Self-care is important for heart failure patients. However, what are the views of patients on their situation when it comes to realizing self-care? The aim of the paper is to investigate the self-care needs of HF patients, by understanding the issues they embrace in their self-care processes. In this paper we make a review of 17 interviews and make a classification of what the needs are for possible information technology support systems. Based on the analysis of these interviews, we identify the diversity of needs in support of activities related to different background conditions and the dynamics of change of learning and changes in the heart failure condition. The contribution of the paper is a framework for understanding the diversity of needs and the specific situations of this group of patients.

The paper deals with the planning of eHealth systems in the area of chronic care from a patient-centred perspective. The particular area is heart failure (HF) and systems that support patients’ possibilities to be active learners during the care processes. A better understanding of this process is hoped to create a basis for the development of appropriate information systems or information technology (IS/IT) support of learning processes. The objective of this paper is the development of a better understanding of the challenges of chronic illness with special focus on HF. The results are presented as a planning framework that guides the choice and design of ICT-based support systems.

BACKGROUND: Over the past decade, the importance of person-centered care has led to increased interest in patient-reported outcome measures (PROMs). In cardiovascular care, selecting an appropriate PROM for clinical use or research is challenging because multimorbidity is often common in patients. The aim was therefore to provide an overview of heart-disease specific PROMs and to compare the content of those outcomes using a bio-psycho-social framework of health.

METHODS: A scoping review of heart disease-specific PROMs, including arrhythmia/atrial fibrillation, congenital heart disease, heart failure, ischemic heart disease, and valve diseases was conducted in PubMed (January 2018). All items contained in the disease-specific PROMs were mapped to WHO's International Classification of Functioning, Disability and Health (ICF) according to standardized linking rules.

RESULTS: A total of 34 PROMs (heart diseases in general n = 5; cardiac arrhythmia n = 6; heart failure n = 14; ischemic heart disease n = 9) and 147 ICF categories were identified. ICF categories covered Body functions (n = 61), Activities & Participation (n = 69), and Environmental factors (n = 17). Most items were about experienced problems of Body functions and less often about patients' daily activities, and most PROMs were specifically developed for heart failure and no PROM were identified for valve disease or congenital heart disease.

CONCLUSIONS: Our results motivate and provide information to develop comprehensive PROMs that consider activity and participation by patients with various types of heart disease.

Background: Nurses represent the largest sector of the workforce caring for people with cardiovascular disease in Europe. Little is known about the post-registration education provided to nurses working within this specialty. The aim of this descriptive cross sectional survey was to describe the structure, content, teaching, learning, assessment and evaluation methods used in post-registration cardiovascular nurse education programmes in Europe.

Method: A 24-item researcher generated electronic questionnaire was sent to nurse representatives from 23 European countries. Items included questions about cardiovascular registered nurse education programmes.

Results: Forty-nine respondents from 17 European countries completed questionnaires. Respondents were typically female (74%) and educated at Masters (50%) or doctoral (39%) level. Fifty-one percent of the cardiovascular nursing education programmes were offered by universities either at bachelor or masters level. The most frequently reported programme content included cardiac arrhythmias (93%), heart failure (85%) and ischaemic heart disease (83%). The most common teaching mode was face-to-face lectures (85%) and/or seminars (77%). A variety of assessment methods were used with an exam or knowledge test being the most frequent. Programme evaluation was typically conducted through student feedback (95%).

Conclusion: There is variability in the content, teaching, learning and evaluation methods in post-registration cardiovascular nurse education programmes in Europe. Cardiovascular nurse education would be strengthened with a stronger focus upon content that reflects current health challenges faced in Europe. A broader view of cardiovascular disease to include stroke and peripheral vascular disease is recommended with greater emphasis on prevention, rehabilitation and the impact of health inequalities.

Purpose: To investigate cardiovascular nurses' experiences of and attitudes towards the presence of family members during resuscitation of adult patients. 

Methods: A 36-item questionnaire exploring the experiences of and attitudes towards family members being present in the resuscitation room was distributed to a convenience sample of nurses attending three national and one international cardiovascular nursing conferences held in Europe during 2007. 

Results: Of 820 questionnaires distributed, 411(50%) completed ones were returned. Of these 411 respondents, 178 (44%) had experienced at least one situation of families being present. Positive (23%) and negative (21%) experiences of family presence were equally distributed. Only 28 (7%) respondents stated that their unit had a protocol covering family presence. Nurses in Ireland (n=30; 59%) and the UK (n=18; 55%) were most likely to have experienced family presence and protocols relating to this were most commonly found in the UK (n=4; 14%). 

Conclusion: Less than half of the included European cardiovascular nurses had experienced a situation of families being present during resuscitation and protocols pertaining to this were rare. There was no clear attitude towards family presence, though experience in nursing made nurses more favourable towards it.

PURPOSE: To describe flow as experienced by people diagnosed with and treated for head and neck cancer.

METHOD: A descriptive design based on a deductive qualitative content analysis was used to explain Csikszentmihalyi's flow theory from the perspective of people living with head and neck cancer. Interviews were conducted with seven participants diagnosed with and treated for different forms and stages of head and neck cancer.

RESULTS: Experiences of flow were associated with people's interests, skill levels and actions involving and creating both happiness and the feeling of something worth living for. Optimal flow was a state of consciousness in which mind and body work together, and the people were completely absorbed in an activity related to nature, hobbies or family. Microflow occurred as part of everyday life, relieving stress and anxiety and helping them to focus on their daily routines. This included humming, listening to the radio or watching TV.

CONCLUSIONS: The people's inner strength and desire to feel better made flow possible, and they used unknown skills that enhanced self-satisfaction. Managing self-care activities increased feelings of control, participation and enjoyment. This calls for person-centred care with a salutogenic approach based on the people's own interests, skill levels and actions; what makes the person feel happy.

Objective: To compare perceptions among continuous positive airway pressure (CPAP) treated patients with obstructive sleep apnoea syndrome (OSAS) and healthcare personnel with regard to informational needs, side-effects and their consequences on adherence.

Methods: A cross-sectional descriptive design was used including 350 CPAP treated OSAS patients from three Swedish hospitals and 105 healthcare personnel from 26 Swedish hospitals. Data collection was performed using two questionnaires covering informational needs, side-effects and adherence to CPAP.

Results: Both groups perceived all surveyed informational areas as very important. Patients perceived the possibilities to learn as significantly greater in all areas (p < 0.001) compared to healthcare personnel, and scored significantly higher regarding positive effects on adherence of information about pathophysiology (p < 0.05), self-care (p < 0.001) and troubleshooting (p < 0.01). A total of 11 out of 15 surveyed side-effects were perceived to be more frequent by healthcare personnel (p < 0.01–p < 0.001). They also scored all side-effects to cause greater problems and decrease the CPAP use to a greater extent (p < 0.001).

Conclusion: Knowledge about these differences between patients and healthcare personnel regarding educational needs, side-effects and their effects on adherence can be important when designing educational programmes to increase CPAP adherence.

Practice implications: Measurement of these parameters before, during and after educational programs are suggested.

Continuous positive airway pressure (CPAP) is the treatment of choice for obstructive sleep apnoea syndrome (OSAS), but side effects are common and long-term adherence low. The Type D (distressed) personality is defined as a combination of negative affectivity and social inhibition. The association of Type D personality with adherence has not been studied in CPAP-treated patients with OSAS. This study aimed to describe the prevalence of Type D personality in OSAS patients with CPAP treatment longer than 6 months and the association with self-reported side effects and adherence. A cross-sectional descriptive design was used. A total of 247 OSAS patients with a mean use of CPAP treatment for 55 months (6-182 months) were included. Data collection was achieved by two questionnaires; the Type D scale 14 (DS14) (Type D personality), SECI (side effects of CPAP), as well as from medical records (clinical variables and objective adherence to CPAP treatment). Type D personality occurred in 30% of the patients with OSAS and significantly (P < 0.05-0.001) increased the perceived frequency and severity of a broad range of side effects. The objective adherence was significantly lower (P < 0.001) for OSAS patients with Type D compared to OSAS patients without Type D, both with regard to a mean use of 4 h per night and 85% of the self-rated sleep time per night. The additional effect of a Type D personality on perceived side effects and adherence to CPAP treatment found in this study could be used by healthcare personnel when evaluating patients waiting for treatment.

BACKGROUND: Sexual problems are common among people with cardiovascular disease. Although clinical guidelines recommend sexual counselling for patients and their partners, there is little evidence on its effectiveness.

OBJECTIVES: To evaluate the effectiveness of sexual counselling interventions (in comparison to usual care) on sexuality-related outcomes in patients with cardiovascular disease and their partners.

SEARCH METHODS: We searched CENTRAL, MEDLINE, EMBASE, and three other databases up to 2 March 2015 and two trials registers up to 3 February 2016.

SELECTION CRITERIA: Randomised controlled trials (RCTs) and quasi-RCTs, including individual and cluster RCTs. We included studies that compared any intervention to counsel adult cardiac patients about sexual problems with usual care.

DATA COLLECTION AND ANALYSIS: We used standard methodological procedures expected by Cochrane.

MAIN RESULTS: We included three trials with 381 participants. We were unable to pool the data from the included studies due to the differences in interventions used; therefore we synthesised the trial findings narratively.Two trials were conducted in the USA and one was undertaken in Israel. All trials included participants who were admitted to hospital with myocardial infarction (MI), and one trial also included participants who had undergone coronary artery bypass grafting. All trials followed up participants for a minimum of three months post-intervention; the longest follow-up timepoint was five months.One trial (N = 92) tested an intensive (total five hours) psychotherapeutic sexual counselling intervention delivered by a sexual therapist. One trial (N = 115) used a 15-minute educational video plus written material on resuming sexual activity following a MI. One trial (N = 174) tested the addition of a component that focused on resumption of sexual activity following a MI within a hospital cardiac rehabilitation programme.The quality of the evidence for all outcomes was very low.None of the included studies reported any outcomes from partners.Two trials reported sexual function. One trial compared intervention and control groups on 12 separate sexual function subscales and used a repeated measures analysis of variance (ANOVA) test. They reported statistically significant differences in favour of the intervention. One trial compared intervention and control groups using a repeated measures analysis of covariance (ANCOVA), and concluded: "There were no significant differences between the two groups [for sexual function] at any of the time points".Two trials reported sexual satisfaction. In one trial, the authors compared sexual satisfaction between intervention and control and used a repeated measured ANOVA; they reported "differences were reported in favour of the intervention". One trial compared intervention and control with a repeated measures ANCOVA and reported: "There were no significant differences between the two groups [for sexual satisfaction] at any of the timepoints".All three included trials reported the number of patients returning to sexual activity following MI. One trial found some evidence of an effect of sexual counselling on reported rate of return to sexual activity (yes/no) at four months after completion of the intervention (relative risk (RR) 1.71, 95% confidence interval (CI) 1.26 to 2.32; one trial, 92 participants, very low quality of evidence). Two trials found no evidence of an effect of sexual counselling on rate of return to sexual activity at 12 week (RR 1.01, 95% CI 0.94 to 1.09; one trial, 127 participants, very low quality of evidence) and three month follow-up (RR 0.98, 95% CI 0.88 to 1.10; one trial, 115 participants, very low quality of evidence).Two trials reported psychological well-being. In one trial, no scores were reported, but the trial authors stated: "No treatment effects were observed on state anxiety as measured in three points in time". In the other trial no scores were reported but, based on results of a repeated measures ANCOVA to compare intervention and control groups, the trial authors stated: "The experimental group had significantly greater anxiety at one month post MI". They also reported: "There were no significant differences between the two groups [for anxiety] at any other time points".One trial reporting relationship satisfaction and one trial reporting quality of life found no differences between intervention and control.No trial reported on satisfaction in how sexual issues were addressed in cardiac rehabilitation services.

AUTHORS' CONCLUSIONS: We found no high quality evidence to support the effectiveness of sexual counselling for sexual problems in patients with cardiovascular disease. There is a clear need for robust, methodologically rigorous, adequately powered RCTs to test the effectiveness of sexual counselling interventions for people with cardiovascular disease and their partners.

Purpose: The purpose of this study was to test the reliability and validity of an existing patient classification instrument in anaesthetic nursing in a new context.

Background: A patient classification system has to be used by many nurses, so consistency in how it is used is important.

Methods: The study was divided into three parts. The first part was intended to measure interreliability using double assessments of 150 anaesthesia cases. In the second part, the anaesthetic nurses carried out the workload and, in part three, content validity was examined using a questionnaire and meetings.

Results: The result showed good to very good consistency across the board in the nurses' assessments, which also included an overall assessment of the workload (r 0,85). The workload showed the highest mean care level for the indicator preparations/surgical position and the lowest for respiration. The questionnaire replies showed that the nurses were positive about workload, but 43.3 per cent thought that the instrument only described part of their work.

Conclusion: The instrument was shown to be of use in different contexts, but the reliability and validation process should continue so as to increase reliability. Clarifying the progression between the different care levels for each indicator in the instrument can be a way of increasing its usefulness in different services. In terms of clinical work, the measurement of workload has started a valuable process of reflection on anaesthetic nursing that helps to enable the nurses to show what they do and why.

Introduction:The demand for percutaneous coronary intervention (PCI) has been steadily increasing along with the number of patients with coronary heart disease (CHD) in China. However, there is a lack of studies investigating health-related quality of life (HRQoL), self-efficacy, and depression among Chinese patients undergoing their first PCI. The aim of this study was to explore the association between depression, self-efficacy, and HRQoL among Chinese patients with CHD undergoing their first PCI.Methods:In this cross-sectional study, 212 Chinese patients with CHD who underwent their first PCI were recruited through convenience sampling from October 2019 to March 2020. HRQoL, self-efficacy, and depression were assessed using the Seattle Angina Questionnaire, Cardiac Self-Efficacy Scale, and Short-Form Cardiac Depression Scale, respectively, along with the collection of patients' sociodemographic and clinical information.Results:Among the 212 participants, the average age was 59.82 years, and 145 (68.4%) were male. The average scores for self-efficacy, depression, and HRQoL were 33.49 (+/- 10.28), 16.14 (+/- 6.12), and 328.33 (+/- 62.55), respectively. Among the 212 patients who underwent PCI, 134 (63.21%) were found to have depression symptoms according to the cutoff score of 14. A higher body mass index, a diagnosis of acute coronary syndrome, fewer years of CHD diagnosis, the absence of symptoms of depression and greater self-efficacy were significantly positively associated with HRQoL. In total, these variables explained 37.2% of the variance in HRQoL.Conclusion:This study revealed that the HRQoL of patients in this group needs to receive more attention. A comprehensive secondary prevention intervention for CHD patients undergoing their first PCI should emphasize mitigating depression and positively influencing their self-efficacy.

Lipoedema is a disease in adipose tissue associated with multiple health problems that negatively impact the quality of life. However, due to body appearance, the disease is frequently misunderstood as lifestyle-induced obesity, and the affected women are at risk of being fat-shamed and lacking prerequisite support from healthcare providers and other people. Although the negative impact lipoedema has on health and social life, research from the affected women´s perspective is relatively sparse. Therefore, we conducted a Swedish national survey to explore healthcare experiences, health-related stigma, and social support among women with lipoedema. 

Methods

An online survey with closed and open questions assessing sociodemographic, lipoedema characteristics, health-care experiences, health-related stigma, and perceived social support was sent out to all Lipoedema Association groups across Sweden. 

Participants

In total, 245 women with lipoedema responded to the survey. The majority of participants were aged 40-59, and over half were in lipoedema stage 3. Most of the women had a combination of lipoedema type 3 and type 4.

Results

The result showed that it often takes decades, including many healthcare visits, from disease onset to diagnosis. Moreover, participants reported an overall significantly lower patient satisfaction with healthcare compared to a general Swedish female population. Especially low scores were found in the dimensions of Emotional support, Continuity and coordination, and Information and knowledge, which related to participants’ dissatisfaction with healthcare providers’ availability, responsiveness, commitment, and compassion for the patient’s worries and needs. Furthermore, compared to a general Swedish female population, women with lipoedema scored significantly more health-related social impairment. When analyzing data for stigma and health-related quality of life, significant correlations across higher levels of stigma and lower physical and social functioning and emotional well-being were found. In this study, participants generally reported a strong perception of social support, with having particularly good support from significant others (i.e., perceived support from a particular person who is not a family member or friend). Moreover, we found that the association between higher levels of social support and better emotional well-being was significant.

Conclusion

The challenges associated with diagnosis delay and the low satisfaction with healthcare underscore an urgent need for healthcare improvements in the management of lipoedema. The impact health-related stigma and social support have on various aspects of functioning and well-being in women with lipoedema is crucial to acknowledge and address in healthcare to enhance the affected women's quality of life. 

Background: Lipoedema is a chronic disease in adipose tissue that almost exclusively affects women during periods of hormonal alterations. Its main symptoms include an abnormal accumulation of subcutaneous fat in the buttock, hips, and legs, which is associated with pain, swelling, and easy bruising. Herein, a grading in three stages is used to determine disease progression. Problematically, lipoedema manifestations are often confused with lifestyle-induced obesity, which is why the various health problems among affected women often remain unrecognized. Overall, research on lipoedema is scarce. As such, this study examined the health, health-related quality of life (HRQOL), and sense of coherence (SOC) among women with lipoedema. Methods: We conducted a national cross-sectional study using an online survey assessing sociodemographic data, lipoedema characteristics, symptom severity, comorbidities, HRQOL (RAND-36), and SOC (SOC-13). In total, 245 women with lipoedema, recruited from all Lipoedema Association groups in Sweden, participated. Data were compiled with descriptive statistics, and mean differences between groups were analysed by using parametric and non-parametric tests. Results: Moderate and severe leg heaviness, pain, numbness, cold skin, feeling cold, easy bruising, and sleep problems were found to occur in all lipoedema stages. Moreover, almost all participants reported having comorbidities. Worse physical health and most substantial limitations in daily life were reported among women with the most progressive lipoedema (i.e., stage 3). Social and emotional functioning and SOC were found to be, on the other hand, primarily related to respondents’ sociodemographic data and their ages at lipoedema onset. Even though approximately 70% of the women had experienced lipoedema onset before age 30, only three (1.6%) had been diagnosed by a healthcare professional before that age. Conclusion: Having lipoedema is associated with several health problems and a lower HRQOL. In addition, the extent of delay in diagnosis within this sample indicates that many women with lipoedema are often underdiagnosed and are left without support from healthcare. These findings call for the need for greater attention on lipoedema. Moreover, further studies on how women with lipoedema manage their health and symptoms, as well as on their experiences of healthcare services and lipoedema treatments, are needed.

Objectives 

Lipedema is associated with multiple health problems which limit daily life. Still, the disease is frequently misunderstood in healthcare, and research from the patient’s perspective is relatively sparse. A Swedish national survey was conducted, to comprehensively examine health and quality of life among women with lipedema. Furthermore, the study explored participants’ self-care, self-reported effects of different treatments, and experiences when seeking healthcare.

Results

In total, 245 women with lipedema responded to the survey. The majority were 40-59 years old, and over half of the participants were in lipedema stage 3. Overall, in most age groups, women with lipoedema scored approximately 25-35 points lower in their physical and mental health than an age-matched general Swedish female population. Moreover, it often took decades from disease onset, including many healthcare visits, to be correctly diagnosed. Compared to a general female population, women with lipedema scored significantly lower on satisfaction with healthcare in dimensions of availability, information and knowledge, Experiences of emotional support, continuity and coordination, respect and treatment, and participation and involvement. Particularly low scores were recorded in participants’ overall impression of healthcare, including expectations of care, perceived efficiency, being cared for, and accessing information about treatment alternatives. Women with lipedema used several different treatments to manage their health problems. Most common were performing low-intensity exercise and using compression garments, of which approximately half of the participants rated as having a good or a very good effect. Less used, but self-reported as more effective, were conservative and surgical treatments performed by healthcare professionals.  

Conclusion

Lipedema has a significant negative impact on health and quality of life. Still, the diagnosis delay is extensive, and women with lipedema generally report low levels of satisfaction with healthcare. Although managing lipedema symptoms with self-care is common, treatments performed in healthcare were identified as having the most positive effects. Unfortunately, these are less likely to be used, suggesting barriers to healthcare. 

Learning objectives

This research aims to contribute to a holistic understanding of lipedema, including the management of lipedema symptoms from the patient’s perspective and the challenges these women face in healthcare. This is essential when implementing effective treatment plans and prioritising healthcare interventions.

At the conclusion of this activity, participants should be able to: 

1. Recognize and describe experiences that women with lipedema have regarding their treatment and healthcare
2. Identify healthcare improvements for women with lipedema

AIM: to replicate and establish the psychometric properties of the 74-item comprehensive Ethos Towards Wellness Questionnaire in a healthy Norwegian population in terms of content and construct validity as well as homogeneity and stability reliability.

METHOD: A questionnaire with a methodological and developmental design was sent on two occasions to 214 healthy middle-aged participants and processed in two phases.

RESULTS: The three life context and the ethos indexes at ordinal scale level showed an overall satisfactory construct validity (communalities > 0.30, factor loadings > 0.30, and factor total variance > 50%). On two occasions 4 weeks apart, reliability in terms of homogeneity (Cronbach's α > .70) and stability (intraclass correlation coefficient > 0.70) were also considered satisfactory for the same four indexes.

CONCLUSIONS: This newly developed and possibly only questionnaire that focuses on "grasping the big human picture," based on both philosophical reasoning and empirical recommendations of wellness, was found to be valid and reliable in the screening and follow-up of wellness and ethos in a healthy Norwegian population.

Background: The supervision process is characterized by differences between the supervisors’ and the students’ expectations before the start of writing a bachelor thesis as well as after its completion. A review of the literature did not reveal any scientifically tested questionnaire for evaluating nursing students’ expectations of the supervision process when writing a bachelor thesis.

Objectives: The aim of the study was to determine the construct validity and internal consistency reliability of a questionnaire for measuring nursing students’ expectations of the bachelor thesis supervision process.

Design & Methods: The study had a developmental and methodological design carried out in four steps including construct validity and internal consistency reliability statistical procedures: construction of the items, assessment of face validity, data collection and data analysis.

Settings & Participants: This study was conducted at a university in southern Sweden, where students on the “Nursing student thesis, 15 ECTS” course were consecutively selected for participation. Of the 512 questionnaires distributed, 327 were returned, a response rate of 64%.

Results: Five factors with a total variance of 74% and good communalities, ≥0.64, were extracted from the 10-item STQ. The internal consistency of the 10 items was 0.68. The five factors were labelled: The nature of the supervision process, The supervisor's role as a coach, The students’ progression to self-support, The interaction between students and supervisor and supervisor competence.

Conclusions: A didactic, useful and secure questionnaire measuring nursing students’ expectations of the bachelor thesis supervision process based on three main forms of supervision was created.

Aim. The aim of this study was to examine the relationship between heart failure and specific cognitive abilities in octogenarians with regard to level and change over time.

Background. Cognitive impairment is influenced by many factors, and the impact of heart failure is debated. Intact cognitive ability is crucial for successful self-care in patients with heart failure. Middle-aged patients with heart failure seem to have an increased risk of cognitive impairment. No studies have examined the association between heart failure and longitudinal cognitive changes in octogenarians (individuals 80 years and older).

Design. A prospective longitudinal design.

Methods. Cognitive tests were carried out five times (1991–2002) in 702 octogenarians from the Swedish Twin Registry, including same-sex twin pairs. The test battery included the measurement of processing speed, visuospatial ability, short-term, episodic and semantic memory. Latent growth curve modelling was employed to measure change and performance over time and compares the group diagnosed with heart failure to individuals without a heart failure diagnosis.

Results. At baseline, the participants’ mean age was 83·5 years, 67% were women and 13% suffered from heart failure. Individuals diagnosed with heart failure scored significantly lower in spatial abilities and episodic memory than participants not diagnosed with heart failure. Moreover, measures of episodic memory declined more over time in individuals diagnosed with heart failure. There were no significant differences between the groups in other cognitive tests.

Conclusion. Spatial problems and episodic memory have implications for everyday life. This might contribute to decreased adherence to prescribed therapy and self-care management and lead to socio-behavioural problems because of an impaired capacity to drive, read and write.

Relevance to clinical practice. Nurses should take into account in their assessment that cognitive impairment may restrain elderly heart failure patient’s ability to make decisions and perform self-care actions. Patient education strategies should also be adapted to cognitive ability.

Background: Several studies describe that patients with heart failure (HF) find it important to discuss prognosis and that they want to be informed about the expectations about the illness progression. However, little is known about their actual preferences for professional communication about prognosis.

Purpose: to explore patient’s perspectives regarding communication with health care professionals about the HF prognosis.

Methods: 15 patients participated in focus group interviews and a further 9 patients completed individual semi-structured interviews. The patients (75% men, 52-87 years of age) were in NYHA I-III, and were not diagnosed with any other major life threatening disease. Data was analysed using thematic analysis to identify and interpret patterns in the data.

Results: One overarching theme was identified: “The tension between hoping for the best and preparing for the worst” with three sub-themes. Ignorance is bliss. Describes how patients preferred to avoid thinking about the HF prognosis because they did not want to lose hope for the future. They lived one day at the time, focusing on here and now, wanting to forget about the illness altogether. Patients also preferred to decide themselves whether they wanted to talk about the prognosis with professionals or not. Nothing but the truth. Describes how patients wanted to know the objective and absolute truth about their illness and its’ prognosis and were afraid to live under false expectations. The truth about their prognosis was that they might die because of their illness. Even though the truth may hurt, they believed that knowing the truth was necessary to live as good as possible. Good news only. Patients described that they knew that HF was a chronic illness but they were ambivalent in their approach towards discussing prognosis. They wanted to know the truth about their prognosis, but at the same time they did not want to know anything since they fear they might hear something they do not want to, as this may hurt. They only wanted to receive “good” and positive information from the professionals, since they perceived such information to be something that they can benefit from.

Conclusions: This study shows that patients have different preferences for communication about prognosis and uses different approaches in order to cope living with a serious condition such as heart failure. Professionals need to respect the strategies a patient uses, and be ready to support the patient according to their needs, preferences and life situation.

Background: To further advance the use of a heart-failure-specific question prompt list (HF-QPL) for communication about prognosis and end-of-life care, knowledge about such communication and the perceptions and experiences of professionals is needed. Objectives: 1. to describe health care professionals’ perceptions of communication about prognosis and end-of-life in heart failure (HF) care, and 2. to describe their experiences of using a HF-QPL. Design: A qualitative design that analyzed material from written assignments of nurses and physicians who were using a HF-QPL while participating in a communication course. Methods: Fifteen health care professionals from different regions in the south of Sweden were included. The data were collected from course assignments on 1. their reflection on the suitable timepoint for talking about prognosis for the first time, 2. their reflection on the HF-QPL, and 3. their experiences of using the HF-QPL in clinical practice. Data were analyzed using thematic analysis. Results: Five overarching themes were identified. The first theme was awareness of professional role responsibilities that described the recognition of different responsibilities in these conversations within the HF team. The second theme described the importance of being optimally prepared, and the third that confidence and skills are required to use the HF-QPL. The fourth theme described the HF-QPL as a bridge in the communication between professionals, patients, and family members. The fifth theme identified challenges using the HF-QPL in HF care. Conclusions: Using a HF-QPL in HF care has the potential to start conversation and facilitate discussion about the HF trajectory.

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.

Aim and objectives

To describe patients’ experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis.

Background

Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs.

Methods

An inductive and exploratory design was used. A total of 24 patients (75% men, 52–87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data.

Findings

Two overarching themes, “The message sent” and “Hoping for the best or preparing for the worst”, each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences.

Conclusion

This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure. 

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. 

BACKGROUND: Many heart failure (HF) patients have palliative care needs, but communication about prognosis and end-of-life care is lacking. HF nurses can play an important role in such communication, but their views on this have rarely been sought.

AIMS: This study aims to describe HF nurses' perspectives on, and daily practice regarding, discussing prognosis and end-of-life care with HF patients in outpatient care. It further aims to explore barriers, facilitators and related factors for discussing these issues.

METHODS: A national survey including nurses from outpatient clinics and primary health care centres was performed. Data was collected using a questionnaire on communication with HF patients about prognosis and end-of-life care.

RESULTS: In total, 111 (82%) of the HF nurses completed the questionnaire. Most of them reported that physicians should have the main responsibility for discussing prognosis (69%) and end-of-life care (67%). Most nurses felt knowledgeable to have these discussions, but 91% reported a need for further training in at least one of the areas. Barriers for communication about prognosis and end-of-life care included the unpredictable trajectory of HF, patients' comorbidities and the opinion that patients in NYHA class II-III are not in the end-of-life.

CONCLUSION: Although HF nurses feel competent discussing prognosis and end-of-life care with the HF patient, they are hesitant to have these conversations. This might be partly explained by the fact that they consider the physician to be responsible for such conversations, and by perceived barriers to communication. This implies a need for clinical policy and education for HF nurses to expand their knowledge and awareness of the patients' possible needs for palliative care.

BACKGROUND: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care.

OBJECTIVE: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education.

METHODS: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis.

RESULTS: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, p<0.001, 13% versus 4%, p<0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role.

CONCLUSIONS: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patient's situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

AIM: The aim of the present study was to explore how young adults with type 1 diabetes (T1D) experienced the transition from paediatric to adult health care services.

DESIGN: A qualitative, explorative design was used.

METHODS: Eleven young adults with T1D receiving adult diabetes care at a hospital in western Norway participated in semi-structured interviews. Data were analysed using Interpretive Description, an inductive approach inspired by grounded theory, ethnography and phenomenology, and specifically designed to explore phenomena in clinical practice aiming to generate new knowledge and skills.

RESULTS: Four main themes regarding the adolescents' experiences of the transfer from paediatric to adult care emerged: (i) limited information about the transition; (ii) transition from frequent, thorough and personal follow-up to a less comprehensive and less personal follow-up; (iii) the importance of being seen as a whole person; (iv) limited expectations of how the health care services were organised.

CONCLUSIONS: The study showed that the existing routines for transfer between paediatric and adult care are not optimal. The participants expressed that they were not prepared for the dissimilarities in follow-up and were predominantly less pleased with the adult care follow-up.

RELEVANCE TO CLINICAL PRACTICE: The findings support a need for structured transition programmes, that is programmes that contribute to young adults with T1D receiving a safe and positive transition at an otherwise demanding life phase. Young peoples' individual needs for the transition to and follow-up in adult care may be promoted by an approach based on person-centred care.

Aims: Improved self-care is the goat of many heart failure (HF) management programmes. The 12-item European Heart Failure Self-Care Behaviour Scale (EHFScB scale) was developed and tested to measure patient self-care behaviours. It is now available in 14 languages. The aim of this study was to further determine reliability and validity of the EHFScB scale. 

Methods and results: Data from 2592 HF patients (mean age 73 years, 63% mate) from six countries were analysed. Internal consistency was determined by Cronbach's alpha. Validity was established by (1) interviews with HF experts and with HF patients; (2) item analysis; (3) confirmatory factor analysis; and (4) analysing the relationship between the EHFScB scale and scales measuring quality of life and adherence. Internal consistency of the 12-item scale was 0.77 (0.71-0.85). After factor analyses and critical evaluation of both psychometric properties and content of separate items, a nine-item version was further evaluated. The reliability estimates for the total nine-item scale (EHFScB-9) was satisfactory (0.80) and Cronbach's alpha varied between 0.68 and 0.87 in the different countries. One reliable subscale was defined (consulting behaviour) with a Cronbach's alpha of 0.85. The EHFScB-9 measures a different construct than quality of life (r = 0.18) and adherence (r = 0.37).

Conclusion: The 12-item EHFScB scale was revised into the nine-item EHFScB-9, which can be used as an internally consistent and valid instrument to measure HF-related self-care behaviour.

Heart failure has a severe impact on different aspects of a patient’s life, including sexual function. Sexual problems are common in heart failure (HF) patients, both in men and women, and are not always adequately addressed and treated in the current health care system. Several factors have been described to be related to sexual problems, such as activity intolerance, psychological factors, physiological factors, cardiac medications, recreational habits and co-morbidity. The current review summarizes knowledge that can help clinicians treat sexual dysfunction in HF patients. After a good assessment, several steps are advised, including improving HF and co-morbid conditions, discussing psychosocial problems, worries and misunderstandings, managing risk factors and considering PDE-5 inhibitors or other libido enhancing agents.

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.

Aims

Exergaming is a new tool to increase physical activity. This study aimed to determine the effects of access to a home‐based exergame (Nintendo Wii) in patients with heart failure (HF) on exercise capacity, self‐reported physical activity and patient‐reported outcome measures.

Methods and results

We enrolled 605 HF patients in New York Heart Association functional class I–IV, independent of ejection fraction, in an international multicentre randomized controlled trial. Patients were randomized to exergame (intervention) or motivational support (control). The primary endpoint was change in submaximal aerobic exercise capacity as measured by the distance walked in 6 min (6MWT) between baseline and 3 months. Secondary endpoints included long‐term submaximal aerobic exercise capacity, muscle function, self‐reported physical activity, exercise motivation, exercise self‐efficacy at 3, 6 and 12 months. At baseline, patients on average walked 403 ± 142 m on the 6MWT. Patients in the exergame group walked further compared to controls at 3 months (454 ± 123 vs. 420 ± 127 m, P = 0.005), at 6 months (452 ± 123 vs. 426 ± 133 m, P = 0.015) and 12 months (456 ± 122 vs. 420 ± 135 m, P = 0.004). However, correcting for baseline 6MWT values by means of a linear mixed‐effects model revealed no main effect for the intervention on 6MWT. Small significant effects on muscle function were found. Statistically significant treatment effects were found for muscle function but after correction for baseline and confounders, only the treatment effect for the heel‐rise left at 6 months was significant (P < 0.05). No treatment effect was found for exercise motivation, exercise self‐efficacy, or self‐reported physical activity.

Conclusion

Exergaming was safe and feasible in patients with HF with different profiles in different health care systems, cultures and climates. However, it was not effective in improving outcomes on submaximal aerobic exercise capacity. Subgroup analysis did not identify specific subgroups benefiting from the intervention.

Aims

Exercise is known to be beneficial for patients with heart failure (HF), and these patients should therefore be routinely advised to exercise and to be or to become physically active. Despite the beneficial effects of exercise such as improved functional capacity and favourable clinical outcomes, the level of daily physical activity in most patients with HF is low. Exergaming may be a promising new approach to increase the physical activity of patients with HF at home. The aim of this study is to determine the effectiveness of the structured introduction and access to a Wii game computer in patients with HF to improve exercise capacity and level of daily physical activity, to decrease healthcare resource use, and to improve self-care and health-related quality of life.

Methods and results

A multicentre randomized controlled study with two treatment groups will include 600 patients with HF. In each centre, patients will be randomized to either motivational support only (control) or structured access to a Wii game computer (Wii). Patients in the control group will receive advice on physical activity and will be contacted by four telephone calls. Patients in the Wii group also will receive advice on physical activity along with a Wii game computer, with instructions and training. The primary endpoint will be exercise capacity at 3 months as measured by the 6 min walk test. Secondary endpoints include exercise capacity at 6 and 12 months, level of daily physical activity, muscle function, health-related quality of life, and hospitalization or death during the 12 months follow-up.

Conclusion

The HF-Wii study is a randomized study that will evaluate the effect of exergaming in patients with HF. The findings can be useful to healthcare professionals and improve our understanding of the potential role of exergaming in the treatment and management of patients with HF.

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.

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 <300 m (n = 79) and >= 300 m (n = 401). Among patients with a baseline 6MWT of >= 300 m, 18% had deteriorated submaximal exercise capacity. In the multiple logistic regression analysis, lower baseline levels of self-reported physical activity [odds ratio (OR) = 0.77, 95% confidence interval (CI) = 0.60-0.97], lower baseline levels of cognitive function (OR = 0.87, 95%CI = 0.79-0.96) were significantly associated with lack of improvement in exercise capacity at 3 months. Not randomized to exergaming (OR = 0.63, 95%CI = 0.37-1.09) was likely (P = 0.097) to be associated with lack of improvement in exercise capacity at 3 months. Among the 79 patients with baseline 6MWT of <300 m, 41% (n = 32) did not improve 6MWT distance at 3 months. Independent predictors for the lack of improvement for 6MWT were New York Heart Association class III/IV (OR = 4.68, 95%CI = 1.08-20.35), higher levels of serum creatinine (OR = 1.02, 95%CI = 1.003-1.03), lower cognitive function (OR = 0.86, 95%CI = 0.75-0.99), and fewer anxiety symptoms (OR = 0.84, 95%CI = 0.72-0.98).

Conclusions

Lower self-reported physical activity and cognitive impairment predict lack of improvement in submaximal exercise capacity in HF patients. Patients who have a worse prognosis (score <300 m at the 6MWT) are often frail and gain less in exercise capacity. These patients may need a more comprehensive approach to have an effect on exercise capacity, including an individually tailored exercise programme with aerobic exercise (if tolerated) and strength exercises.