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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.

AbstractPhysical activity is important for everyone to maintain and improve health, especially for people with chronic diseases. Mobile exergaming has the potential to increase physical activity and to specifically reach people with poor activity levels. However, commercial mobile exergames are not specially designed for older people with chronic illnesses such as heart failure. The primary aim of this viewpoint is to describe the underlying reasoning guiding the design choices made in developing a mobile exergame, Heart Farming, tailored specifically for sedentary older people diagnosed with heart failure. The goal of the exergame is to increase physical activity levels by increasing the daily walking duration of patients with heart failure by at least 10 minutes. The rationale guiding the design decisions of the mobile exergame is grounded in the thoughtful integration of gamification strategies tailored for application in cardiovascular care. This integration is achieved through applying gamification components, gamification elements, and gamification principles. The Heart Farming mobile exergame is about helping a farmer take care of and expand a virtual farm, with these activities taking place while the patient walks in the real world. The exergame can be adapted to individual preferences and physical condition regarding where, how, when, and how much to play and walk. The exergame is developed using augmented reality so it can be played both indoors and outdoors. Augmented reality technology is used to track the patients’ movement in the real world and to interpret that movement into events in the exergame rather than to augment the mobile user interface.

ABSTRACT Aim To describe the life situation of spouses having a partner with heart disease and adolescents living at home. Design Qualitative inductive design. Method Participants (n = 22) were included from three Scandinavian countries. Semi‐structured interviews were analysed using thematic analysis with an inductive and latent approach. Results Three themes were derived. ‘Being in spousal and parental role transition’ described how daily life had been affected and parental responsibilities had been doubled due to their partner's heart disease. ‘Living with unpredictability and insecurity’ included how the unpredictable illness trajectory caused worries and affected the well‐being of the family. ‘Managing a challenging life situation’ highlights how spouses coped with their partners' heart disease and adapted to a new life situation. Conclusion Young spouses' life situation was greatly affected by their partner's heart disease, resulting in increased responsibilities and double parenthood. Having a positive attitude and mindset towards life was used as a strategy to cope with the changed life situation and find a new way of life. Implications for the Profession and/or Patient Care All family members are affected by heart disease. Spouses needed additional professional support and guidance on how to involve the children when a parent is ill. Impacts This study highlights how young spouses, with adolescents living at home, experience their life situation. The life situation is unpredictable due to the partner's heart disease, as they must handle both caring for their partner and taking on double parenthood. Research involving family members can improve person‐ and family‐centred care and treatment outcomes in health care and society. Reporting Method COREQ checklist was used preparing the manuscript. Patient or Public Contribution Data collection included interviews with spouse. What Does This Paper Contribute to the Wider Global Clinical Community? By highlighting the spouses changed life situation due to heart disease and the importance of including them in health care.

Reducing inactivity in patients with chronic disease is vital since it can decrease the risk of disease progression and mortality. Exergames are an innovative approach to becoming more physically active and positively affecting physical health outcomes. Serious games are designed for purposes beyond entertainment and exergames are serious games for physical activity. However, current commercial exergames might not optimally meet the needs of patients with special needs. Developing tailored exergames is challenging and requires an appropriate process. The primary goal of this viewpoint is to describe significant lessons learned from designing and developing an exergame for patients with chronic heart failure using the player-centered, iterative, interdisciplinary, and integrated (P-III) framework for serious games. Four of the framework’s pillars were used in the design and development of a mobile exergame: player-centered design, iterative development of the game, interdisciplinary teamwork, and integration of play and serious content. The mobile exergame was developed iteratively in 7 iterations by an interdisciplinary team involving users and stakeholders in all iterations. Stakeholders played various roles during the development process, making the team stay focused on the needs of the patients and creating an exergame that catered to these needs. Evaluations were conducted during each iteration by both the team and users or patients according to the player-centered design pillar. Since the exergame was created for a smartphone, the assessments were conducted both on the development computer and on the intended platforms. This required continuous deployment of the exergame to the platforms and smartphones that support augmented reality. Our findings show that the serious game P-III framework needs to be modified in order to be used for the design and development of exergames. In this viewpoint, we propose an updated version of the P-III framework for exergame development including (1) a separate and thorough design of the physical activity and physical interaction, and (2) early and continuous deployment of the exergame on the intended platform to enable evaluations and everyday life testing.

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.

Abstract Background Patients with heart failure (HF) and colorectal cancer (CRC) are prone to comorbidity, a high rate of readmission, and complex healthcare needs. Self-care for people with HF and CRC after hospitalisation can be challenging, and patients may leave the hospital unprepared to self-manage their disease at home. eHealth solutions may be a beneficial tool to engage patients in self-care. Methods A randomised controlled trial with an embedded evaluation of intervention engagement and cost-effectiveness will be conducted to investigate the effect of eHealth intervention after hospital discharge on the self-efficacy of self-care. Eligible patients with HF or CRC will be recruited before discharge from two Norwegian university hospitals. The intervention group will use a nurse-assisted intervention—eHealth@Hospital-2-Home—for six weeks. The intervention includes remote monitoring of vital signs; patients’ self-reports of symptoms, health and well-being; secure messaging between patients and hospital-based nurse navigators; and access to specific HF and CRC health-related information. The control group will receive routine care. Data collection will take place before the intervention (baseline), at the end of the intervention (Post-1), and at six months (Post-2). The primary outcome will be self-efficacy in self-care. The secondary outcomes will include measures of burden of treatment, health-related quality of life and 30- and 90-day readmissions. Sub-study analyses are planned in the HF patient population with primary outcomes of self-care behaviour and secondary outcomes of medication adherence, and readmission at 30 days, 90 days and 6 months. Patients’ and nurse navigators’ engagement and experiences with the eHealth intervention and cost-effectiveness will be investigated. Data will be analysed according to intention-to-treat principles. Qualitative data will be analysed using thematic analysis. Discussion This protocol will examine the effects of the eHealth@ Hospital-2-Home intervention on self-care in two prevalent patient groups, HF and CRC. It will allow the exploration of a generic framework for an eHealth intervention after hospital discharge, which could be adapted to other patient groups, upscaled, and implemented into clinical practice. Trial registration Clinical trials.gov (ID 301472).

Abstract Background Heart failure (HF) is a progressive disease associated with a high burden of symptoms, high morbidity and mortality, and low quality of life (QoL). This study aimed to evaluate the feasibility and potential outcomes of a novel multicomponent complex intervention, to inform a future full-scale randomized controlled trial (RCT) in Switzerland. Methods We conducted a pilot RCT at a secondary care hospital for people with HF hospitalized due to decompensated HF or with a history of HF decompensation over the past 6 months. We randomized 1:1; usual care for the control (CG) and intervention group (IG) who received the intervention as well as usual care. Feasibility measures included patient recruitment rate, study nurse time, study attrition, the number and duration of consultations, intervention acceptability and intervention fidelity. Patient-reported outcomes included HF-specific self-care and HF-related health status (KCCQ-12) at 3 months follow-up. Clinical outcomes were all-cause mortality, hospitalization and days spent in hospital. Results We recruited 60 persons with HF (age mean = 75.7 years, ± 8.9) over a 62-week period, requiring 1011 h of study nurse time. Recruitment rate was 46.15%; study attrition rate was 31.7%. Follow-up included 2.14 (mean, ± 0.97) visits per patient lasting a total of 166.96 min (mean, ± 72.55), and 3.1 (mean, ± 1.7) additional telephone contacts. Intervention acceptability was high. Mean intervention fidelity was 0.71. We found a 20-point difference in mean self-care management change from baseline to 3 months in favour of the IG (Cohens’ d = 0.59). Small effect sizes for KCCQ-12 variables; less IG participants worsened in health status compared to CG participants. Five deaths occurred (IG = 3, CG = 2). There were 13 (IG) and 18 (CG) all-cause hospital admissions; participants spent 8.90 (median, IQR = 9.70, IG) and 15.38 (median, IQR = 18.41, CG) days in hospital. A subsequent full-scale effectiveness trial would require 304 (for a mono-centric trial) and 751 participants (for a ten-centre trial) for HF-related QoL (effect size = 0.3; power = 0.80, alpha = 0.05). Conclusion We found the intervention, research methods and outcomes were feasible and acceptable. We propose increasing intervention fidelity strategies for a full-scale trial. Trial registration ISRCTN10151805 , retrospectively registered 04/10/2019.

Summary: Background: There are calls to integrate serial recordings of health related quality of life (HRQoL) into routine care, clinical trials and prognosis. Little is known about the relationship between change in HRQoL and outcomes in heart failure (HF) patients by age, sex and HF subtype. Method: From the Swedish Heart Failure Registry (SwedeHF; 2008–2019), patients were categorised by reduced (

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.

BackgroundYoga is a mind-body exercise that has demonstrated its feasibility and safety even for individuals with severe long-term illness. Engaging in yoga has the potential to yield positive effects on both physical and mental well-being. Tele-yoga is a novel approach to rehabilitation in which participants practice group yoga with a live-streamed yoga instructor digitally via a tablet. This is especially beneficial for individuals who may find it difficult to leave their homes to participate in an exercise session. As part of our ongoing evaluation of the tele-yoga intervention in individuals with long-term illness, we have undertaken an exploration of participants’ expectations regarding yoga in general and tele-yoga specifically. Understanding these expectations is crucial, as they can significantly impact their satisfaction with treatment and care and influence overall intervention outcomes. ObjectiveThis study aims to explore the expectations of tele-yoga among individuals with long-term illness before starting a tele-yoga intervention. MethodsThe study employed an inductive qualitative design and is part of a process evaluation within an ongoing randomized controlled trial. A total of 89 participants were interviewed before the start of the tele-yoga intervention. The interview guide encompassed questions about their general perceptions of yoga and the specific expectations they held for the upcoming tele-yoga sessions. The interviews were transcribed and analyzed using inductive qualitative content analysis. ResultsParticipants expressed their expectations for tele-yoga, focusing on the anticipated improvements in physical function and overall health. These expectations included hopes for reduced respiratory issues; relief from discomfort, aches, and pains; as well as increased physical flexibility, coordination, and overall well-being. Besides, they expected to achieve improved psychological well-being and performance; to acquire strategies to manage stress, anger, and anxiety; and to have their motivational drive strengthened and influence other activities. Participants described tele-yoga as a new and exciting technical solution that would facilitate the delivery of yoga. A few participants remained a little hesitant toward the use of technology, with some expectations based on previous experiences. When asked about expectations, some had no idea about what to expect. Participants also had varying perspectives on yoga, with some finding it mysterious and difficult to understand. Participants expressed thoughts that they found the idea of tele-yoga taking place in groups exciting and enjoyable. They also had expectations that being part of a group would provide opportunities for mutual inspiration and encouragement among the group members. ConclusionsExpectations before an intervention can provide valuable insights into understanding the factors influencing adherence to tele-yoga and its outcomes. Our findings provide a wide range of expectations for tele-yoga, spanning both physical and mental aspects. Moreover, the technology’s potential to facilitate yoga delivery and the supportive nature of digital group interactions were evident from the results. Trial RegistrationClinicalTrials.gov NCT03703609; https://clinicaltrials.gov/ct2/show/NCT03703609

BackgroundAdequate self-care behaviour is essential for patients with a left ventricular assist device (LVAD) to prevent complications, prolong life, and optimise quality of life. However, there were no valid and reliable measurements available to assess self-care behaviour among patients with LVAD. We have previously developed the 33-item LVAD self-care behaviour scale.ObjectivesTo evaluate psychometric properties of the 33-item LVAD self-care behaviour scale.Methods and resultsData on 127 patients with a LVAD in Israel, Japan, and the USA were analysed (mean age 51±14.3, 81% male). Exploratory factor analysis extracted three factors, and 13 items were excluded from the scale. Internal consistency assessed by Cronbach's alpha was acceptable for the total scale (α = 0.80) and the three subscales: Factor 1: Monitoring (α = 0.81), Factor 2: Heart failure self-care (α = 0.67), and Factor 3: LVAD self-care (α = 0.63). The 20-item version of the LVAD self-care behaviour scale had sufficient convergent validity with another scale that assessed self-care related to the driveline of LVAD (r = 0.47, pConclusionsThe 20-item version of the LVAD self-care behaviour scale showed adequate validity and reliability. The scale is ready for use in clinical practice and research. Additional testing might further optimise the scale.

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

Objective The aim was to compare self-reported health between cardiac arrest survivors with good cerebral performance (CPC 1) and survivors with moderate cerebral disability (CPC 2).Methods This comparative register study was based on nationwide data from the Swedish Register of Cardiopulmonary Resuscitation. The study included 2058 in-hospital and out-of-hospital cardiac arrest survivors with good cerebral performance or survivors with moderate cerebral disability, 3–6 months postcardiac arrest. Survivors completed a questionnaire including the Hospital Anxiety and Depression Scale (HADS) and EQ-5D five-levels (EQ-5D-5L). Data were analysed using ordinal and linear regression models.Results For all survivors, the prevalence of anxiety and depression symptoms measured by the HADS was 14% and 13%, respectively. Using the EQ-5D-5L, the cardiac arrest survivors reported most health problems relating to pain/discomfort (57%), followed by anxiety/depression (47%), usual activities (46%), mobility (40%) and self-care (18%). Compared with the survivors with good cerebral performance, survivors with moderate cerebral disability reported significantly higher symptom levels of anxiety and depression measured with HADS, and poorer health in all dimensions of the EQ-5D-5L after adjusting for age, sex, place of cardiac arrest, aetiology and initial rhythm (p

Abstract Aims This study aimed to describe symptom prevalence of pain, shortness of breath, anxiety, and nausea and to identify factors associated with symptom relief in patients with heart failure during their last week of life. Methods and results This nationwide study used data from the Swedish Register of Palliative Care and the Swedish Causes of Death Certificate Register. The sample included 4215 patients with heart failure as the underlying cause of death. Descriptive statistics and logistic regression were used to analyse data. Pain was the most prevalent symptom (64.0%), followed by anxiety (45.1%), shortness of breath (28.8%), and nausea (11.4%). Pain was the most often totally relieved (77.5%), followed by anxiety (68.4%), nausea (54.7%), and shortness of breath (37.1%). Key aspects of palliative care such as documented palliative care in the patient record, individual medication prescriptions by injection, symptom assessment with validated scales, documented end‐of‐life discussions with patients and/or family members, and external consultation were significantly associated with symptom relief. Relief of pain, shortness of breath, anxiety, and nausea were significantly better managed in nursing homes and hospice/inpatient palliative care compared with care in hospitals. Conclusions The results show that key aspects of palliative care during the last week of life are significantly associated with symptom relief. Increased access to palliative care could provide a way to improve care during the last week of life for patients with heart failure. Home‐based settings provided more symptom relief than hospitals, which may indicate that the latter focuses on treatments and saving lives rather than promoting life before death.

We compare the prevalence of somatization in women and men with NCCP in relation to the general Swedish population, analyze the overlap between somatization, cardiac anxiety, and depressive symptoms, and explore variables associated with somatization. A cross sectional design is implemented with data collected between late October 2013 and early January 2014 from 552 patients with NCCP (mean age of 64 ​± ​17 years, 51% women) from four hospitals in southeast Sweden. Somatization was measured with the Patient Health Questionnaire-15, cardiac anxiety with the Cardiac Anxiety Questionnaire, and depressive symptoms with the Patient Health Questionnaire-9. Data were self-reported. The general population consists of 1898 females and 1508 males. Compared to the general population, somatization was significantly (p ​

Abstract Aims Data on socioeconomic‐related differences in heart failure (HF) care are sparse. Inequality in care may potentially contribute to a poor clinical outcome. We examined socioeconomic‐related differences in quality of HF care among patients with incident HF with reduced ejection fraction (EF) (HFrEF). Methods and results We conducted a nationwide population‐based cohort study among patients with HFrEF (EF ≤40%) registered from January 2008 to October 2015 in the Danish Heart Failure Registry, a nationwide registry of patients with a first‐time primary HF diagnosis. Associations between individual‐level socioeconomic factors (cohabitation status, education, and family income) and the quality of HF care defined by six guideline‐recommended process performance measures [New York Heart Association (NYHA) classification, treatment with angiotensin‐converting‐enzyme inhibitors (ACEI)/angiotensin receptor blockers (ARB), beta‐blockers and mineralocorticoid receptor antagonists, exercise training, and patient education] were assessed using multiple imputation and multivariable logistic regression controlling for potential confounders. Among 17 122 HFrEF patients included, 15 290 patients had data on all six process performance measures. Living alone was associated with lower odds of NYHA classification [adjusted OR (aOR) 0.81; 95% confidence interval (CI): 0.72–0.90], prescription of ACEI/ARB (aOR 0.76; 95% CI: 0.68–0.88) and beta‐blockers (aOR 0.84; 95% CI: 0.76–0.93), referral to exercise training (aOR 0.75; 95% CI: 0.69–0.81), and patient education (aOR 0.73; 95% CI: 0.67–0.80). Compared with high‐level education, low‐level education was associated with lower odds of NYHA classification (aOR 0.93; 95% CI: 0.79–1.11), treatment with ACEI/ARB (aOR 0.99; 95% CI: 0.81–1.20) and beta‐blockers (aOR 0.93; 95% CI: 0.79–1.09), referral to exercise training (aOR 0.73; 95% CI: 0.65–0.82), and patient education (aOR 0.86, 95% CI: 0.75–0.98). An income in the lowest tertile was associated with lower odds of NYHA classification (aOR 0.67; 95% CI: 0.58–0.79), prescription of ACEI/ARB (aOR 0.80, 95% CI: 0.67–0.95) and beta‐blockers (aOR 0.88, 95% CI: 0.86–1.01), referral to exercise training (aOR 0.59, 95% CI: 0.53–0.64), and patient education (aOR 0.66; 95% CI: 0.59–0.74) compared with an income in the highest tertile. Overall, no systematic differences were seen when the analyses were stratified by sex and age groups. Conclusions Living alone, low‐level education, and income in the lowest tertile were associated with reduced use of recommended processes of HF care among Danish HFrEF patients with a first‐time primary HF diagnosis. Efforts are warranted to ensure guideline‐recommended HF care to all HFrEF patients, irrespective of socioeconomic background.

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 Background Recurrent chest pain episodes with no clear explanation may affect patients’ psychological wellbeing and health-related quality of life (HRQoL) negatively. Despite the fact that a significant amount of patients with non-cardiac chest pain (NCCP) might have a history of Cardiac Disease (CD), there is today a lack of knowledge on how CD influences the association between psychological wellbeing and HRQoL in patients with NCCP. Therefore, the aim of this study is to describe HRQoL in patients with NCCP, with or without history of CD, and to explore the association between HRQoL and cardiac anxiety, depressive symptoms, fear of body sensations and somatization. Methods Five hundred fifty-two patients discharged with NCCP from four hospitals in Southeast Sweden completed the EQ-5D, Cardiac Anxiety Questionnaire, Patient Health Questionnaire-9, Body Sensations Questionnaire, and Patient Health Questionnaire-15. Results Fifty precent reported at least moderate problems regarding pain/discomfort and 25% reported at least moderate problems in the HRQoL dimensions mobility, usual activities, and anxiety/depression. Patients with NCCP and history of CD reported significantly lower HRQoL (p ≤ 0.05) compared to patients with NCCP without CD. In the total study population, cardiac anxiety, depressive symptoms, and somatization had weak significant negative associations (beta = 0.187–0.284, p

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.

Abstract Background Elderly individuals are increasingly represented among patients with implantable cardioverter defibrillators (ICD), but data describing life with an ICD are scarse among octo- and nonagenarians. Moreover, few studies have reported those elderly patients’ perspective on timly discussions concerning what shock deactivation involves, preferences on battery replacement, and their attitudes about turning off the ICD nearing end-of-life. Consequently, the aim of the study was to describe outlooks on life and death in octo- and nonagenarian ICD-recipients. Methods Participants were identified via the Swedish Pacemaker- and ICD-registry, with 229 octo- and nonagenarians (82.0 ± 2.2 years, 12% female) completing the survey on one occasion. The survey involved questions on health and psychological measures, as well as on experiences, attitudes and knowledge of end-of-life issues in relation to the ICD. Results The majority (53%) reported their existing health as being good/very good and rated their health status as 67 ± 18 on the EuroQol Visual Analog Scale. A total of 34% had experienced shock(s), 11% suffered from symptoms of depression, 15% had anxiety, and 26% reported concerns related to their ICD. About one third (34%) had discussed their illness trajectory with their physician, with those octo- and nonagenarians being more decisive about a future deactivation (67% vs. 43%, p

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.

Objective Even though continuity is essential after discharge, there is a lack of reliable questionnaires to measure and assess patients’ perceptions of continuity of care. The Patient Continuity of Care Questionnaire (PCCQ) addresses the period before and after discharge from hospital. However, previous studies show that the factor structure needs to be confirmed and validated in larger samples, and the aim of this study was to evaluate the psychometric properties of the PCCQ with focus on factor structure, internal consistency and stability.Design A psychometric evaluation study. The questionnaire was translated into Swedish using a forward–backward technique and culturally adapted through cognitive interviews (n=12) and reviewed by researchers (n=8).Setting Data were collected in four healthcare settings in two Swedish counties.Participants A consecutive sampling procedure included 725 patients discharged after hospitalisation due to angina, acute myocardial infarction, heart failure or atrial fibrillation.Measurement To evaluate the factor structure, confirmatory factor analyses based on polychoric correlations were performed (n=721). Internal consistency was evaluated by ordinal alpha. Test–retest reliability (n=289) was assessed with intraclass correlation coefficient (ICC).Results The original six-factor structure was overall confirmed, but minor refinements were required to reach satisfactory model fit. The standardised factor loadings ranged between 0.68 and 0.94, and ordinal alpha ranged between 0.82 and 0.95. All subscales demonstrated satisfactory test–retest reliability (ICC=0.76–0.94).Conclusion The revised version of the PCCQ showed sound psychometric properties and is ready to be used to measure perceptions of continuity of care. High ordinal alpha in some subscales indicates that a shorter version of the questionnaire can be developed.

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.

Abstract Background Psychological distress such as somatization, fear of body sensations, cardiac anxiety and depressive symptoms is common among patients with non-cardiac chest pain, and this may lead to increased healthcare use. However, the relationships between the psychological distress variables and healthcare use, and the differences in relation to history of cardiac disease in these patients has not been studied earlier. Therefore, our aim was to explore and model the associations between different variables of psychological distress (i.e. somatization, fear of body sensations, cardiac anxiety, and depressive symptoms) and healthcare use in patients with non-cardiac chest pain in relation to history of cardiac disease. Methods In total, 552 patients with non-cardiac chest pain (mean age 64 years, 51% women) responded to the Patient Health Questionnaire-15, Body Sensations Questionnaire, Cardiac Anxiety Questionnaire, Patient Health Questionnaire-9 and one question regarding number of healthcare visits. The relationships between the psychological distress variables and healthcare visits were analysed using Structural Equation Modeling in two models representing patients with or without history of cardiac disease. Results A total of 34% of the patients had previous cardiac disease. These patients were older, more males, and reported more comorbidities, psychological distress and healthcare visits. In both models, no direct association between depressive symptoms and healthcare use was found. However, depressive symptoms had an indirect effect on healthcare use, which was mediated by somatization, fear of body sensations, and cardiac anxiety, and this effect was significantly stronger in patients with history of cardiac disease. Additionally, all the direct and indirect effects between depressive symptoms, somatization, fear of body sensations, cardiac anxiety, and healthcare use were significantly stronger in patients with history of cardiac disease. Conclusions In patients with non-cardiac chest pain, in particular those with history of cardiac disease, psychological mechanisms play an important role for seeking healthcare. Development of interventions targeting psychological distress in these patients is warranted. Furthermore, there is also a need of more research to clarify as to whether such interventions should be tailored with regard to history of cardiac disease or not.

Background Follow‐up in a nurse‐led heart failure (HF) clinic is recommended in HF guidelines, but its association with outcomes remains controversial, with previous studies including few and highly selected patients. Thus, large analyses of “real‐world” samples are needed. Aims were to assess: (1) independent predictors of and (2) prognosis associated with planned referral to nurse‐led HF clinics. Methods and Results We analyzed data from the SwedeHF (Swedish HF Registry) using multivariable logistic regressions to identify independent predictors of planned referral to a nurse‐led HF clinic and multivariable Cox regressions to test associations between planned referral and outcomes (all‐cause death, HF hospitalization, and their composite). Of 40 992 patients, 39% were planned to be referred to a follow‐up in a nurse‐led HF clinic. Independent characteristics associated with planned referral were shorter duration of HF, clinical markers of more‐severe HF, such as lower ejection fraction, higher New York Heart Association class and N‐terminal pro‐B‐type natriuretic peptide, and lower blood pressure, as well as cohabitating versus living alone, male sex, fewer comorbidities, and more use of HF treatments. After adjustments, planned referral to a nurse‐led HF clinic was associated with reduced mortality and mortality/HF hospitalization, but not HF hospitalization alone. Conclusions In this nation‐wide registry, 39% of our identified HF cohort was planned to be referred to a nurse‐led HF clinic. Planned referral reflected more‐severe HF, but also sex‐ and family‐related factors, and it was independently associated with lower risk of death, but not of HF hospitalization.

Introduction. Awareness of epidemiological and clinical consequences of atrial fibrillation (AF) has increased, as have disease-related costs. Less attention has been paid to patient-related issues, such as understanding how symptoms, different therapies, and lifestyle adjustments affect daily life. We aimed to describe patients’ experiences of living with AF. Methods. The study design used a parallel convergent mixed methods approach. Patients with AF were included in the SMURF study and referred for catheter ablation. Patients completed questionnaires on symptoms, health-related quality of life, depression, anxiety, and perceived control and were interviewed. The datasets were analysed separately using inductive content analysis and descriptive statistics. Data were merged to obtain a final interpretation. Results. Nineteen patients were interviewed and 18 completed questionnaires. Twelve of the patients were male, mean age 60 years (45–75 years). Inductive qualitative analysis revealed three categories: (i) symptoms and concerns limiting life, (ii) dimensions of worries, and (iii) strategies for management. The most common symptoms were tiredness, weakness/fatigue, and breathlessness during activities, and the most pronounced negative impacts on health-related quality of life (HRQOL) were physically related, shown in the ASTA questionnaire. The most negative SF-36 scores were found in role limitations due to physical health problems and vitality. HADS revealed five patients with some degree of anxiety and four with some degree of depression. Patients had lower scores on perceived control than perceived helplessness in CAS. Patients’ perceived control was higher than their families’, and families experienced more helplessness. Conclusions. The mixed methods design deepens our understanding of challenges faced by patients. Patients experienced a limited ability to perform activities of daily living due to AF which created different kinds of worries that encouraged the use of various strategies to manage their lives. Healthcare providers need to be aware that relationships between patients and their relatives can change, and therefore they need to be supported and integrated into the care system.

To date, contemporary heart failure care remains patient-focused, but awareness of the partners' and families' situation is increasing. Randomized studies have mainly evaluated the short-term effects of dyadic interventions. Therefore, the aim of this study was to determine the 24-month effects of an intervention with psych-educational support in dyads of heart failure patients and their partners.This study used a randomized study design and 155 patient-partner dyads were enrolled. The intervention included a nurse-led program of three sessions addressing psychoeducational support.The intervention did not have any effect on health, depressive symptoms or perceived control among the patient-partner dyads after 24 months. Furthermore, time to first event did not differ significantly between the intervention group and the control patients.This study may be regarded as a first step in trying to understand dyads' need for supportive care. Individualized and more targeted interventions seem necessary to achieve a higher impact on dyad outcomes.ClinicalTrials.gov NCT02398799.

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.

Physical activity is associated with reduced risk of several cancers, including aggressive prostate cancer. The mechanisms mediating the effects are not yet understood; among the candidates are modifications of endogenous hormone levels. Long-term exercise is known to reduce serum levels of growth stimulating hormones. In contrast, the endocrine effects of acute endurance exercise include increased levels of mitogenic factors such as GH and IGF-1. It can be speculated that the elevation of serum growth factors may be detrimental to prostate cancer progression into malignancy. The incentive of the current study is to evaluate the effect of acute exercise serum on prostate cancer cell growth. We designed an exercise intervention where 10 male individuals performed 60 minutes of bicycle exercise at increasing intensity. Serum samples were obtained before (rest serum) and after completed exercise (exercise serum). The established prostate cancer cell line LNCaP was exposed to exercise or rest serum. Exercise serum from 9 out of 10 individuals had a growth inhibitory effect on LNCaP cells. Incubation with pooled exercise serum resulted in a 31% inhibition of LNCaP growth and pre-incubation before subcutaneous injection into SCID mice caused a delay in tumor formation. Serum analyses indicated two possible candidates for the effect; increased levels of IGFBP-1 and reduced levels of EGF. In conclusion, despite the fear of possible detrimental effects of acute exercise serum on tumor cell growth, we show that even the short-term effects seem to add to the overall beneficial influence of exercise on neoplasia.