Patients with cardiovascular disease and their partners expect health care providers to provide sexual counseling to assist them in maintaining sexual quality of life. Evidence suggests however, that there is a gap in integrating evidence into practice and that relatively few cardiac patients receive sexual counseling. This can result in negative psychological, physical, and quality of life outcomes for couples who may needlessly decide sexual activity is too risky and cease all sexual activity. Two scientific statements now exist that provide ample guidance to health care providers in discussing this important topic. Using a team approach that includes physicians, nurses, physical therapists, rehabilitation staff, and others is important to ensure that sexual counseling occurs throughout recovery. In addition, several trials using interventional approaches for sexual counseling provide insight into successful approaches for sexual counseling in practice. This article provides practical strategies and evidence-based approaches for assessment and sexual counseling for all cardiac patients and their partners, and specific counseling for those with ischemic conditions, heart failure, and implanted devices.
Aims There are indications that economic crises can affect public health. The aim of this study was to describe characteristics, health status, and socio-economic status of outpatient heart failure (HF) patients several years after a national economic crisis and to assess whether socio-economic factors were associated with patient-reported outcome measures (PROMs). Methods and results In this cross-sectional survey, PROMs were measured with seven validated instruments, as follows: self-care (the 12-item European Heart Failure Self-Care Behaviour scale), HF-related knowledge (Dutch Heart Failure Knowledge Scale), symptoms (Edmonton Symptom Assessment System), sense of security (Sense of Security in Care-Patients evaluation), health status (EQ-5D visual analogue scale), health-related quality of life (HRQoL) (Kansas City Cardiomyopathy Questionnaire), and anxiety and depression (Hospital Anxiety and Depression Scale). Additional data were collected on access and use of health care, household income, demographics, and clinical status. The patients (n = 124, mean age 73 +/- 14.9, 69% male) self-care was low for exercising (53%) and weight monitoring (50%) but optimal for taking medication (100%). HF-specific knowledge was high (correct answers 12 out of 15), but only 38% knew what to do when symptoms worsened suddenly. Patients sense of security was high (amp;gt;70% had a mean score of 5 or 6, scale 1-6). The most common symptom was tiredness (82%); 12% reported symptoms of anxiety, and 18% had symptoms of depression. Patients rated their overall health (EQ-5D) on average at 65.5 (scale 0-100), and 33% had poor or very bad HRQoL. The monthly income per household was amp;lt;sic3900 for 84% of the patients. A total of 22% had difficulties making appointments with a general practitioner (GP), and 5% had no GP. On average, patients paid for six health care-related items, and amp;gt;90% paid for medications, primary care, and visits to hospital and private clinics out of their own pocket. The cost of health care had changed for 71% of the patients since the 2008 economic crisis, and increased out-of-pocket costs were most often explained by a greater need for health care services and medication expenses. There was no significant difference in PROMs related to changes in out-of-pocket expenses after the crisis, income, or whether patients lived alone or with others. Conclusions This Icelandic patient population reported similar health-related outcomes as have been previously reported in international studies. This study indicates that even after a financial crisis, most of the patients have managed to prioritize and protect their health even though a large proportion of patients have a low income, use many health care resources, and have insufficient access to care. It is imperative that access and affordable health care services are secured for this vulnerable patient population. ; Funding Agencies|Landspitali University Hospital Research Fund, Landspitali, National University Hospital of Iceland; Icelandic Nurses Association Research Fund; Maria Finnsdottir Research Fund; Heart Failure Association of the ESC Nursing Training Fellowship
Background: The period after hospitalization due to deteriorated heart failure (HF) is characterized as a time of high generalized risk. The transition from hospital to home is often problematic due to insufficient coordination of care, leading to a fragmentation of care rather than a seamless continuum of care. The aim was to describe health and community care utilization prior to and 30 days after hospitalization, and the continuity of care in patients hospitalized due to de novo or deteriorated HF from the patients perspective and from a medical chart review. Methods: This was a cross-sectional study with consecutive inclusion of patients hospitalized at a county hospital in Sweden due to deteriorated HF during 2014. Data were collected by structured telephone interviews and medical chart review and analyzed with the Spearmans rank correlation coefficient and Chi square. A P value of 0. 05 was considered significant. Results: A total of 121 patients were included in the study, mean age 82.5 (+/- 6.8) and 49% were women. Half of the patients had not visited any health care facility during the month prior to the index hospital admission, and 79% of the patients visited the emergency room (ER) without a referral. Among these elderly patients, a total of 40% received assistance at home prior to hospitalization and 52% after discharge. A total of 86% received written discharge information, one third felt insecure after hospitalization and lacked knowledge of which health care provider to consult with and contact in the event of deterioration or complications. Health care utilization increased significantly after hospitalization. Conclusion: Most patients had not visited any health care facility within 30 days before hospitalization. Health care utilization increased significantly after hospitalization. Flaws in the continuity of care were found; even though most patients received written information at discharge, one third of the patients lacked knowledge about which health care provider to contact in the event of deterioration and felt insecure at home after discharge. ; Funding Agencies|Linkoping University; Sormland County Council
Purpose: To describe what knowledge heart failure patients expect to acquire in relation to their upcoming cardiac resynchronization therapy (CRT) device implantation, to describe their self-care and health complaints, and to explore the relationship between knowledge expectations and self-care, health complaints, and background factors. Patients and methods: Cross-sectional multicenter study with 104 patients scheduled for a first-time, elective CRT implantation in Swedish and Icelandic hospitals. Data were collected with the Knowledge Expectations of hospital patient Scale, European Heart Failure Self-care Behavior Scale, and Adjusted Postoperative Recovery Profile. Results: Patients expected most knowledge related to their disease and its treatment (median 4.0, interquartile range 0.13) and least on social issues (median 3.5, interquartile range 0.83). Their self-care was average (standardized mean 51.0 +/- 19.6) before the procedure. Patients had on average 8.2 (+/- 4.7) health complaints and rated fatigue and sexual problems as the most severe. Age was independently associated with knowledge expectations (Exp beta 0.049, P= 0.033). Conclusion: Heart failure patients waiting for a CRT device implantation have high expectations for multiple aspects of knowledge, including self-care issues, before their procedure. These expectations are similar to those of other surgical patients and they increase with age. ; Funding Agencies|Landspitali University Hospital Research Fund, Landspitali - The National University Hospital of Iceland; Icelandic Nurses Association Research Fund; Ingibjorg Magnusdottir in Iceland; Medtronic-Vingmed AB; St. Jude Medical Sweden AB in Sweden
Background: Adherence to recommendations for physical activity is low in both male and female patients with heart failure (HF). Men are more physically active than women. In order to successfully promote physical activity, it is therefore essential to explore how much and why HF patients are physically active and if this is related to sex. The aim of this study was therefore to evaluate physical activity in HF patients, to describe the factors related to physical activity, and to examine potential barriers and motivations to physical activity with special focus on sex differences. Methods: The study had a cross-sectional survey design. HF patients living at home received a questionnaire during May-July 2014, with questions on physical activity (from the Short Form-International Physical Activity Questionnaire), and potential barriers and motivations to physical activity. Results: A total of 154 HF patients, 27% women, with a mean age of 70 +/- 10 were included. In total, 23% of the patients reported a high level of physical activity, 46% a moderate level, and 34% a low level. Higher education, self-efficacy, and motivation were significantly associated with a higher amount of physical activity. Symptoms or severity of the disease were not related to physical activity. All the potential barriers to exercise were reported to be of importance. Psychological motivations were most frequently rated as being the most important motivation (41%) to be physically active. Physical motivations (33%) and social motivations were rated as the least important ones (22%). Women had significantly higher total motivation to be physically active. These differences were found in social, physical, and psychological motivations. Discussion: One-third of the HF patients had a low level of physical activity in their daily life. Severity of the disease or symptoms were not related, whereas level of education, exercise self-efficacy, and motivation were important factors to take into account when advising a HF patient about physical activity. Women reported higher motivation to be physically active than men, but there was no difference in the reported level of physical activity.
BACKGROUND: Spousal concordance on risk factors and lifestyle habits exists and can partly be explained by patients' and spouses' health beliefs and underuse of cardiac rehabilitation. However, there have been very few qualitative comparisons of health beliefs between patients and spouses after a cardiac event. AIM: To examine and qualitatively compare the health beliefs of patients with coronary heart disease and their spouses about lifestyle habits, 1 year after the cardiac event. DESIGN: Explorative and descriptive. METHOD: Semi-structured focus group interviews were conducted with patients (n = 14) 1 year after a cardiac event, as well as individual interviews with spouses (n = 8). The transcriptions underwent a deductive qualitative content analysis, within the framework of the Health Belief Model. FINDINGS: Patients' and spouses' health beliefs about lifestyle habits qualitatively differed in most predetermined main analytical categories of the Health Belief Model. The patients relied more on their own capacity and the healthcare system than on collaboration with their spouses who instead emphasised the importance of mutual activities to establish lifestyle habits. The spouses therefore experienced problems with different family preferences compared to the patients' wishes. Moreover, only patients believed supervised exercise was beneficial for risk reduction of coronary heart disease and they related barriers for medication to a self-healing body and a meaningless life without relatives and old habits. Patients and spouses agreed that despite the severity of illness, life was captured and that normalisation to a life as usual was possible. CONCLUSION: The patients' and spouses' qualitatively different health beliefs regarding health-related behaviours imply a new approach. Nurses and associated professionals need to follow-up patients' and spouses' in primary health care to support them in a tailored way, for example in problem-based sessions. Recognition and understanding of their different views and otherness could lead to compromises and goals to work with. ; Funding agencies: Swedish Heart and Lung Association [E103/13, E090/14]; Region Ostergotland, Sweden [LIO-433801] ; The COR-PRIM study
Background Although attention is focused on addressing the acute situation created by the COVID-19 illness, it is imperative to continue our efforts to prevent cardiovascular morbidity and mortality, particularly during a period of prolonged social isolation which may limit physical activity, adversely affect mental health and reduce access to usual care. One option may be to deliver healthcare interventions remotely through digital healthcare solutions. Therefore, the aim of this paper is to bring together the evidence for remote healthcare during a quarantine situation period to support people living with cardiovascular disease during COVID-19 isolation. Methods The PubMed, CINAHL and Google Scholar were searched using telehealth OR digital health OR mHealth OR eHealth OR mobile apps AND COVID-19 OR quarantine search terms. We also searched for literature relating to cardiovascular disease AND quarantine. Results The literature search identified 45 potentially relevant publications, out of which nine articles were included. Three overarching themes emerged from this review: (1) preparing the workforce and ensuring reimbursement for remote healthcare, (2) supporting mental and physical health and (3) supporting usual care. Conclusion To support people living with cardiovascular disease during COVID-19 isolation and to mitigate the effects of quarantine and adverse effect on mental and physical well-being, we should offer remote healthcare and provide access to their usual care.
Unplanned hospital readmissions are the most important, preventable cost in heart failure (HF) health economics. Current professional guidelines recommend that patient self-care is an important means by which to reduce this burden. Patients with HF should be engaged in their care such as by detecting. monitoring, and managing their symptoms. A variety of educational and behavioural interventions have been designed and implemented by health care providers to encourage and support patient self-care. Meta-analyses support the use of self-care interventions to improve patient self-care and reduce hospital readmissions; however, efficacy is variable. The aim of this review was to explore methods to achieve greater clarity and consistency in the development and reporting of self-care interventions to enable change agents to be identified. We conclude that advancement in this field requires more explicit integration and reporting on the behaviour change theories that inform the design of self-care interventions and the selection of behaviour change techniques. The systematic application of validated checklists, such as the Theory Coding Scheme and the CALO-RE taxonomy, will improve the systematic testing and refinement of interventions to enable change agent/s to be identified and optimised.
Background Knowledge of patient reported outcomes helps to provide personalized care on a patient level, optimize care on a population level, and identify the most appropriate patient reported outcomes for clinical trials. To be able to provide personalized care to patients with HF, it is important to know which treatment goals patients with HF consider the most important. This is particularly useful for interventions aimed at improving symptoms, functional status, or health-related quality of life. Aim: The aim of this study was (1) to explore which treatment goals patients with heart failure (HF) perceive as important for their treatment and (2) to identify which treatment goals take priority over other treatment goals. Methods: The study had a qualitative design and included one focus group interview with 6 patients with HF. Data were analyzed using qualitative content analysis. Results: The overall theme of this study was found to be Not getting worse. This theme was composed of 4 categories that described how the patients perceived the goals of treatment: to decrease symptoms, to improve physical function, to prevent readmission, and to live a normal life. None of the participants mentioned improved survival or being cured of their HF as a treatment goal. Conclusion Not getting worse was perceived as the treatment goal that matters to patients with HF and is in line with currently used endpoints for the evaluation of a treatment in a clinical trial. More research is necessary to develop endpoints that are consistent with the perception of patients, useful for clinical practice, and measurable. ; Funding Agencies|Dutch Ministry of Health, Welfare, and Sport
Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families. ; Funding Agencies|Medical Research Council of South east of Sweden [FORSS-645591]; Research and scholarship management in Region Ostergotland [LIO-656941]
Background: Self-care is an important element in the comprehensive management of patients with heart failure. The European Heart Failure Self-Care Behaviour Scale (EHFScBS) was developed and tested to measure behaviours performed by the heart failure patients to maintain life, healthy functioning, and wellbeing. Aims: The purpose of this review was to evaluate the importance of factors associated with heart failure self-care behaviours as measured by the EHFScBS. Methods: Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines were used to search major health databases (PubMed, Scopus and ScienceDirect). Obtained associating factors of heart failure self-care were qualitatively synthesised and the association levels of most commonly addressed factors were further explored. Results: We identified 30 studies that were included in the review; a diverse range of personal and environmental factors associated with self-care behaviours in heart failure patients were identified. Age, health-related quality of life, gender, education, New York Heart Association class, depressive symptoms and left ventricular ejection fraction were most often correlated with the EHFScBS score. Consistent evidence for the relationship between self-care behaviours and depression was found, while their association with New York Heart Association class and health-related quality of life was non-significant in most of the studies. Associations with other factors were shown to be inconsistent or need to be further investigated as they were only addressed in single studies. Conclusion: A sufficient body of evidence is available only for a few factors related to heart failure self-care measured by the EHFScBS and indicates their limited impact on patient heart failure self-care. The study highlights the need for further exploration of relationships that would offer a more comprehensive understanding of associating factors. ; Funding Agencies|Slovenian Research Agency [J3-7405]
Background: Self-care is important in chronic diseases such as heart failure. The cultural background of health care providers might influence their view on self-care behaviour and education they provide. The aim of this study was to describe health care providers perceptions of the role of culture in self-care and how those perceptions shape their experiences and their practices. Methods: A qualitative study was performed in Israel, a country with a culturally diverse population. Data were collected using semi-structured interviews with 12 healthcare providers from different cultural backgrounds. Interviews were recorded and transcribed verbatim and analysed using content analysis. Results: Healthcare providers experienced cultural background influenced their patients self-care behaviour. Perceived culture-specific barriers to self-care such as dietary traditions interfering with the recommended diet, willingness to undertake self-care and beliefs conflicting with medical treatment were identified. Healthcare providers described that they adapted patient education and care based on the cultural background of the patients. Shared cultural background, awareness and knowledge of differences were described as positively influencing self-care education, while cultural differences could complicate this process. Conclusions: Cultural-specific barriers for self-care were perceived by health care providers and they identified that their own cultural background shapes their experiences and their practices.
BACKGROUND: Decreased appetite can contribute to malnutrition in patients with heart failure (HF). Little is known about the trajectory of appetite over time in patients with HF and the factors associated with decreased appetite after discharge from the hospital. OBJECTIVE: The aims of this study were to investigate changes in appetite over time and explore how fatigue, depressive symptoms, and quality of life are associated with decreased appetite. METHODS: Data from the multicenter randomized Coordinating study evaluating Outcomes of Advising and Counseling in Heart Failure were used. Logistic regression and mixed-effects logistic regression were used to investigate changes in appetite over time and to explore the relationship between appetite and fatigue, depressive symptoms, and quality of life. RESULTS: A total of 734 patients with HF (mean age, 69 years) were included. Decreased appetite was present at all follow-up measurements; however, decreased appetite was significantly lower at the 1-month (odds ratio [OR], 0.43; confidence interval [CI], 0.29-0.63), 6-month (OR, 0.31; CI, 0.20-0.47), 12-month (OR, 0.22; CI, 0.14-0.34), and 18-month (OR, 0.24; CI, 0.15-0.37) follow-ups compared with baseline. Decreased appetite was associated with fatigue (OR, 3.09; CI, 1.98-4.84), depressive symptoms (OR, 1.76; CI, 1.35-2.29), and low quality of life (OR, 1.01; CI, 1.01-1.02) across all measurement points adjusted for covariates. CONCLUSIONS: Appetite improved after discharge; however, at all time points, at least 22% of patients reported decreased appetite. Fatigue, depressive symptoms, and low quality of life are factors associated with decreased appetite. Decreased appetite is a long-standing problem in that it does not disappear spontaneously after an acute HF deterioration. ; Funding: Netherlands Heart FoundationNetherlands Heart Foundation [2000Z003]; Biosite France SAS; Jouy-en-Josas, France (brain natriuretic peptide); Roche Diagnostics Nederland BV, Venlo, the Netherlands; Novartis Pharma BV, Arnhem, the NetherlandsNetherlands Government
Background and objective: The number of studies in the area of self-care is growing and international researchers are increasingly developing self-care interventions to improve outcomes of individual patients and communities. However, growth of the evidence is still slow due to challenges with designing and testing self-care interventions. In this article we address major methodological challenges with regard to the definition of self-care, use of theory, and research design, intended to provide guidance to researchers in this field. Method: During the inaugural conference of the International Center for Self-Care Research held in Rome, Italy in June 2019 we identified important issues in existing self-care research. Discussion and literature review lead to eight recommendation for future self-care research. Results: In preparation, begin with a theoretically sound definition of self-care. In planning the intervention, build on and extend previous studies. Use theory to develop self-care interventions and consider translational models to guide development, evaluation and implementation of complex self-care interventions. Employ a study design that fits the current phase and objectives of the research and measure self-care and related factors carefully. In reporting, describe the sample and setting sufficiently so that others can draw conclusions about generalizability and applicability to their practice and patient population. In interpretation, describe how the intervention is assumed to work (causal assumptions) and its key components. Conclusion: Our review of existing self-care research clearly illustrates that the recommendations we provide are needed if we are to substantially grow the evidence base supporting self-care. Embracing a core set of principles will allow us to build on each others work. Tweetable abstract: A core set of methodological principles is needed to substantially grow the evidence base supporting self-care. (C) 2020 The Authors. Published by Elsevier Ltd. ; Funding Agencies|Australian Catholic University; National Institutes of Health/National Institute for Nursing Research (NINR) [R01NR018196]; Swedish National Science Council/Swedish Research Council for Health, Working Life and Welfare (VR-FORTE); Center of Excellence for Nursing Scholarship
Aims In patients with heart failure (HF), hospitalization rates are increasing, particularly for non-HF causes and over half may be avoidable. Self-monitoring of symptoms plays a key part in the early identification of deterioration. Our objective was to develop expert consensus for a core outcome set (COS) of symptoms to be monitored by patients, using validated single-item patient-reported outcome measures (PROMs), focused on the key priority of reducing admissions in HF. Methods and results A rigorous COS development process incorporating systematic review, modified e-Delphi and nominal group technique (NGT) methods. Participants included 24 HF patients, 4 carers, 29 HF nurses, and 9 doctors. In three Delphi and NGT rounds, participants rated potential outcomes on their importance before a HF or a non-HF admission using a 5-point Likert scale. Opinion change between rounds was assessed and a two-thirds threshold was used for outcome selection. Item generation using systematic review identified 100 validated single-item PROMs covering 34 symptoms or signs, relevant to admission for people with HF. De-duplication and formal consensus processes, resulted in a COS comprising eight symptoms and signs; shortness of breath, arm or leg swelling, abdomen bloating, palpitations, weight gain, chest pain, anxiety, and overall health. In the NGT, a numerical rating scale was selected as the optimal approach to symptom monitoring. Conclusion Recognition of a range of HF-specific and general symptoms, alongside comorbidities, is an important consideration for admission prevention. Further work is needed to validate and integrate the COS in routine care with the aim of facilitating faster identification of clinical deterioration. [GRAPHICS] . ; Funding Agencies|National Institute for Health ResearchNational Institute for Health Research (NIHR) [NIHR-300111]
