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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.

Background: Motivation is necessary in patients with heart failure (HF) who are attempting to become more physically active but may not be sufficient to initiate physical activity. Self-efficacy might explain the relationship between motivation and physical activity., Objective: The aim of this study was to examine the role of exercise self-efficacy in the relationship between exercise motivation and physical activity in patients with HF., Methods: A total of 100 stable patients with HF (88% in New York Heart Association class II/III; mean age, 67 ± 13 years; 62% men) were studied. Self-efficacy was measured with the Exercise Self-Efficacy Scale; motivation, with the Exercise Motivation Index; and physical activity, with a self-report questionnaire. Logistic regression analyses were made to examine the mediation effect of exercise self-efficacy on the relationship between exercise motivation and physical activity., Results: Forty-two percent of the 100 patients reported engaging in less than 60 minutes per week of physical activity. Motivation predicted physical activity (b = 0.58, P < .05), but after controlling for self-efficacy, the relationship between motivation and physical activity was no longer significant (b = 0.76, P = .06), indicating full mediation., Conclusion: Motivation to be physically active is important but not sufficient. In addition to a high level of motivation to be physically active, it is important that patients with HF have a high degree of self-efficacy.

Background: The 9-item European Heart Failure Self-Care Behavior scale (EHFScB-9) is a self-reported questionnaire commonly used to capture the self-care behavior of people with heart failure (HF)., Objective: The aim of this study was to investigate the EHFScB-9's factorial structure and categorical functioning of the response scale and differential item functioning (DIF) across subpopulations in Iran., Methods: Patients with HF (n = 380; 60.5% male; mean [SD] age, 61.7 [9.1] years) participated in this study. The median (interquartile range) of the duration of their HF was 6.0 (2.4-8.8) months. Most of the participants were in New York Heart Association classification II (NYHA II, 61.8%); few of them had left ventricular ejection fraction assessment (11.3%). All participants completed the EHFScB-9. Confirmatory factor analysis was used to test the factorial structure of the EHFScB-9; Rasch analysis was used to analyze categorical functioning and DIF items across 2 characteristics (gender and NYHA)., Results: The 2-factor structure ("adherence to regimen" and "consulting behavior") of the EHFScB-9 was confirmed, and the unidimensionality of each factor was found. Categorical functioning was supported for all items. No items displayed substantial DIF across gender (DIF contrast, -0.25-0.31). Except for item 3 ("Contact doctor or nurse if legs/feet are swollen"; DIF contrast, -0.69), no items displayed substantial DIF across NYHA classes (DIF contrast, -0.40 to 0.47)., Conclusions: Despite the DIF displayed in 1 item across the NYHA classes, the EHFScB-9 demonstrated sound psychometric properties in patients with HF.

Background: In contrast to recommendations in recent guidelines, prognosis is not optimally discussed with patients with heart failure (HF). Reasons for not doing so can be related to both patient and provider characteristics., Purpose: The purpose of the study was to explore which patient- and nurse-related variables influence discussing prognosis with patients at an HF clinic., Method: Data from a previous survey on attitudes and clinical practice of HF nurses on discussing prognosis that was conducted in Sweden and the Netherlands were combined with data from a registration on topics that nurses discussed with their patients during a prespecified week at the HF clinic. Multivariable logistic regression analysis was performed to assess which variables are related to discussing prognosis., Results: A total of 275 HF nurses (mean age, 49 years) and data of 1633 patients with HF (mean age, 71 years) were included in the study. Prognosis was discussed with 42% of all patients during the visit at the HF clinic. Patients with whom prognosis was discussed were more often in New York Heart Association classes III to IV (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44-2.26). Nurses discussing prognosis reported more knowledge on the topic (OR, 1.71; 95% CI, 1.36-2.16) and discussed more topics with the patient (OR, 1.27; 95% CI, 1.21-1.32). Dutch HF nurses were more likely to discuss prognosis compared with their Swedish colleagues (OR, 1.83; 95% CI, 1.43-2.33)., Conclusions: Discussing prognosis with patients with HF by nurses at the HF clinic is related to the characteristics of patients and HF nurses. Future interventions to improve communications about prognosis therefore should have a broad approach.

Background: Self-care is important in heart failure (HF) treatment, but patients may have difficulties and be inconsistent in its performance. Inconsistencies in self-care behaviors may mirror patterns of self-care in HF patients that are worth identifying to provide interventions tailored to patients., Objectives: The aims of this study are to identify clusters of HF patients in relation to self-care behaviors and to examine and compare the profile of each HF patient cluster considering the patient's sociodemographics, clinical variables, quality of life, and hospitalizations., Methods: This was a secondary analysis of data from a cross-sectional study in which we enrolled 1192 HF patients across Italy. A cluster analysis was used to identify clusters of patients based on the European Heart Failure Self-care Behaviour Scale factor scores. Analysis of variance and χ test were used to examine the characteristics of each cluster., Results: Patients were 72.4 years old on average, and 58% were men. Four clusters of patients were identified: (1) high consistent adherence with high consulting behaviors, characterized by younger patients, with higher formal education and higher income, less clinically compromised, with the best physical and mental quality of life (QOL) and lowest hospitalization rates; (2) low consistent adherence with low consulting behaviors, characterized mainly by male patients, with lower formal education and lowest income, more clinically compromised, and worse mental QOL; (3) inconsistent adherence with low consulting behaviors, characterized by patients who were less likely to have a caregiver, with the longest illness duration, the highest number of prescribed medications, and the best mental QOL; (4) and inconsistent adherence with high consulting behaviors, characterized by patients who were mostly female, with lower formal education, worst cognitive impairment, worst physical and mental QOL, and higher hospitalization rates., Conclusion: The 4 clusters identified in this study and their associated characteristics could be used to tailor interventions aimed at improving self-care behaviors in HF patients.

Background: Thirst can be aggravated in patients with heart failure (HF), and optimization of HF medication can have positive impact on thirst., Objectives: The aims of this study were to describe changes in thirst intensity and to determine factors associated with high thirst intensity during optimization of HF medication., Methods and Results: Patients with HF (N = 66) who were referred to an HF clinic for up-titration of HF medication were included. Data were collected during the first visit to the clinic and at the end of the treatment program. Data were dichotomized by the median visual analog scale score for thirst, dividing patients into 2 groups: low thirst intensity (0-20 mm) and high thirst intensity (>20 mm on a visual analog scale of 0-100 mm). In total, 67% of the patients reported a higher thirst intensity after the HF up-titration program. There was no difference in thirst intensity between the patients who reached target doses and those who did not. Plasma urea level (odds ratio, 1.33; 95% confidence interval, 1.07-1.65) and fluid restriction (odds ratio, 6.25; 95% confidence interval, 1.90-20.5) were independently associated with high thirst intensity in patients with HF., Conclusions: Thirst intensity increased in two-thirds of the patients during a time period of optimization of HF medication. Fluid restriction and plasma urea levels were associated with high thirst intensity.

Background: Patients with heart failure (HF) often worry about resuming sexual activity and may need information. Nurses have a role in helping patients to live with the consequences of HF and can be expected to discuss patients' sexual concerns., Objective: The aims of this study were to identify whether nurses discuss consequences of HF on sexuality with patients and to explore their perceived role and barriers regarding this topic., Methods: A cross-sectional research design with a convergent parallel mixed method approach was used combining qualitative and quantitative data collected with a self-reported questionnaire., Results: Nurses in this study rarely addressed sexual issues with their patients. The nurses did not feel that discussing sexual concerns with their patients was their responsibility, and only 8% of the nurses expressed confidence to do so. The main phenomenon in discussing sexual concerns seems to be "one of silence": Neither patients nor nurses talk about sexual concerns. Factors influencing this include structural barriers, lack of knowledge and communication skills, as well as relevance of the topic and relationship to patients., Conclusion: Cardiac nurses in Germany rarely practice sexual counseling. It is a phenomenon that is silent. Education and skill-based training might hold potential to "break the silence."

Introduction: Sleep problems are common in patients with heart failure (HF) and might be associated with patient outcomes., Aims: The aim of this study was to describe the course of sleep problems in HF patients over 1 year and the association between sleep problems and rehospitalization., Methods: Data from 499 HF patients (mean age, 70 years) were used in this analysis. Sleep problems were assessed with the item "Was your sleep restless" from the Center for Epidemiological Studies Depression Scale during hospitalization for HF (baseline) and after 1 year., Results: A total of 43% of patients (n = 215) reported sleep problems at baseline, and 21% of patients (n = 105), after 1 year. Among the 215 patients with problems with sleep at baseline, 30% (n = 65) continued to have sleep problems over time. Among the 284 patients without sleep problems at baseline, 14% (n = 40) reported sleep problems after 1 year. After adjustments for potential cofounders, patients with continued sleep problems had an almost 2-fold increased risk for all-cause hospitalizations (hazard ratio, 2.1; P = .002) and cardiovascular hospitalizations (hazard ratio, 2.2; P = .004)., Conclusion: One-third of HF patients with sleep problems at discharge experienced persistent sleep problems at follow-up. Continued sleep problems were associated with all-cause and cardiovascular rehospitalizations.

Abstract Aim This paper describes the trajectory during 1 year of four patient‐reported outcomes (PROs), namely, sleep, depressive symptoms, health‐related quality of life (HrQoL), and well‐being, in patients with heart failure (HF), their relationship and the patient characteristics associated with changes in these PROs. Methods and results Data analyses of PROs from 603 patients (mean age 67 years; 29% female, 60% NYHA II) enrolled in the HF‐Wii study. On short term, between baseline and 3 months, 16% of the patients experienced continuing poor sleep, 11% had sustained depressive symptoms, 13% had consistent poor HrQoL, and 13% consistent poor well‐being. Across the entire 1‐year period only 21% of the patients had good PRO scores at all timepoints (baseline, 3, 6, and 12 months). All others had at least one low score in any of the PROs at some timepoint during the study. Over the 12 months, 17% had consistently poor sleep, 17% had sustained symptoms of depression, 15% consistently rated a poor HrQoL, and 13% poor well‐being. Different patient characteristics per PRO were associated with a poor outcomes across the 12 months. Age, education, New York Heart Association, and length of disease were related to two PRO domains and submaximal exercise capacity (6 min test), co‐morbidity, and poor physical activity to one. Conclusion In total, 79% of the patients with HF encountered problems related to sleep, depressive symptoms, HrQoL, and well‐being at least once during a 1‐year period. This underscores the need for continuous monitoring and follow‐up of patients with HF and the need for dynamic adjustments in treatment and care regularly throughout the HF trajectory.

Little is known either about either physical activity patterns, or other lifestyle-related prevention measures in heart transplantation (HTx) recipients. The history of HTx started more than 50 years ago but there are still no guidelines or position papers highlighting the features of prevention and rehabilitation after HTx. The aims of this scientific statement are (i) to explain the importance of prevention and rehabilitation after HTx, and (ii) to promote the factors (modifiable/non-modifiable) that should be addressed after HTx to improve patients’ physical capacity, quality of life and survival. All HTx team members have their role to play in the care of these patients and multidisciplinary prevention and rehabilitation programmes designed for transplant recipients. HTx recipients are clearly not healthy disease-free subjects yet they also significantly differ from heart failure patients or those who are supported with mechanical circulatory support. Therefore, prevention and rehabilitation after HTx both need to be specifically tailored to this patient population and be multidisciplinary in nature. Prevention and rehabilitation programmes should be initiated early after HTx and continued during the entire post-transplant journey. This clinical consensus statement focuses on the importance and the characteristics of prevention and rehabilitation designed for HTx recipients.

Abstract Background Physical inactivity and a sedentary lifestyle are common among people with heart failure (HF), which may lead to worse prognosis. On an already existing mHealth platform, we developed a novel tool called the Activity coach, aimed at increasing physical activity. The aim of this study was to evaluate the usability of the Activity coach and assess feasibility of outcome measures for a future efficacy trial. Methods A mixed-methods design was used to collect data. People with a HF diagnosis were recruited to use the Activity coach for four weeks. The Activity coach educates the user about physical activity, provides means of registering daily physical activity and helps the user to set goals for the next week. The usability was assessed by analysing system user logs for adherence, reported technical issues and by interviews about user experiences. Outcome measures assessed for feasibility were objective physical activity as measured by an accelerometer, and subjective goal attainment. Progression criteria for the usability assessment and for the proposed outcomes, were described prospectively. Results Ten people with HF were recruited, aged 56 to 78 with median age 72. Data from nine of the ten study participants were included in the analyses. Usability: The Activity coach was used 61% of the time and during the first week two study participants called to seek technical support. The Activity coach was found to be intuitive and easy to use by all study participants. An increased motivation to be more physically active was reported by six of the nine study participants. However, in spite of feeling motivated, four reported that their habits or behaviours had not been affected by the Activity coach. Feasibility: Data was successfully stored in the deployed hardware as intended and the accelerometers were used enough, for the data to be analysable. One finding was that the subjective outcome goal attainment, was challenging to collect. A proposed mitigator for this is to use pre-defined goals in future studies, as opposed to having the study participants be completely free to formulate the goals themselves. Conclusions It was confirmed that the Activity coach was easy to use. Furthermore, it might stimulate increased physical activity in a population of people with HF, who are physically inactive. The outcomes investigated seem feasible to include in a future efficacy trial. Trial registration ClinicalTrials.gov identifier: NCT05235763. Date of first registration: 11/02/2022.

IntroductionFew studies explored healthcare needs of elderly heart failure (HF) patients with comorbidities in view of a personalized intervention conducted by Care Managers (CM) in the framework of Blended Collaborative Care (BCC). The aims of the present study were to: (1) identify perceived healthcare needs/preferences in elderly patients with HF prior to a CM intervention; (2) investigate possible associations between healthcare needs/preferences, sociodemographic variables (age; sex) and number of comorbidities.MethodPatients aged 65 years or more affected by HF with at least 2 medical comorbidities were enrolled in the study. They were assessed by structured interviewing with colored cue cards that represented six main topics including education, individual tailoring of treatment, monitoring, support, coordination, and communication, related to healthcare needs and preferences.ResultsThirty-three patients (Italy = 21, Denmark = 7, Germany = 5; mean age = 75.2 ± 7.7 years; males 63.6%) were enrolled from June 2021 to February 2022. Major identified needs included: HF information (education), patients' involvement in treatment-related management (individual tailoring of treatment), regular checks of HF symptoms (monitoring), general practitioner update by a CM about progression of symptoms and health behaviors (coordination), and telephone contacts with the CM (communication). Regarding communication modalities with a CM, males preferred phone calls (χ2 = 6.291, p = 0.043) and mobile messaging services (χ2 = 9.647, p = 0.008), whereas females preferred in-person meetings and a patient dashboard. No differences in needs and preferences according to age and number of comorbidities were found.DiscussionThe findings highlight specific healthcare needs and preferences in older HF multimorbid patients, allowing a more personalized intervention delivered by CM in the framework of BCC.

IntroductionInvolving patients and carers in the development of blended collaborative care (BCC) interventions for multimorbid heart failure (HF) patients is recommended but rarely practised, and research on the patient perspective is scarce. The aim of this study is to investigate patients’ and carers' care-related needs and preferences to better customize a novel international BCC intervention.MethodsA qualitative study design using framework analysis was employed. The study was performed in accordance with the EQUATOR standards for reporting qualitative research (SRQR). Patients aged at least 65 years with HF and at least two other physical diseases as well as their carers completed semistructured interviews in Germany, Italy, and Denmark. Based on these interviews, personas (prototype profiles of patients and carers) were created.ResultsData from interviews with 25 patients and 17 carers were analysed. Initially, seven country-specific personas were identified, which were iteratively narrowed down to a final set of 3 personas: (a) the one who needs and wants support, (b) the one who has accepted their situation with HF and reaches out when necessary, and (c) the one who feels neglected by the health care system. Carers identifying with the last persona showed high levels of psychological stress and a high need for support.DiscussionThis is the first international qualitative study on patients' and carers' needs regarding a BCC intervention using the creation of personas. Across three European countries, data from interviews were used to develop three contrasting personas. Instead of providing “one size fits all” interventions, the results indicate that BCC interventions should offer different approaches based on the needs of individual patients and carers. The personas will serve as a basis for the development of a novel BCC intervention as part of the EU project ESCAPE (Evaluation of a patient-centred biopSychosocial blended collaborative CAre Pathway for the treatment of multimorbid Elderly patients).

Abstract Aims Exercise games (exergames) have been recently proposed as a mode of facilitating physical activity in patients with chronic diseases. Although patients supported with left ventricular assist devices (LVADs) benefit from physical activity, specific LVAD‐related issues hinder their ability to exercise properly. The objective of this study was to assess the feasibility and safety of exergaming in LVAD‐supported patients. Methods and results Eleven LVAD‐supported patients were enrolled in a 4 week exergaming programme using Nintendo Wii console with five sport games. Patients were instructed to play for 30 min a day, 5 days a week. Data on exercise capacity and exergaming were collected by using the 6 min walk test (6MWT) and a daily self‐report diary, respectively. Feasibility of using the console and its safety was assessed by a semi‐structured patient interview. Quality of life was assessed by the Minnesota Living with Heart failure Questionnaire (MLHFQ) and the Cantril's Ladder of Life. Safety was assessed by patient's report in interview and diary. The study group consisted of 10 male patients and 1 female patient, mean age of 67 ± 7 years, of whom 10 were supported with the HeartMate 3 LVAD for a median of 10 (interquartile range 3, 21) months. Baseline exercise capacity assessed by the 6MWT ranged from 240 to 570 m (mean 448 ± 112). After 4 weeks of exergaming, 6MWT distance increased from a mean of 448 ± 112 (evaluated in six patients) to 472 ± 113 m (P = 0.023). Patients' Cantril's Ladder of Life score improved numerically from an average of 6.13 to 7.67, as did their MLHFQ score from 45.9 ± 27 to 38.7 ± 18, with higher and lower scores, respectively, reflecting higher quality of life. No specific LVAD‐related safety issues regarding exergaming were reported. Conclusions Exergaming was found to be a safe and feasible mode for encouraging physical activity in LVAD‐supported patients and carries a potential for improving exercise capacity and quality of life in these patients. Larger scale studies are warranted to further investigate the effect of exergaming in this patient population.

Abstract Heart failure (HF) is a long‐term clinical syndrome, with increasing prevalence and considerable healthcare costs that are further expected to increase dramatically. Despite significant advances in therapy and prevention, mortality and morbidity remain high and quality of life poor. Epidemiological data, that is, prevalence, incidence, mortality, and morbidity, show geographical variations across the European countries, depending on differences in aetiology, clinical characteristics, and treatment. However, data on the prevalence of the disease are scarce, as are those on quality of life. For these reasons, the ESC‐HFA has developed a position paper to comprehensively assess our understanding of the burden of HF in Europe, in order to guide future policies for this syndrome. This manuscript will discuss the available epidemiological data on HF prevalence, outcomes, and human costs—in terms of quality of life—in European countries.

Abstract Aims One of the bothersome symptoms that heart failure (HF) patients can experience is thirst. There are limited data on the association between thirst and fluid intake and clinical variables. Therefore, the aim of this study was to describe severe thirst in stable HF patients and assess factors related to severe thirst, including actual fluid intake and sodium intake. Methods and results The study had a cross‐sectional design. Stable HF patients from two HF clinics in the Netherlands were included and assessed thirst by a visual analogue scale ranging from 0 to 100. They also completed questionnaires on thirst distress, self‐care behaviour, and HF symptoms. A 3 day food diary was completed to assess actual fluid intake and sodium intake. Finally, patients collected urine for 24 h. Patients were divided into severe and low thirst based on thirst score and thirst distress. T‐tests, Mann–Whitney tests, and χ2 tests were conducted to assess differences between both groups. Multivariable logistic regression analysis was performed to assess factors associated with severe thirst. A total of 100 patients were included (40% female, mean age 72 ± 12) of which 68 completed the food diary. The mean thirst score was 28 ± 25, and 25% experienced severe thirst. The majority of patients (94%) were prescribed a fluid restriction, 37% had a restriction between 1500 and 2000 mL, and 32% a restriction of 1500 mL. Severe thirst in the total group with 100 patients was associated with a higher dose of loop diuretics [odds ratio (OR) 3.25; 95% confidence interval (CI) 1.01–10.45; P = 0.048] and a higher urine output over 24 h (OR 1.002; 95% CI 1.00–1.003; P = 0.010). In the group of patients who completed the food diary (N = 68), severe thirst was associated with a higher sodium intake (OR 1.002; 95% CI 1.001–1.003; P = 0.003), a higher dose of loop diuretics (OR 22.69; 95% CI 2.78–185.04; P = 0.004), and more fatigue (OR 11.2; 95% CI 1.54–82.12; P = 0.017). Conclusions A quarter of all stable HF patients experienced severe thirst. A higher dose of loop diuretics was associated with more thirst; therefore, it might be important to review the dose of loop diuretics critically and try to decrease it in order to relieve severe thirst. Because all patients were prescribed a fluid restriction, a reconsideration of this restriction is also suggested.

Abstract Aims This study aimed to explore factors related to non‐adherence to exergaming in patients with heart failure. Methods and results Data from patients in the exergame group in the HF‐Wii trial were used. Adherence to exergaming was defined as playing 80% or more of the recommended time. Data on adherence and reasons for not exergaming at all were collected during phone calls after 2, 4, 8, and 12 weeks. Logistic regression was performed between patients who were adherent and patients who were non‐adherent. Secondly, a logistic regression was performed between patients who not exergamed at all and patients who were adherent to exergaming. Finally, we analysed the reasons for not exergaming at all with manifest content analysis. Almost half of the patients were adherent to exergaming. Patients who were adherent had lower social motivation [odds ratio (OR) 0.072; 95% confidence interval (CI) 0.054–0.095], fewer sleeping problems (OR 0.84; 95% CI 0.76–0.092), and higher exercise capacity (OR 1.003; 95% CI 1.001–1.005) compared with patients who were non‐adherent. Patients who not exergamed at all had lower cognition (OR 1.18; 95% CI 1.06–1.31) and more often suffered from peripheral vascular disease (OR 3.74; 95% CI 1.01–13.83) compared with patients who were adherent to exergaming. Patients most often cited disease‐specific barriers as a reason for not exergaming at all. Conclusions A thorough baseline assessment of physical function and cognition is needed before beginning an exergame intervention. It is important to offer the possibility to exergame with others, to be able to adapt the intensity of physical activity.

Abstract Aims Improvement in exercise capacity is the primary goal of physical activity programmes for patients with heart failure (HF). Although activity programmes are effective for some patients, others do not benefit. Identifying factors related to a lack of improvement in submaximal exercise capacity may help us interpret findings and design new interventions. The aim of this study is to identify factors contributing to a lack of improvement in submaximal exercise capacity 3 months after physical activity advice or an exergame intervention in patients with HF. Additionally, we aimed to assess differences in lack of improvement in submaximal exercise capacity of patients whose baseline exercise capacity predicted a worse compared with better prognosis of HF. Methods and results This secondary analysis of the HF‐Wii study analysed baseline and 3 month data of the 6 min walk test (6MWT) from 480 patients (mean age 67 years, 72% male). Data were analysed separately in patients with a pre‐defined 6 min walking distance at baseline of

Abstract Aims This study aimed to evaluate psychometric properties of the Spanish version of the Thirst Distress Scale for patients with Heart Failure (TDS‐HF) and to describe thirst distress‐associated factors in outpatients at a heart failure (HF) clinic in Spain. Thirst is common in patients with HF, but thirst distress has rarely been addressed and may significantly decrease quality of life. Methods and results A cross‐sectional study was performed assessing perceived thirst distress by patients with HF during the preceding 3 days, with the TDS‐HF (scores 8 to 40). Univariable and multivariable linear regression analyses were performed to identify variables independently associated with thirst distress. Three‐hundred two HF outpatients were included (age 67 ± 12 years, 74% male, HF duration 82 ± 75 months, left ventricular ejection fraction 42 ± 14%). Most patients were on treatment with fluid restriction (99%), sodium restriction (99%), and diuretics (70%). The psychometric evaluation of the Spanish version of the TDS‐HF showed satisfactory item‐total and inter‐item correlations (range from 0.77 to 0.85 and 0.60 to 0.84, respectively), and internal consistency was 0.95 (Cronbach's alpha). The majority perceived mild to moderate thirst distress, and 18% perceived it as high or severe. The mean score obtained was 16.2 ± 9.3 (median 13, Q1–Q3 8–20). Higher serum urea {beta coefficient 1.6 [95% confidence interval (CI) 0.267 to 2.92], P = 0.019} and lower potassium [beta coefficient −3.63 (85% CI −6.32 to −0.93), P = 0.009] remained significantly associated with thirst distress in the multivariable analysis, together with the dose of diuretics [beta coefficient 2.98 (95% CI 1.37 to 4.59), P

Abstract Aims This study aimed to evaluate the different health‐related quality of life (HR‐QoL) aspects in patients with both short‐term and long‐term duration LVAD support at pre‐specified time intervals. Methods and results We performed a single‐centre HR‐QoL analysis of short‐term and long‐term LVAD‐supported patients using the short version of the Kansas City Cardiomyopathy Questionnaire (KCCQ‐12) and the Changes in Sexual Functioning Questionnaire along with a survey to evaluate patients' social and driving routines. Data were collected at baseline and at 6 or 12 month follow‐up. Included were 46 patients with a median time from LVAD implantation of 1.1 [inter‐quartile range (IQR) 0.5, 2.6] years. The median KCCQ‐12 summary score was 56 (IQR 29, 74) with most favourable scores in the symptom frequency domain [75 (IQR 50, 92)] and worse scores in the physical limitation [42 (IQR 25, 75)] and QoL [44 (IQR 25, 75)] domains. No significant changes were apparent during study follow‐up [KCCQ‐12 summary score 56 (IQR 35, 80)], and no significant correlation between the KCCQ‐12 summary score and ventricular assist device‐support duration was detected (r = −0.036, P = 0.812). Sexual dysfunction was noted across all domains with a cumulative score of 31 (IQR 22, 42). Seventy‐six per cent of patients resumed driving after LVAD implantation, and 43% of patients reported they socialize with family and friends more frequently since surgery. Conclusions Short‐term and long‐term LVAD‐supported patients had impaired HR‐QoL and sexual function at baseline and at follow‐up yet reported an improvement in social interactions and independency. A broader spectrum of patient's reported HR‐QoL measures should be integrated into the pre‐LVAD implantation assessment and preparation.

Abstract Aims A cardiopulmonary exercise (CPX) test is considered the gold standard in evaluating maximal oxygen uptake. This study aimed to evaluate the predictive validity of equations provided by Burr et al., Ross et al., Adedoyin et al., and Cahalin et al. in predicting peak VO2 from 6 min walk test (6MWT) distance in patients with heart failure (HF). Methods and Results New York Heart Association Class I–III HF patients performed a maximal effort CPX test and two 6MWTs. Correlations between CPX VO2 peak and the predicted VO2 peak, coefficient of determination (R2), and mean absolute percentage error (MAPE) scores were calculated. P‐values were set at 0.05. A total of 106 participants aged 62.5 ± 11.5 years completed the tests. The mean VO2 peak from CPX testing was 16.4 ± 3.9 mL/kg/min, and the mean 6MWT distance was 419.2 ± 93.0 m. The predicted mean VO2 peak (mL/kg/min) by Burr et al., Ross et al., Adedoyin et al., and Cahalin et al. was 22.8 ± 8.8, 14.6 ± 2.1, 8.30 ± 1.4, and 16.6 ± 2.8. A significant correlation was observed between the CPX test VO2 peak and predicted values. The mean difference (0.1 mL/kg/min), R2 (0.97), and MAPE (0.14) values suggest that the Cahalin et al. equation provided the best predictive validity. Conclusions The equation provided by Cahalin et al. is simple and has a strong predictive validity, and researchers may use the equation to predict mean VO2 peak in patients with HF. Based on our observation, equations to predict individual maximal oxygen uptake should be used cautiously.

Abstract Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients’ and family members’ preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

Abstract Aim The purpose of this study was to explore the utility of two single‐item self‐report (SR) questions to assess physical inactivity in patients with heart failure (HF). Methods and results This is a cross‐sectional study using data from 106 patients with HF equipped with accelerometers for 1 week each. Two SR items relating to physical activity were also collected. Correlations between accelerometer activity counts and the SR items were analysed. Patients were classified as physically active or inactive on the basis of accelerometer counts, and the SR items were used to try to predict that classification. Finally, patients were classified as having high self‐reported physical activity or low self‐reported physical activity, on the basis of the SR items, and the resulting groups were analysed for differences in actual physical activity. There were significant but weak correlations between the SR items and accelerometer counts: ρ = 0.24, P = 0.016 for SR1 and ρ = 0.21, P = 0.033 for SR2. Using SR items to predict whether a patient was physically active or inactive produced an area under the curve of 0.62 for SR1, with a specificity of 92% and a sensitivity of 30%. When dividing patients into groups on the basis of SR1, there was a significant difference of 1583 steps per day, or 49% more steps in the high self‐reported physical activity group (P

Abstract Aim According to guidelines, a prognosis should be discussed with all heart failure (HF) patients. However, many patients do not have these conversations with a healthcare provider. The aim of this study was to describe attitudes of cardiologists in Sweden and the Netherlands regarding this topic. Methods and results A survey was sent to 250 cardiologists in Sweden and the Netherlands with questions whether should the prognosis be discussed, what time should the prognosis be discussed, whom should discuss, what barriers were experienced and how difficult it is to discuss the prognosis (scale from 1–10). A total of 88 cardiologists participated in the study. Most cardiologists (82%) reported to discussing the prognosis with all HF patients; 47% at the time of diagnoses. The patient's own cardiologist, another cardiologist, the HF nurse, or the general practitioner could discuss this with the patient. Important barriers were cognitive problems (69%) and a lack of time (64%). Cardiologists found it not very difficult to discuss the topic (mean score 4.2) with a significant difference between Swedish and Dutch cardiologist (4.7 vs. 3.7; P < 0.05). Conclusion Most cardiologists found it important to discuss the prognosis with HF patients although there are several barriers. Swedish cardiologists found it more difficult compared with their Dutch colleagues. A multidisciplinary approach seems important for improvement of discussing prognosis with HF patients.

Abstract Aims Cognitive impairment (CI) in heart failure (HF) patients has mostly been studied in single countries in specific health care settings. Sociodemographic and clinical predictors of the global CI and CI dimensions are still unclear. We described CI in a diverse HF population recruited in several countries and in different health care settings and investigated sociodemographic and clinical factors associated with the global and specific CI dimensions in HF patients. Methods and results A secondary analysis from the baseline data of the Wii‐HF trial. Patients (n = 605) were enrolled in Sweden, Italy, Israel, The Netherlands, Germany, and the United States. We used the Montreal Cognitive Assessment to evaluate CI and the 6 minute walk test (6MWT) to measure exercise capacity. Patients were on average 67 years old (SD, 12), and 86% were in New York Heart Association Class II and III. The mean Montreal Cognitive Assessment score was 24 (SD, 4), and 67% of patients had at least a mild CI. The item evaluating short‐term memory had a considerable proportion of low scoring patients (28.1%). Worse CI was associated with patients' older age, lower education, and lower 6MWT scores (R2 = 0.27). CI dimension scores were differently associated with specific clinical and demographic variables, but the 6MWT scores were associated with five out of seven CI dimension scores. Conclusions CI is an important problem in HF patients, with specific challenges in regard to memory. Exercise capacity is a modifiable factor that could be improved in HF patients with the potential to improve cognition and other outcomes in this population.

Informal caregivers have an important role in caring for family members at home. Supporting persons with a chronic illness such as heart failure (HF) in managing their self-care is reported to be a challenge and telemonitoring has been suggested to be of support. Aim: to explore informal caregivers’ experiences with performing non-invasive telemonitoring to support persons with HF at home for 30 days following hospital discharge in Norway and Lithuania. Methods: A qualitative explorative study of informal caregivers performing non-invasive telemonitoring using lung-impedance measurements and short message service (SMS). Data was collected using semi-structured interviews with informal caregivers of persons with HF in NYHA class III-IV in Norway and Lithuania. Results: Nine interviews were conducted with informal caregivers of persons with HF who performed non-invasive telemonitoring at home. A sequential process of three categories emerged from the data: access to support, towards routinizing, and mastering non-invasive telemonitoring. Conclusion: Informal caregivers performed non-invasive telemonitoring for the first time in this study. Their experiences were of a sequential process that included access to support from health care professionals, establishing a routine together, and access to nurses or physicians in HF care as part of mastering. This study highlights involving informal caregivers and persons with HF together in the implementation and future research of telemonitoring in HF care.

Objective: To describe the experience of physical activity in patients with heart failure who were randomized to a control group in which they received exercise advice and motivational support. Design: A qualitative descriptive interview study, using qualitative content analysis. Patients: Fifteen patients with heart failure. Methods: Interviews with members of the control group in a physical activity trial (Heart Failure-Wii study), who received exercise advice and telephone follow-ups. Results: The experience of physical activity was described by 4 categories: (i) affected by study participation; (ii) impact of having heart failure; (iii) mixed feelings when physically active; and (iv) influence of the social and physical environment. Study participation made patients feel encouraged or obliged, or they gained a sense of security in connection with becoming more physically active. Symptoms, side-effects and barriers could hamper their physical activity. They changed their type and level of physical activity, or used resources or equipment to become physically active. Patients experienced physical and emotional improvements and developed routines and structures, and their environment and caregivers were able to influence their physical activity. Conclusion: The role of study participation, having heart failure, and psychological and environmental factors describe the experiences of physical activity in patients with heart failure who were randomized to a control group, and are important in evaluating and motivating patients’ physical activity.

Abstract 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 Spearman’s 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.

Abstract 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.

BackgroundBiomarkers may help us to unravel differences in the underlying pathophysiology between heart failure (HF) patients with a reduced ejection fraction (HFrEF) and a preserved ejection fraction (HFpEF). Therefore, we compared biomarker profiles to characterize pathophysiological differences between patients with HFrEF and HFpEF. Methods and ResultsWe retrospectively analyzed 33 biomarkers from different pathophysiological domains (inflammation, oxidative stress, remodeling, cardiac stretch, angiogenesis, arteriosclerosis, and renal function) in 460 HF patients (21% HFpEF, left ventricular ejection fraction ≥45%) measured at discharge after hospitalization for acute HF. The association between these markers and the occurrence of all‐cause mortality and/or HF‐related rehospitalizations at 18 months was compared between patients with HFrEF and HFpEF. Patients were 70.6±11.4 years old and 37.4% were female. Patients with HFpEF were older, more often female, and had a higher systolic blood pressure. Levels of high‐sensitive C‐reactive protein were significantly higher in HFpEF, while levels of pro‐atrial‐type natriuretic peptide and N‐terminal pro‐brain natriuretic peptide were higher in HFrEF. Linear regression followed by network analyses revealed prominent inflammation and angiogenesis‐associated interactions in HFpEF and mainly cardiac stretch–associated interactions in HFrEF. The angiogenesis‐specific marker, neuropilin and the remodeling‐specific marker, osteopontin were predictive for all‐cause mortality and/or HF‐related rehospitalizations at 18 months in HFpEF, but not in HFrEF (P for interaction

OBJECTIVE: To adapt and validate a Brazilian Portuguese version of the European Heart Failure Self-Care Behavior Scale. METHODS: The cross-cultural adaptation (translation, synthesis, back-translation, expert committee review, and pretesting) and validation (assessment of face validity, content validity, and internal consistency reliability) were carried out in accordance with the literature. The European Heart Failure Self-Care Behavior Scale assesses key components of self-care: recognition of the signs and symptoms of decompensated heart failure (HF) and decision-making when these signs and symptoms arise. It comprises 12 items (range 12-60, where lower scores indicate better self-care). RESULTS: The sample comprised 124 HF patients with a mean age of 62.3 ± 12 years. The Cronbach's Alpha internal consistency was 0.70 and the intraclass correlation coefficient for reproducibility was 0.87. CONCLUSION: Face and content validity, internal consistency and reproducibility have lended validity and reliability for the use of the instrument in Brazil.OBJETIVO: Adaptar y validar European Heart Failure Self-Care Behavior Scale para uso en lengua portuguesa de Brasil. MÉTODOS: El proceso de adaptación cultural (traducción, síntesis, retro traducción, revisión por comité de expertos y pré test), validación (validez de facie, de contenido y confiabilidad) fue realizado según la literatura. La European Heart Failure Self-Care Behavior Scale evalúa los componentes-clave para el auto cuidado: reconocimiento de señales y síntomas de descompensación de insuficiencia cardiaca (IC) y la decisión cuando ocurren dichos síntomas. Se compone de 12 cuestiones (que van desde 12-60, en donde las puntuaciones bajas indican peor autocuidado). RESULTADOS: Fueron inclusos 124 pacientes con IC, con edad entre 62,3 ±12 años. La consistencia interna de las cuestiones presentó un Alfa de Cronbach de 0,70 y la reproducibilidad evaluada por el coeficiente de correlación. CONCLUSIÓN: La validad de fase, de contenido, la consistencia interna y la reproducibilidad concedieron validad y confiabilidad al instrumento para uso en Brasil.OBJETIVO: adaptar e validar a European Heart Failure Self-Care Behavior Scale para uso na língua portuguesa do Brasil. MÉTODOS: o processo de adaptação cultural (tradução, síntese, retrotradução, revisão por comitê de especialistas e pré-teste) e validação (validade de face, de conteúdo e fidedignidade) foi realizado de acordo com a literatura. A European Heart Failure Self-Care Behavior Scale avalia os componentes-chave para o autocuidado: reconhecimento dos sinais e sintomas de descompensação da insuficiência cardíaca (IC) e a tomada de decisão na ocorrência desses sintomas. É composta por 12 questões (variando de 12-60, baixos escores indicam melhor autocuidado). RESULTADOS: foram incluídos 124 pacientes com IC com idade de 62,3±12 anos. A consistência interna das questões apresentou um alfa de Cronbach de 0,70 e a reprodutibilidade avaliada pelo coeficiente de correlação intraclasse foi de 0,87. CONCLUSÃO: a validade de face, de conteúdo, a consistência interna e a reprodutibilidade conferiram validade e fidedignidade ao instrumento para uso no Brasil.

Introduction: Chronic heart failure is a common condition affecting up to 15 million people in the extended Europe. Heart failure is burdensome and costly for patients in terms of decreased quality of life and poor prognosis and it is also costly for society. Better integrated care is warranted in this population and specialized heart failure care can save costs and improve the quality of care. However, only a few European countries have implemented specialized home care and offered this to a larger number of patients with heart failure.Method: We developed a guide on Home Health in Heart Failure patients from a literature review, a survey of heart failure management programs, the opinion of researchers and practitioners, data from clinical trials and a reflection of an international expert meeting.Results: In integrated home care for heart failure patients it is advised to consider the following components: integrated multi-disciplinary care, patient and partner participation, care plans with clear goals of care, patient education, self-care management, appropriate access to care and optimized treatment.Discussion: We summarized the state of the art of home based care for heart failure patients in Europe, described the typical content of such care to provide a guide for health care providers.