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Abstract Background Thirst is the body’s natural urge to replenish fluids in response to a deficiency in hydration. Patients at the end of life gradually lose their independence and reach a point where they become unable to express their needs and can no longer drink on their own. In palliative care, the main advice is to provide regular oral care to relieve symptoms such as dry mouth and thirst. However, according to previous studies the prevalence of thirst and dry mouth remains. Aim The aim of this study was to describe palliative care, nurses’ views and experiences of thirst in end-of-life care in specialist palliative care units. Methods A qualitative interview study with an inductive approach was conducted. Eighteen nurses working in six different specialist palliative care units in different hospitals in Sweden were interviewed. The interviews were transcribed and analysed with a content analysis approach according to Graneheim and Lundman. Results When nurses discuss thirst, they perceive thirst as a problem for the patient. This is attributable to various factors, including the patient breathing with an open mouth, a reduced level of awareness, and negligence on the part of the nursing staff. Signs of thirst are dry mouth, and frequently and intense sucking on the oral care stick during oral care. It also emerged that not all nurses perceived that dying patients experienced thirst. They believe that thirst is something that is reduced in the dying patient in the same way as hunger. The most important thing to them is to relieve the dry mouth by providing good oral care. Several issues, such as a lack of guidelines paired with the patient’s reduced consciousness and hence his/her lack of communication, make assessing thirst problematic. Conclusion Nurses have different thoughts and experiences about thirst, where some perceive patients as thirsty while others perceive them as having a dry mouth. Nurses expressed that both evidence and guidelines are lacking.

Abstract Aim To describe nurses’ experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units. Research design A qualitative, reflexive thematic design with an inductive analysis was used. Participants and research context Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members. Conclusion Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process.

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.

Objective To describe the experiences of healthcare professionals with integrating telemedicine in routine heart failure (HF) care. Methods Semi-structured interviews were conducted with healthcare professionals ( n = 19) in the Netherlands who were involved in decision-making, implementation or routine use of telemedicine in HF management. Using purposive sampling, nurses, cardiologists and managers were selected to be interviewed. Interviews were performed in-person, recorded and transcribed verbatim. Interview data were analysed using a reflexive thematic analysis. Results This study identified four themes: (1) Responsibility – the lack of a clear delineation of roles and responsibilities among healthcare professionals, patients and suppliers in telemedicine. (2) Confidence and safety – telemedicine is seen by healthcare professionals as capable of enhancing safety, yet also introduces the risk of fostering a false sense of security among patients. (3) Collaboration – actively involving end-users in the development and implementation of telemedicine promotes the adoption. (4) Processes and mutual agreements – rather than replacing traditional care, telemedicine is perceived as an adjunct to it. Structured care pathways support telemedicine implementation, and personalised telemedicine can empower patients in self-care. Conclusions Telemedicine is a promising intervention in the management of HF. However, existing systems and care pathways have resulted in limited adoption. Improvements in the collaboration and establishing clear agreements on responsibilities between professional, patient and supplier can lead to more confidence in adopting telemedicine. Structured care pathways can be supportive. A personalised telemedicine approach can ensure that telemedicine remains manageable for patient and professional.

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.

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.

Abstract Aim To investigate the association of resilience with self‐care and quality of life in people with chronic obstructive pulmonary disease. Design Cross‐sectional study. Methods Data were collected between February and May 2021. Self‐care was measured with the self‐care of chronic illness inventory, quality of life was measured with the clinical chronic obstructive pulmonary disease questionnaire and resilience was measured with the resilience evaluation scale. Possible confounders were included (sex, age, smoking, time since diagnosis of chronic obstructive pulmonary disease, educational level, social support and pulmonary function). Multiple regression analysis was performed among the determinants, confounders and both outcomes. Results Participants scored fairly well on resilience (mean 22.5). Self‐care scored reasonably well (mean maintenance 65.9, mean monitoring 70.9, mean management 59.9 and mean confidence 71.5). Quality of life scored mediocre (mean 2.6). The results of the linear multiple regression were resilience, which is associated with self‐care confidence and quality of life when adjusted for possible confounders. This means people with chronic obstructive pulmonary disease with higher resilience have better self‐care confidence and higher quality of life. The outcome contributes to strengthening nursing care and further developing nurses' knowledge. The results can contribute to increasing awareness for healthcare professionals that resilience can potentially increase self‐care and quality of life.

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.

Abstract Background Thirst and dry mouth are common symptoms in terminally ill patients. It is known that family members usually request drips for their dying relative. Few studies have focused on thirst in terminally ill patients and their spouses’ experience of this, leading to a knowledge gap in this area. Aim The aim of this study was to explore spouses’ experiences of observing and managing thirst in a dying relative admitted to specialist palliative home care. Methods A qualitative interview study with an inductive approach was conducted. Eighteen spouses caring for their husband or wife admitted to specialist palliative home care in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results Three main themes emerged regarding spouses’ experiences of patients’ thirst: Knowledge and views of thirst; Control of fluid intake provides vital information; and Taking charge of their drinking is a life and death responsibility. Conclusions Spouses experience a responsibility to serve the dying person with fluids so that they will not get thirsty. It is so obvious and commonplace to them. To be able to fulfil this responsibility, they need to keep track of the patient’s fluid intake and know what quenches thirst. There is a need for research in this area to assist carers and patients in identifying which drinks best quench the patient’s thirst. Interventions are also needed to help provide/make available knowledge on suitable thirst-quenching drinks.

Abstract Background Thirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area. Aim The aim of this study was to explore palliative care physicians’ experiences of ethical challenges in relation to thirst in terminally ill patients. Methods A qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. Results When presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patient’s autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering. Conclusions All physicians in this study reported that “Starting, continuing or discontinuing drips” was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

Abstract Aims Left ventricular assist devices (LVADs) support the hearts of patients with advanced heart failure. Following LVAD implantation, patients face a complex regimen of self‐care behaviours including self‐care maintenance, self‐care monitoring and self‐care management. However, during the COVID‐19 pandemic, symptoms of anxiety and depression may have interfered with their self‐care. Currently, little is known on how specific self‐care behaviours of LVAD‐implanted patients changed during the COVID‐19 pandemic. We aim to describe the changes in self‐care behaviours among patients with an implanted LVAD in Israel during the COVID‐19 pandemic and explore the factors related to self‐care behaviour change. Methods A prospective observational cross‐sectional study design. A convenience sample of 27 Israeli LVAD‐implanted patients (mean age 62.4 ± 9, 86% male, 78.6% living with a partner) completed the LVAD Self‐Care Behaviour Scale (1 = never to 5 = always) and Hospital Anxiety and Depression Scale (0 = not at all to 3 = most of the time). Data were collected before and after the onset of the COVID‐19 pandemic in Israel. Statistical analyses included paired t‐tests, Pearson's correlations, and one‐way repeated measures ANOVAs. Results During the COVID‐19 pandemic, a significant decrease was found in patients' adherence to checking and recording their LVAD speed, flow, power and PI (Pulsatility Index) (P = 0.05), checking their INR (P = 0.01), and daily weighing (P

Abstract Introduction Hospitalization due to cardiac conditions is increasing worldwide, and follow‐up after hospitalization usually occurs in a different healthcare setting than the one providing treatment during hospitalization. This leads to a risk of fragmented care and increases the need for coordination and continuity of care after hospitalization. Furthermore, international reports highlight the importance of improving continuity of care and state that it is an essential indicator of the quality of care. Patients’ perceptions of continuity of care can be evaluated using the Patient Continuity of Care Questionnaire (PCCQ). However, the original version is extensive and may prove burdensome to complete; therefore, we aimed to develop and evaluate a short version of the PCCQ. Methods This was a psychometric validation study. Content validity was evaluated among user groups, including patients (n = 7), healthcare personnel (n = 15), and researchers (n = 7). Based on the results of the content validity and conceptual discussions among the authors, 12 items were included in the short version. Data from patients were collected using a consecutive sampling procedure involving patients 6 weeks after hospitalization due to cardiac conditions. Rasch analysis was used to evaluate the psychometric properties of the short version of the PCCQ. Results A total of 1000 patients were included [mean age 72 (SD = 10), 66% males]. The PCCQ‐12 presented a satisfactory overall model fit and a person separation index of 0.79 (Cronbach's α: .91, ordinal α: .94). However, three items presented individual item misfits. No evidence of multidimensionality was found, meaning that a total score can be calculated. A total of four items presented evidence of response dependence but, according to the analysis, this did not seem to affect the measurement properties or reliability of the PCCQ‐12. We found that the first two response options were disordered in all items. However, the reliability remained the same when these response options were amended. In future research, the benefits of the four response options could be evaluated. Conclusion The PCCQ‐12 has sound psychometric properties and is ready to be used in clinical and research settings to measure patients' perceptions of continuity of care after hospitalization. Patient or Public Contribution Patients, healthcare personnel and researchers were involved in the study because they were invited to select items relevant to the short version of the questionnaire.

Introduction Meta-analyses show postive effects of telemedicine in heart failure (HF) management on hospitalisation, mortality and costs. However, these effects are heterogeneous due to variation in the included HF population, the telemedicine components and the quality of the comparator usual care. Still, telemedicine is gaining acceptance in HF management. The current nationwide study aims to identify (1) in which subgroup(s) of patients with HF telemedicine is (cost-)effective and (2) which components of telemedicine are most (cost-)effective.Methods and analysis The RELEASE-HF (‘REsponsible roLl-out of E-heAlth through Systematic Evaluation – Heart Failure’) study is a multicentre, observational, registry-based cohort study that plans to enrol 6480 patients with HF using data from the HF registry facilitated by the Netherlands Heart Registration. Collected data include patient characteristics, treatment information and clinical outcomes, and are measured at HF diagnosis and at 6 and 12 months afterwards. The components of telemedicine are described at the hospital level based on closed-ended interviews with clinicians and at the patient level based on additional data extracted from electronic health records and telemedicine-generated data. The costs of telemedicine are calculated using registration data and interviews with clinicians and finance department staff. To overcome missing data, additional national databases will be linked to the HF registry if feasible. Heterogeneity of the effects of offering telemedicine compared with not offering on days alive without unplanned hospitalisations in 1 year is assessed across predefined patient characteristics using exploratory stratified analyses. The effects of telemedicine components are assessed by fitting separate models for component contrasts.Ethics and dissemination The study has been approved by the Medical Ethics Committee 2021 of the University Medical Center Utrecht (the Netherlands). Results will be published in peer-reviewed journals and presented at (inter)national conferences. Effective telemedicine scenarios will be proposed among hospitals throughout the country and abroad, if applicable and feasible.Trial registration number NCT05654961.

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).

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

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.

BackgroundIn home care, eHealth implementation requires health care professionals and home care clients to change their behavior because they have to incorporate the use of eHealth into their daily routines. Knowledge of factors that influence the use of eHealth in home care is needed to optimize implementation strategies. However, a comprehensive overview of such factors is lacking. ObjectiveThe aims of this study were to (1) provide insight into the types of eHealth that are used and preferred in home care and (2) identify factors that influence the use of eHealth in home care according to health care professionals and home care clients. MethodsA scoping review and online, cross-sectional survey were conducted sequentially. The survey was conducted among Dutch health care professionals with a nursing background who were working for a home care organization at the time. The capability, opportunity, motivation, behavior (COM-B) model, which posits that for any behavior (B) to occur, a person must have the capability (C), opportunity (O), and motivation (M) to perform the behavior, was used to identify influencing factors. The use of a theoretical model may contribute to a better understanding of how to achieve and sustain behavior change in clinical practice. ResultsWe included 30 studies in the scoping review. The most frequently studied type of eHealth was a telecommunication/telemonitoring system. The survey was completed by 102 participants. The most frequently used types of eHealth were electronic health records, social alarms, and online client portals. A health app was the most frequently preferred type of eHealth. We identified 22 factors that influence the use of eHealth in home care according to health care professionals and home care clients. Influencing factors were organized into the components of the COM-B model, namely capability (n=6), opportunity (n=10), and motivation (n=6). We found that there is no single influencing factor that is key to the complexity of eHealth implementation. ConclusionsDifferent types of eHealth are used, and many types of eHealth are preferred by health care professionals. The identified factors that influence the use of eHealth in home care relate to all components of the COM-B model. These factors need to be addressed and embedded in implementation strategies of eHealth to optimize the use of eHealth in home care.

Abstract Background Decisions about how to manage bothersome symptoms of chronic illness are complex and influenced by factors related to the patient, their illness, and their environment. Naturalistic decision-making describes decision-making when conditions are dynamically evolving, and the decision maker may be uncertain because the situation is ambiguous and missing information. Contextual factors, including time stress, the perception of high stakes, and input from others may facilitate or complicate decisions about the self-care of symptoms. There is no valid instrument to measure these contextual factors. The purpose of this study was to develop and test a self-report instrument measuring the contextual factors that influence self-care decisions about symptoms. Methods Items were drafted from the literature and refined with patient input. Content validity of the instrument was evaluated using a Delphi survey of expert clinicians and researchers, and cognitive interviews with adults with chronic illness. Psychometric testing included exploratory factor analysis to test dimensionality, item response theory-based approaches for item recalibration, confirmatory factor analysis to generate factor determinacy scores, and evaluation of construct validity. Results Ten contextual factors influencing decision-making were identified and multiple items per factor were generated. Items were refined based on cognitive interviews with five adults with chronic illness. After a two round Delphi survey of expert clinicians (n = 12) all items had a content validity index of > 0.78. Five additional adults with chronic illness endorsed the relevance, comprehensiveness, and comprehensibility of the inventory during cognitive interviews. Initial psychometric testing (n = 431) revealed a 6-factor multidimensional structure that was further refined for precision, and high multidimensional reliability (0.864). In construct validity testing, there were modest associations with some scales of the Melbourne Decision Making Questionnaire and the Self-Care of Chronic Illness Inventory. Conclusion The Self-Care Decisions Inventory is a 27-item self-report instrument that measures the extent to which contextual factors influence decisions about symptoms of chronic illness. The six scales (external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment) reflect naturalistic decision making, have excellent content validity, and demonstrate high multidimensional reliability. Additional testing of the instrument is needed to evaluate clinical utility.

Objectives To investigate long-term effects of a 1-year problem-based learning (PBL) on self-management and cardiac risk factors in patients with coronary heart disease (CHD).Design A prospective, randomised, parallel single centre trial.Settings Primary care settings in Sweden.Participants 157 patients with stable CHD completed the study. Subjects with reading and writing impairments, mental illness or expected survival less than 1 year were excluded.Intervention Participants were randomised and assigned to receive either PBL (intervention) or home-sent patient information (control group). In this study, participants were followed up at baseline, 1, 3 and 5 years.Primary and secondary outcomes Primary outcome was patient empowerment (Swedish Coronary Empowerment Scale, SWE-CES) and secondary outcomes General Self-Efficacy Scale (GSES), self-rated health status (EQ-VAS), high-density lipoprotein cholesterol (HDL-C), body mass index (BMI), weight and smoking. Outcomes were adjusted for sociodemographic factors.Results The PBL intervention group resulted in a significant improved change in SWE-CES over the 5-year period (mean (M), 39.39; 95% CI 37.88 to 40.89) compared with the baseline (M 36.54; 95% CI 35.40 to 37.66). PBL intervention group increased HDL-C level (M 1.39; 95% CI 1.28 to 1.50) compared with baseline (M 1.24; 95% CI 1.15 to 1.33) and for EQ-VAS (M 77.33; 95% CI 73.21 to 81.45) compared with baseline (M 68.13; 95% CI 63.66 to 72.59) while these outcomes remained unchanged in the control group. There were no significant differences in BMI, weight or scores on GSES, neither between nor within groups over time. The overall proportion of smokers was significantly higher in the control group than in the experimental group.Conclusion One-year PBL intervention had positive effect on patient empowerment, health status and HDL-C at a 5-year follow-up compared with the control group. PBL education aiming to improve patient empowerment in cardiac rehabilitation should account for sociodemographic factors.Trial registration number NCT01462799.

BackgroundResearch on the use of home telemonitoring data and adherence to it can provide new insights into telemonitoring for the daily management of patients with heart failure (HF). ObjectiveWe described the use of a telemonitoring platform—including remote patient monitoring of blood pressure, pulse, and weight—and the use of the electronic personal health record. Patient characteristics were assessed in both adherent and nonadherent patients to weight transmissions. MethodsWe used the data of the e-Vita HF study, a 3-arm parallel randomized trial performed in stable patients with HF managed in outpatient clinics in the Netherlands. In this study, data were analyzed from the participants in the intervention arm (ie, e-Vita HF platform). Adherence to weight transmissions was defined as transmitting weight ≥3 times per week for at least 42 weeks during a year. ResultsData from 150 patients (mean age 67, SD 11 years; n=37, 25% female; n=123, 82% self-assessed New York Heart Association class I-II) were analyzed. One-year adherence to weight transmissions was 74% (n=111). Patients adherent to weight transmissions were less often hospitalized for HF in the 6 months before enrollment in the study compared to those who were nonadherent (n=9, 8% vs n=9, 23%; P=.02). The percentage of patients visiting the personal health record dropped steadily over time (n=140, 93% vs n=59, 39% at one year). With univariable analyses, there was no significant correlation between patient characteristics and adherence to weight transmissions. ConclusionsAdherence to remote patient monitoring was high among stable patients with HF and best for weighing; however, adherence decreased over time. Clinical and demographic variables seem not related to adherence to transmitting weight. Trial RegistrationClinicalTrials.gov NCT01755988; https://clinicaltrials.gov/ct2/show/NCT01755988

Introduction Thirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physician’s experience, which is why this study is needed. Purpose This study aimed to explore palliative care physicians’ experiences and views of thirst in patients at the end of life. Methods A qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. Results The analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. Conclusions The palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.

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 The accepted use of left ventricular assist device (LVAD) technology as a good alternative for the treatment of patients with advanced heart failure together with the improved survival of the LVAD‐supported patients on the device and the scarcity of donor hearts has significantly increased the population of LVAD‐supported patients. The expected and non‐expected device‐related and patient–device interaction complications impose a significant burden on the medical system exceeding the capacity of the LVAD implanting centres. The ageing of the LVAD‐supported patients, mainly those supported with the ‘destination therapy’ indication, increases the risk for those patients to experience comorbidities common in the older population. The probability of an LVAD‐supported patient presenting with medical emergency to a local emergency department, internal, or surgical ward of a non‐LVAD implanting centre is increasing. The purpose of this trilogy is to supply the immediate tools needed by the non‐LVAD specialized physician: ambulance clinicians, emergency ward physicians, general cardiologists, internists, anaesthesiologists, and surgeons, to comply with the medical needs of this fast‐growing population of LVAD‐supported patients. The different issues discussed will follow the patient's pathway from the ambulance to the emergency department and from the emergency department to the internal or surgical wards and eventually to the discharge home from the hospital back to the general practitioner. In this first part of the trilogy on the management of LVAD‐supported patients for the non‐LVAD specialist healthcare provider, after the introduction on the assist devices technology in general, definitions and structured approach to the assessment of the LVAD‐supported patient in the ambulance and emergency department is presented including cardiopulmonary resuscitation for LVAD‐supported patients.

Abstract The improvement in left ventricular assist device (LVAD) technology and scarcity of donor hearts have increased dramatically the population of the LVAD‐supported patients and the probability of those patients to present to the emergency department with expected and non‐expected device‐related and patient–device interaction complications. The ageing of the LVAD‐supported patients, mainly those supported with the ‘destination therapy’ indication, increases the risk for those patients to suffer from other co‐morbidities common in the older population. In this second part of the trilogy on the management of LVAD‐supported patients for the non‐LVAD specialist healthcare provider, definitions and structured approach to the LVAD‐supported patient presenting to the emergency department with bleeding, neurological event, pump thrombosis, chest pain, syncope, and other events are presented. The very challenging issue of declaring death in an LVAD‐supported patient, as the circulation is artificially preserved by the device despite no other signs of life, is also discussed in detail.

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 The growing population of left ventricular assist device (LVAD)‐supported patients increases the probability of an LVAD‐ supported patient hospitalized in the internal or surgical wards with certain expected device related, and patient‐device interaction complication as well as with any other comorbidities requiring hospitalization. In this third part of the trilogy on the management of LVAD‐supported patients for the non‐LVAD specialist healthcare provider, definitions and structured approach to the hospitalized LVAD‐supported patient are presented including blood pressure assessment, medical therapy of the LVAD supported patient, and challenges related to anaesthesia and non‐cardiac surgical interventions. Finally, important aspects to consider when discharging an LVAD patient home and palliative and end‐of‐life approaches are described.

Objective: To identify the information needs and perceptions of patients regarding the application of virtual reality in pre-surgical patient education. Methods: A qualitative study was conducted between March and July 2020. The study population consisted of a purposive sample of patients scheduled for cardiac surgery from a single institution. Semi-structured individual interviews (n=19) were conducted and analysed using thematic analysis. Results: Patient perceptions regarding virtual reality and information needs related to hospitalisation and surgery could be categorised into three themes: Creating familiarity, contents to explore and challenges and preconditions. Conclusions: Virtual reality technology is a promising tool that can enhance conventional patient education to improve understanding and to potentially reduce concerns and anxieties. The virtual reality environment creates an opportunity for patients to be in control of the timing, quantity, depth and frequency of patient education. A virtual reality education tool should not be a substitute for personal contact with the physician. Innovation: Patient information needs were identified profoundly to the further development of a virtual reality intervention. This intervention aims to educate patients prior to elective cardiac surgery.

More than 500 million people worldwide live with cardiovascular disease (CVD). Health systems today face fundamental challenges in delivering optimal care due to ageing populations, healthcare workforce constraints, financing, availability and affordability of CVD medicine, and service delivery. Digital health technologies can help address these challenges. They may be a tool to reach Sustainable Development Goal 3.4 and reduce premature mortality from non-communicable diseases (NCDs) by a third by 2030. Yet, a range of fundamental barriers prevents implementation and access to such technologies. Health system governance, health provider, patient and technological factors can prevent or distort their implementation. World Heart Federation (WHF) roadmaps aim to identify essential roadblocks on the pathway to effective prevention, detection, and treatment of CVD. Further, they aim to provide actionable solutions and implementation frameworks for local adaptation. This WHF Roadmap for digital health in cardiology identifies barriers to implementing digital health technologies for CVD and provides recommendations for overcoming them.

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 ​

BackgroundThe recognition of a symptom is needed to initiate a decision to engage in a behavior to ameliorate the symptom. Yet, a surprising number of individuals fail to detect symptoms and delay in addressing early warnings of a health problem.PurposeThe aim of this study was to test the hypothesis that symptom recognition mediates the relationship between monitoring for and management of symptoms of a chronic illness.MethodsA secondary analysis of existing cross-sectional data. A sample of 1,629 patients diagnosed with one or more chronic conditions was enrolled in the United States (US) (n = 407), Italy (n = 784) and Sweden (n = 438) between March 2015 and May 2019. Data on self-care monitoring, symptom recognition, and self-care management was assessed using the Self-Care of Chronic Illness Inventory. After confirming metric invariance in cultural assessment, we used structural equation modeling to test a mediation model where symptom recognition was conceptualized as the mediator linking self-care monitoring and self-care management with autonomous (e.g., Change your activity level) and consulting behaviors (e.g., Call your healthcare provider for guidance).ResultsSymptom recognition mediated the relation between self-care monitoring and autonomous self-care management behaviors (β = 0.098, β = 0.122, β = 0.081, p < 0.001 for US, Italy, and Sweden, respectively). No mediation effect was found for consulting self-care management behaviors.ConclusionOur findings suggests that symptom recognition promotes autonomous self-care behaviors in people with a chronic condition. Self-care monitoring directly affects consulting self-care management behaviors but not through symptom recognition. Further research is needed to fully understand the role of symptom recognition in the self-care process.

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.