabilities and the factors that influence empowerment. CONCLUSION: This review highlights that patient and family escalation of care interventions need to be designed with the aim of improving patient/relative-clinician collaboration and the sharing of responsibility. RELEVANCE TO PRACTICE: These factors need to be addressed to promote more active partnerships when designing and implementing patient and family-initiated escalation of care interventions.

Nothing to lose: a grounded theory study of patients' and healthcare professionals' perspectives of being involved in the consent process for oncology trials with non-curative intent.

BACKGROUND: Clinical cancer research trials may offer little or no direct clinical benefit to participants where a cure is no longer possible. As such, the decision-making and consent process for patient participation is often challenging. AIM: To gain understanding of how patients make decisions regarding clinical trial participation, from the perspective of both the patient and healthcare professionals involved. METHODS: In-depth, face to face interviews using a grounded theory approach. This study was conducted in a regional Cancer Centre in the United Kingdom. Of the 36 interviews, 16 were conducted with patients with cancer that had non-curative intent and 18 with healthcare professionals involved in the consent process. RESULTS: 'Nothing to lose' was identified as the core category that underpinned all other data within the study. This highlighted the desperation articulated by participants, who asserted trial participation was the 'only hope in the room'. The decision regarding participation was taken within a 'trusting relationship' that was important to both patients and professionals. Both were united in their 'fight against cancer'. These two categories are critical in understanding the decision-making/consent process and are supported by other themes presented in the theoretical model. CONCLUSION: This study presents an important insight into the complex and ethically contentious situation of consent in clinical trials that have non-curative intent. It confirms that patients with limited options trust their doctor and frequently hold unrealistic hopes for personal benefit. It highlights a need for further research to develop a more robust and context appropriate consent process.

Co-design of a patient and family-initiated escalation of care intervention to detect and refer patient deterioration: Research protocol.

AIM: To co-design a patient and family-initiated intervention to improve the detection and escalation of patient deterioration on acute adult hospital wards in Northern Ireland and the Republic of Ireland. DESIGN: The design is a collective case study approach in an acute hospital in Northern Ireland and the Republic of Ireland using an adapted co-design approach and Medical Research Council framework guidelines. METHODS: Data will be collected from key stakeholders (patients, relatives, and healthcare professionals) using individual and focus group interviews and a review of patients' records. This will inform the development of a co-designed intervention and implementation strategy. The developed prototype will be further refined and optimized following a feedback session with stakeholders from each hospital site. This study was funded in February 2018 and Research Ethics Committee approval was granted in March 2019. DISCUSSION: This study will contribute to the growing knowledge base in relation to the interventions that improve the escalation of patient deterioration. It will also contribute to the intelligence, evidence and understanding of the role of patient and family participation in the detection and referral of clinical deterioration in acute adult hospital settings. IMPACT: There is an ongoing need to introduce systems or mechanisms in acute care hospital settings which allow patient or family members to have a greater role in escalating care when they are concerned about patient deterioration. To date there is limited evidence of rigorous studies examining this area and this study will use stakeholder engagement and involvement to co-design an intervention which will provide patients and families with a mechanism to address concerns which can be tested in practice.

Interventions to improve psychosocial well-being in female BRCA-mutation carriers following risk-reducing surgery.

BACKGROUND: Women who carry a pathogenic mutation in either a BRCA1 DNA repair associated or BRCA2 DNA repair associated (BRCA1 or BRCA2) gene have a high lifetime risk of developing breast and tubo-ovarian cancer. To manage this risk women may choose to undergo risk-reducing surgery to remove breast tissue, ovaries, and fallopian tubes. Surgery should increase survival, but can impact women's lives adversely at the psychological and psychosexual levels. Interventions to facilitate psychological adjustment and improve quality of life post risk-reducing surgery are needed. OBJECTIVES: To examine psychosocial interventions in female BRCA carriers who have undergone risk-reducing surgery and to evaluate the effectiveness of such interventions on psychological adjustment and quality of life. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) in the Cochrane Library, MEDLINE and Embase via Ovid, CINAHL, PsycINFO, Web of Science up to April 2019 and Scopus up to January 2018. We also handsearched abstracts of scientific meetings and other relevant publications. SELECTION CRITERIA: We included randomised controlled trials (RCT), non-randomised studies (NRS), prospective and retrospective cohort studies and interventional studies using baseline and postintervention analyses in female BRCA carriers who have undergone risk-reducing surgery. DATA COLLECTION AND ANALYSIS: Two review authors independently assessed eligibility studies for inclusion in the review. We used standard methodological procedures expected by Cochrane. MAIN RESULTS: We screened 4956 records from the searches, selecting 34 unique studies for full-text scrutiny, of which two met the inclusion criteria: one RCT and one NRS. The included studies assessed 113 female BRCA carriers who had risk-reducing surgery, but there was attrition, and outcome data were not available for all participants at final study assessments. We assessed the RCT as at a high risk of bias whilst the NRS did not have a control group. Our GRADE assessment of the studies was very low-certainty due to the paucity of data and methodological shortcomings of the studies. The primary outcome of quality of life was only measured in the RCT and that was specific to the menopause. Both studies reported on psychological distress and sexual function. Neither study measured body image, perhaps because this is most often associated with risk-reducing mastectomy rather than oophorectomy.The RCT (66 participants recruited with 48 followed to 12 months) assessed the short- and long-term effects of an eight-week mindfulness-based stress reduction (MBSR) training programme on quality of life, sexual functioning, and sexual distress in female BRCA carriers (n = 34) in a specialised family cancer clinic in the Netherlands compared to female BRCA carriers (n = 32) who received usual care. Measurements on the Menopause-Specific Quality of Life Questionnaire (MENQOL) showed some improvement at 3 and 12 months compared to the usual care group. At 3 months the mean MENQOL scores were 3.5 (95% confidence interval (CI) 3.0 to 3.9) and 3.8 (95% CI 3.3 to 4.2) for the MBSR and usual care groups respectively, whilst at 12 months the corresponding values were 3.6 (95% CI 3.1 to 4.0) and 3.9 (95% CI 3.5 to 4.4) (1 study; 48 participants followed up at 12 months). However, these results should be interpreted with caution due to the very low-certainty of the evidence, where a lower score is better. Other outcome measures on the Female Sexual Function Index and the Female Sexual Distress Scale showed no significant differences between the two groups. Our GRADE assessment of the evidence was very low-certainty due to the lack of blinding of participants and personnel, attrition bias and self-selection (as only one-third of eligible women chose to participate in the study) and serious imprecision due to the small sample size and wide 95% CI.The NRS comprised 37 female BRCA carriers selected from three Boston-area hospitals who had undergone a novel sexual health intervention following risk-reducing salpingo-oophorectomy (RRSO) without a history of tubo-ovarian cancer. The intervention consisted of targeted sexual-health education, body awareness and relaxation training, and mindfulness-based cognitive therapy strategies, followed by two sessions of tailored telephone counselling. This was a single-arm study without a control group. Our GRADE assessment of the evidence was very low-certainty, and as there was no comparison group in the included study, we could not estimate a relative effect. The study reported change in psychosexual adjustment from baseline to postintervention (median 2.3 months) using measures of Female Sexual Function Index (n = 34), which yielded change with a mean of 3.91, standard deviation (SD) 9.12, P = 0.018 (1 study, 34 participants; very low-certainty evidence). The Brief Symptom Inventory, Global Severity Index yielded a mean change of 3.92, SD 5.94, P < 0.001. The Sexual Self-Efficacy Scale yielded change with a mean of 12.14, SD 20.56, P < 0.001. The Sexual Knowledge Scale reported mean change of 1.08, SD 1.50, P < 0.001 (n = 36). Participant satisfaction was measured by questionnaire, and 100% participants reported that they enjoyed taking part in the psychoeducation group and felt "certain" or "very certain" that they had learned new skills to help them cope with the sexual side effects of RRSO. AUTHORS' CONCLUSIONS: The effect of psychosocial interventions on quality of life and emotional well-being in female BRCA carriers who undergo risk-reducing surgery is uncertain given the very low methodological quality in the two studies included in the review. The absence of such interventions highlights the need for partnership between researchers and clinicians in this specific area to take forward the patient-reported outcomes and develop interventions to address the psychosocial issues related to risk-reducing surgery in female BRCA carriers, particularly in this new era of genomics, where testing may become more mainstream and many more women are identified as gene carriers.

An exploration of the prevalence and experience of cardiac cachexia: protocol for a mixed methods cross-sectional study.

BACKGROUND: Cachexia is a complex and multifactorial syndrome defined as severe weight loss and muscle wasting which frequently goes unrecognised in clinical practice [1]. It is a debilitating syndrome, resulting in patients experiencing decreased quality of life and an increased risk of premature death; with cancer cachexia alone resulting in 2 million deaths per annum [2]. Most work in this field has focused on cancer cachexia, with cardiac cachexia being relatively understudied - despite its potential prevalence and impact in patients who have advanced heart failure. We report here the protocol for an exploratory study which will: 1. focus on determining the prevalence and clinical implications of cardiac cachexia within advanced heart failure patients; and 2. explore the experience of cachexia from patients' and caregivers' perspectives. METHODS: A mixed methods cross-sectional study. Phase 1: A purposive sample of 362 patients with moderate to severe heart failure from two Trusts within the United Kingdom will be assessed for known characteristics of cachexia (loss of weight, loss of muscle, muscle mass/strength, anorexia, fatigue and selected biomarkers), through basic measurements (i.e. mid-upper arm circumference) and use of three validated questionnaires; focusing on fatigue, quality of life and appetite. Phase 2: Qualitative semi-structured interviews with patients (n = 12) that meet criteria for cachexia, and their caregivers (n = 12), will explore their experience of this syndrome and its impact on daily life. Interviews will be digitally recorded and transcribed verbatim, prior to qualitative thematic and content analysis. Phase 3: Workshops with key stakeholders (patients, caregivers, healthcare professionals and policy makers) will be used to discuss study findings and identify practice implications to be tested in further research. DISCUSSION: Data collected as part of this study will allow the prevalence of cardiac cachexia in a group of patients with moderate to severe heart failure to be determined. It will also provide a unique insight into the implications and personal experience of cardiac cachexia for both patients and carers. It is hoped that robust quantitative data and rich qualitative perspectives will promote crucial clinical discussions on implications for practice, including targeted interventions to improve patients' quality of life where appropriate.

Inadequate Communication Exacerbates the Support Needs of Current and Bereaved Caregivers in Advanced Heart Failure and Impedes Shared Decision-making.

BACKGROUND: Clinicians face considerable challenges in identifying patients with advanced heart failure who experience significant symptom burden at the end of life. Often, these patients are cared for in the community by a loved one who has limited access to support from specialist services, including palliative care. AIM: The aims of this study were to explore caregivers' experience when caring for a loved one with advanced heart failure at the end of life and to identify any unmet psychosocial needs. METHODS: This article reports findings of a qualitative study, using semistructured, one-to-one interviews with current and bereaved caregivers, who participated in a larger mixed-methods study. Interviews were conducted by a trained researcher, digitally recorded, transcribed verbatim, and imported to NVivo 11 for data management and coding. Data were analyzed using thematic analysis and an inductive approach. RESULTS: The 30 interviews included 20 current caregivers and 10 bereaved caregivers. The central feature of the caregivers' experience was identified as being "a physical and emotional rollercoaster." There were 3 main themes identified: poor communication, living with uncertainty, and lack of service provision. These themes were supported by 6 subthemes: inadequate understanding of palliative care, a 24/7 physical burden, emotional burden, inability to plan, no care continuity, and dying lonely and unsupported. CONCLUSIONS: Caregivers in advanced heart failure need clearer communication regarding diagnosis and prognosis of their loved one's condition to help with the uncertainty of their situation. Improved identification of palliative care needs and more coordinated service provision are urgently required to address their physical and emotional challenges from diagnosis through bereavement.

'The importance of planning for the future': Burden and unmet needs of caregivers' in advanced heart failure: A mixed methods study.

BACKGROUND: While studies have evaluated caregiver outcomes in heart failure, the burden and support needs when caring for someone with advanced heart failure at the end of life have yet to be outlined. AIM: To identify psychosocial factors associated with caregiver burden and evaluate the support needs of caregivers in advanced heart failure. DESIGN: A sequential mixed methods study comprising two phases: (1) postal survey with advanced heart failure patients and their caregivers and (2) interviews with current and bereaved caregivers. Correlation, chi-square, t test, regression and thematic analysis were undertaken on the data. PARTICIPANTS: Advanced heart failure patients ( n = 112) and their caregivers ( n = 84) were recruited from secondary care settings across the United Kingdom and Ireland. For phase 2 interviews, current caregivers ( n = 20) were purposively recruited from phase 1, and bereaved caregivers ( n = 10) were purposively recruited via voluntary organisation, social media and email. RESULTS: More than half the caregivers (53%) had levels of distress associated with depression (Zarit Burden score >24). Caregiver depression score, preparedness for caregiving and patients' depression score predicted caregiver burden. Qualitative analysis identified an overarching theme of lack of future care planning and four subthemes: (1) seeking emotional support from someone who understands, (2) want information on prognostication, (3) lack of knowledge on how to and where to get support and (4) require knowledge on what to expect at the end of life. CONCLUSION: Caregivers have unmet needs and feel unprepared for the future. Implementation of future care planning by clinical teams should address patient and caregiver support needs and in turn alleviate caregiver burden.

Patient and Professional Factors That Impact the Perceived Likelihood and Confidence of Healthcare Professionals to Discuss Implantable Cardioverter Defibrillator Deactivation in Advanced Heart Failure: Results From an International Factorial Survey.

BACKGROUND: Rate of implantable cardioverter defibrillator (ICD) implantations is increasing in patients with advanced heart failure. Despite clear guideline recommendations, discussions addressing deactivation occur infrequently. AIM: The aim of this article is to explore patient and professional factors that impact perceived likelihood and confidence of healthcare professionals to discuss ICD deactivation. METHODS AND RESULTS: Between 2015 and 2016, an international sample of 262 healthcare professionals (65% nursing, 24% medical) completed an online factorial survey, encompassing a demographic questionnaire and clinical vignettes. Each vignette had 9 randomly manipulated and embedded patient-related factors, considered as independent variables, providing 1572 unique vignettes for analysis. These factors were determined through synthesis of a systematic literature review, a retrospective case note review, and a qualitative exploratory study. Results showed that most healthcare professionals agreed that deactivation discussions should be initiated by a cardiologist (95%, n = 255) or a specialist nurse (81%, n = 215). In terms of experience, 84% of cardiologists (n = 53) but only 30% of nurses (n = 50) had previously been involved in a deactivation decision. Healthcare professionals valued patient involvement in deactivation decisions; however, only 50% (n = 130) actively involved family members. Five of 9 clinical factors were associated with an increased likelihood to discuss deactivation including advanced age, severe heart failure, presence of malignancy, receipt of multiple ICD shocks, and more than 3 hospital admissions during the previous year. Furthermore, nationality and discipline significantly influenced likelihood and confidence in decision making. CONCLUSIONS: Guidelines recommend that healthcare professionals discuss ICD deactivation; however, practice is suboptimal with multifactorial factors impacting on decision making. The role and responsibility of nurses in discussing deactivation require clarity and improvement.

An evaluation of the effectiveness of self-management interventions for people with type 2 diabetes after an acute coronary syndrome: a systematic review.

BACKGROUND: Type 2 diabetes is highly prevalent in patients with acute coronary syndrome and impacts negatively on health outcomes and self-management. Both conditions share similar risk factors. However, there is insufficient evidence on the effectiveness of combined interventions to promote self-management behaviour for people with diabetes and cardiac problems. Identifying critical features of successful interventions will inform future integrated self-management programmes for patients with both conditions. OBJECTIVES: To assess the evidence on the effectiveness of existing interventions to promote self-management behaviour for patients presenting with acute coronary syndrome and type 2 diabetes in secondary care settings and postdischarge. DESIGN: We searched MEDLINE, PubMed, CINAHL Plus, PsycInfo, Cochrane Library and AMED for randomised controlled trials published between January 2005-December 2014. The search was performed using the following search terms of 'acute coronary syndrome', 'type 2 diabetes' and 'self-management intervention' and their substitutes combined. RESULTS: Of 4275 articles that were retrieved, only four trials met all the inclusion criteria (population, intervention, comparison and outcome) and were analysed. Overall, the results show that providing combined interventions for patients with both conditions including educational sessions supported by multimedia or telecommunication technologies was partially successful in promoting self-management behaviours. Implementation of these combined interventions during patient's hospitalisation and postdischarge was feasible. Intervention group subjects reported a significant improvement in self-efficacy, level of knowledge, glycated haemoglobin, blood pressure and fasting glucose test. However, there are many threats have been noticed around internal validity of included studies that could compromise the conclusions drawn. CONCLUSION: With limited research in this area, there was no final evidence to support effectiveness of combined interventions to promote self-management behaviour for patients with type 2 diabetes and acute coronary syndrome. Sufficiently powered, good quality, well-conducted and reported randomised controlled trials are required.

Illness perception in patients with coronary artery disease: A systematic review.

The aim of this study was to conduct a systematic review that investigates the differences in illness perception with age and gender in patients diagnosed with coronary artery disease. Previous studies show some discrepancies regarding the influence of age and gender on the specific dimensions of coronary artery disease patients' illness perception. A systematic review using a narrative synthesis process included preliminary synthesis, exploration of relationships and assessment of the robustness of the synthesis and findings was conducted. Search terms were used to identify research studies published between 1996 and December 2014 across four key databases: CINAHL, Medline, PsycINFO and Web of Science. A total of 14 studies met the inclusion criteria of the review. The review found that men had a stronger perception that their own behaviour had caused their illness than women. In addition, older patients had lower perceptions of the consequences and chronicity of their illness. This analysis concludes that some dimensions of illness perception vary according to age and gender of patients with coronary artery disease. These differences should be taken into consideration, particularly when providing health education and cardiac rehabilitation.

Patients' perception of implantable cardioverter defibrillator deactivation at the end of life.

BACKGROUND: Individualised care at the end of life requires professional understanding of the patient's perception of implantable cardioverter defibrillator deactivation. AIM: The aim was to evaluate the evidence on patients' perception of implantable cardioverter defibrillator deactivation at end of life. DESIGN: Systematic narrative review of empirical studies was published during 2008-2014. DATA SOURCES: Data were collected from six databases, citations from relevant articles and expert recommendations. RESULTS: In all, 18 studies included with collective population of n = 5810. Concept mapping highlighted three themes: (1) Diverse preferences regarding discussion and deactivation. Deactivation was rarely discussed pre-implantation, with some studies demonstrating patients' reluctance to discuss implantable cardioverter defibrillator deactivation at any stage. Two studies found the majority of patients valued such discussions. Diversity was reflected in patients' willingness to deactivate, ranging from 12% (n = 9) in Irish cohort to 79% (n = 195) in Dutch study. (2) Ethical and legal considerations were predominant in Canadian and American literature as patients wanted to contribute but felt the decision should be a doctor's responsibility. Advance directives were uncommon in Europe, and where they existed the implantable cardioverter defibrillator was not mentioned. (3) 'Living in the now' was evident as despite deteriorating symptoms many patients maintained a positive outlook and anticipated surviving more than 10 years. Several studies asserted living longer was more important than quality of life. CONCLUSION: Patients regard the implantable cardioverter defibrillator as a complex and solely beneficial device, with little insight regarding its potential impact on a peaceful death. This review confirms the need for professionals to discuss with patients and families implantable cardioverter defibrillator functionality and deactivation at appropriate opportunities.