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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 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 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 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.

Abstract Background Prognostic models developed in general cohorts with a mixture of heart failure (HF) phenotypes, though more widely applicable, are also likely to yield larger prediction errors in settings where the HF phenotypes have substantially different baseline mortality rates or different predictor-outcome associations. This study sought to use individual participant data meta-analysis to develop an HF phenotype stratified model for predicting 1-year mortality in patients admitted with acute HF. Methods Four prospective European cohorts were used to develop an HF phenotype stratified model. Cox model with two rounds of backward elimination was used to derive the prognostic index. Weibull model was used to obtain the baseline hazard functions. The internal-external cross-validation (IECV) approach was used to evaluate the generalizability of the developed model in terms of discrimination and calibration. Results 3577 acute HF patients were included, of which 2368 were classified as having HF with reduced ejection fraction (EF) (HFrEF; EF

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 Background Cardiac rehabilitation is effective after coronary heart disease (CHD). However, risk factors remain, and patients report fear for recurrence during recovery. Problem-based learning is a pedagogical method, where patients work self-directed in small groups with problem solving of real-life situations to manage CHD risk factors and self-care. We aimed to demonstrate the better effectiveness of problem-based learning over home-sent patient information for evaluating long-term effects of patient empowerment and self-care in patients with CHD. Hypothesis tested: One year of problem-based learning improves patients’ empowerment- and self-efficacy, to change self-care compared to 1 year of standardised home-sent patient information after CHD. Methods Patients (N = 157) from rural and urban areas in Sweden between 2011 and 2015 (78% male; age. 68 ± 8.5 years) with CHD verified by percutaneous coronary intervention (PCI) (70.1%) or coronary artery by-pass surgery (CABG) and CABG+PCI or myocardial infarction (29.9%) were randomly assigned to problem-based learning (experimental group; n = 79) or home-sent patient information (controls; n = 78). The problem-based learning intervention consisted of patient education in primary care by nurses tutoring groups of 6–9 patients on 13 occasions over 1 year. Controls received home-sent patient information on 11 occasions during the study year. Results At one-year follow-up, the primary outcome, patient empowerment, did not significantly differ between the experimental group and controls. We found no significant differences between the groups regarding the secondary outcomes e.g. self-efficacy, although we found significant differences for body mass index (BMI) [− 0.17 (SD 1.5) vs. 0.50 (SD 1.6), P = 0.033], body weight [− 0.83 (SD) 4.45 vs. 1.14 kg (SD 4.85), P = 0.026] and HDL cholesterol [0.1 (SD 0.7) vs. 0.0 mmol/L (SD 0.3), P = 0.038] favouring the experimental group compared to controls. Conclusions The problem-based learning- and the home-sent patient information interventions had similar results regarding patient empowerment, self-efficacy, and well-being. However, problem-based learning exhibited significant effects on weight loss, BMI, and HDL cholesterol levels, indicating that this intervention positively affected risk factors compared to the home-sent patient information. Trial registration NCT01462799 (February 2020).

Abstract Background This study aimed to identify factors associated with health-related quality of life (HRQoL) and the burden on the relatives of older people with multi-morbidity. Methods A secondary analysis of baseline data from 296 dyads, including older patients with multimorbidity and their relatives, which were previously collected in a randomized study. The analysis was conducted to select correlated independent variables to enter a final linear regression analysis of two models with different endpoints: the relatives’ HRQoL (EQ5D index) and burden (COPE index: Negative impact scale). Results Sixteen variables correlated with the relatives’ HRQoL, and 15 with the relatives’ burden. Both the HRQoL and burden correlated with both patient and relative variables. A high HRQoL was associated with relatives’ working/studying. A high burden was associated with caring for an older person with changed behaviour. A low burden was associated with the relatives’ high scores on positive values of caring, quality of support and HRQoL. Conclusion Older persons and their relatives should be considered as a unit in the development of support of older people in order to increase the health and quality of life of both groups. To support and protect relatives from a high burden, potential measures could include improving the relative’s HRQoL and strengthening their ability to find positive values in care and strengthening reliable and good support from others. The relatives’ HRQoL explained the variation in the burden. However, the burden did not explain the variation in the HRQoL, which suggests that the relatives’ HRQoL is not so readily affected by their burden, whereas the relatives’ HRQoL can influence their burden. The variables used in the regression analyses where chosen to reflect important aspects of the relatives’ and older persons’ situations. The final models explained 38% of the variation in the relatives’ burden but only 10% of the variation in their HRQoL. This could be important to consider when choosing outcome assessments in future studies.

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 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 Many people living with cardiovascular disease (CVD) are affected by sexual problems associated with the condition. International guidelines recommend all patients with CVD should receive sexual counselling, yet this is rarely provided by health professionals. The current study piloted the Cardiac Health and Relationship Management and Sexuality (CHARMS) intervention, a complex multi-level intervention designed to increase the implementation of sexual counselling guidelines in hospital-based cardiac rehabilitation (CR) in Ireland. Methods The CHARMS intervention, consisting of awareness training and skills development for staff, and education and support for patients, was implemented in two CR centres. Following a repeated measures design, quantitative and qualitative feasibility, fidelity, cost, and outcome data were collected from staff and patients at baseline (T1, pre-intervention), at 3 months post-baseline (T2, post-intervention), and at 6 months post-baseline (T3, post-intervention). Data were organised according to a 14-point reporting framework of methodological issues that should be examined in pilot and feasibility studies. To inform a future definitive trial, potential solutions to identified feasibility issues were generated using the ADePT process for decision-making after pilot and feasibility trials. Results Most elements of the study protocol were executed smoothly, and intervention implementation was successful. Patients’ (N = 42) responses to the intervention were positive. The reporting framework and the ADePT process facilitated the identification of two overarching feasibility problems, as well as solutions to be implemented in a definitive trial: (1) a high level of patient attrition in the pilot study, to be addressed through the use of financial incentives, reducing the length of the patient questionnaire, and providing a telephone survey option; and (2) negative staff perceptions, to be addressed through an augmented staff intervention, reframing ‘sexual counselling’ as ‘sexual education and support’ to fit with professional role perceptions, and reviewing all intervention terminology with a CR staff member to ensure acceptability. Conclusions This article reports the successful piloting of a novel sexual counselling implementation intervention in cardiac rehabilitation. The utilisation of an extended reporting framework and the ADePT process facilitated the identification of adaptations necessary to ensure the feasibility of a definitive trial, thereby maximising methodological transparency.

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.

Abstract Background In managing a life with coronary heart disease and the possibility of planning and following a rehabilitation plan, patients’ empowerment and self-efficacy are considered important. However, currently there is limited data on levels of empowerment among patients with coronary heart disease, and demographic and clinical characteristics associated with patient empowerment are not known. The purpose of this study was to assess the level of patient empowerment and general self-efficacy in patients six to 12 months after the cardiac event. We also aimed to explore the relationship between patient empowerment, general self-efficacy and other related factors such as quality of life and demographic variables. Methods A sample of 157 cardiac patients (78% male; age 68 ± 8.5 years) was recruited from a Swedish hospital. Patient empowerment was assessed using the SWE-CES-10. Additional data was collected on general self-efficacy and well-being (EQ5D and Ladder of Life). Demographic and clinical variables were collected from medical records and interviews. Results The mean levels of patient empowerment and general self-efficacy on a 0–4 scale were 3.69 (±0.54) and 3.13 (±0.52) respectively, and the relationship between patient empowerment and general self-efficacy was weak (r = 0.38). In a simple linear regression, patient empowerment and general self-efficacy were significantly correlated with marital status, current self-rated health and future well-being. Multiple linear regressions on patient empowerment (Model 1) and general self-efficacy (Model 2) showed an independent significant association between patient empowerment and current self-rated health. General self-efficacy was not independently associated with any of the variables. Conclusions Patients with a diagnosis of coronary heart disease reported high levels of empowerment and general self-efficacy at six to 12 months after the event. Clinical and demographic variables were not independently associated with empowerment or low general self-efficacy. Patient empowerment and general self-efficacy were not mutually interchangeable, and therefore both need to be measured when planning for secondary prevention in primary health care. Trial registration NCT01462799.