The long-term effect of an m-health tool on self-care in patients with heart failure: a pre-post interventional study with a mixed-method analysis.

AIMS: The aims of this study were (i) to evaluate the effects of using an m-health tool on self-care behaviour at 3 and 12 months and (ii) to explore the experiences and perceptions of heart failure (HF) patients about the m-health tool. METHODS AND RESULTS: In this pre-post interventional study with a mixed-method analysis, 71 patients diagnosed with HF [49% female, mean age 76.7 years, New York Heart Association (NYHA) II 31%, NYHA III 69%] were enrolled and had the m-health tool installed in their home for 1 year. The tool consisted of a pre-programmed tablet including a weighing scale and interactive education about HF self-care. At baseline, and at 3 and 12 months, self-care was assessed using the European Heart Failure Self-care Behaviour (EHFScB-9) Scale, an eight-item self-administered questionnaire assessing the experiences of the m-health tool. The mean EHFScB-9 at baseline was 63.8 ± 2.8 and it improved to 67.6 ± 7.6 after 3 months (P < 0.05). After 1 year, the score had decreased to 63.2 ± 7.1 (P = 0.68). Most patients rated the tool as 'good', both at 3 months (92%) and after 12 months (93%). Some found the system to be unnecessary to some degree, and this number increased between 3 and 12 months (P < 0.001). Most patients felt that m-health increased their feelings of security, and 85% responded that the system increased their family members' sense of security. CONCLUSION: The m-health tool significantly improved patients' self-care behaviour after 3 months, but this effect did not persist after 1 year. For achieving long-term effects and outcomes, additional and regularly updated self-care support may be needed. REGISTRATION: ClinicalTrials.gov: NCT04955600.

Correction: Expectations of Tele-Yoga in Persons With Long-Term Illness: Qualitative Content Analysis.

[This corrects the article DOI: 10.2196/36808.].

Feasibility, acceptability, and outcome responsiveness of the SYMPERHEART intervention to support symptom perception in persons with heart failure and their informal caregivers: a feasibility quasi-experimental study.

BACKGROUND: Symptom perception is an important process of heart failure (HF) self-care that persons with HF need in order to master self-care management. It also leads to better patient outcomes. Symptom perception consists of body observation and analysis, which are both challenging. We aimed to test the feasibility, acceptability, and outcome responsiveness of a novel intervention (SYMPERHEART) delivered to persons with HF with their informal caregiver. METHODS: We designed SYMPERHEART as a complex evidence-informed education and support intervention targeting body observation and analysis. We conducted a feasibility quasi-experimental study with a single group pre-post-test design. We included three subsamples: persons with HF receiving home-based care, their informal caregivers exposed to SYMPERHEART, and home-care nurses who delivered SYMPERHEART during 1 month. We assessed feasibility by recruitment time, time to deliver SYMPERHEART, eligibility rate, and intervention fidelity. We assessed acceptability by consent rate, retention rate, persons with HF engagement in body observation, and treatment acceptability. Outcome responsiveness was informed by patient-reported (PRO) and clinical outcomes: HF self-care and the informal caregivers' contribution to HF self-care, perception of HF symptom burden, health status, caregivers' burden, and HF events. We performed descriptive analyses for quantitative data and calculated Cohen's d for PROs. A power analysis estimated the sample size for a future full-scale effectiveness study. RESULTS: We included 18 persons with HF, 7 informal caregivers, and 9 nurses. Recruitment time was 112.6 h. The median time to deliver SYMPERHEART for each participant was 177.5 min. Eligibility rate was 55% in persons with HF. Intervention fidelity revealed that 16 persons with HF were exposed to body observation and analysis. Consent and retention rates in persons with HF were 37.5% and 100%, respectively. Participants engaged actively in symptom and weight monitoring. Treatment acceptability scores were high. Symptom perception and informal caregivers' contribution to symptom perception were found to be responsive to SYMPERHEART. We estimate that a sample size of 50 persons with HF would be needed for a full-scale effectiveness study. CONCLUSIONS: SYMPERHEART was found to be feasible and acceptable. This feasibility study provides information for a subsequent effectiveness study. TRIAL REGISTRATION: ISRCTN. ISRCTN18151041 , retrospectively registered on 4 February 2021, ICTRP Search Portal.

Expectations of Tele-Yoga in Persons With Long-Term Illness: Qualitative Content Analysis.

BACKGROUND: Yoga 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. OBJECTIVE: This study aims to explore the expectations of tele-yoga among individuals with long-term illness before starting a tele-yoga intervention. METHODS: The 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. RESULTS: Participants 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. CONCLUSIONS: Expectations 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 REGISTRATION: ClinicalTrials.gov NCT03703609; https://clinicaltrials.gov/ct2/show/NCT03703609.

Experiences of Heart Failure and the Treatment Journey: A Mixed-Methods Study Among Patients with Heart Failure in Sweden.

Purpose: Qualitative studies that highlight the patient perspective of heart failure (HF) and its impact on the lives of patients are limited. Our study objective was to describe the patient's perspective on HF, including the diagnosis, treatment journey and healthcare interactions, and how HF impacts patients' lives and specifically their health-related quality of life (HRQoL) and work capacity. Patients and Methods: This cross-sectional, non-interventional, mixed-methods patient experience study comprised: (i) a quantitative online survey with study-specific questions and assessments of HRQoL and work impairment among 101 patients with HF in Sweden and (ii) 35 qualitative interviews to gain in-depth understanding of the patients' experiences. Results: Patients were found to experience a highly symptomatic and detrimental impact of HF on their HRQoL and work capacity. Fatigue was the most frequently reported symptom, and it was detrimental to all areas of patients' lives limiting them mentally, socially, and physically. Two-thirds of patients were not aware of the type of HF they had, one-third did not check their body weight regularly, and around half did not increase their physical exercise as recommended by both guidelines and healthcare practitioners. Patients preferred specialist to primary care, desired greater access to healthcare, and continuity in whom they interact with in primary care. Conclusion: Patients with HF experience a highly symptomatic burden that affects them physically, mentally, and socially. Our study highlights a major gap in patients' knowledge about HF and HF-related healthcare. These results demonstrate a challenge for the Swedish healthcare system particularly as regards providing patients with continuity, accessibility, and proximity to primary care.

Associations between continuity of care, perceived control and self-care and their impact on health-related quality of life and hospital readmission-A structural equation model.

AIM: The aim of this study is to examine whether a conceptual model including the associations between continuity of care, perceived control and self-care could explain variations in health-related quality of life and hospital readmissions in people with chronic cardiac conditions after hospital discharge. DESIGN: Correlational design based on cross-sectional data from a multicentre survey study. METHODS: People hospitalized due to angina, atrial fibrillation, heart failure or myocardial infarction were included at four hospitals using consecutive sampling procedures during 2017-2019. Eligible people received questionnaires by regular mail 4-6 weeks after discharge. A tentative conceptual model describing the relationship between continuity of care, self-care, perceived control, health-related quality of life and readmission was developed and evaluated using structural equation modelling. RESULTS: In total, 542 people (mean age 75 years, 37% females) were included in the analyses. According to the structural equation model, continuity of care predicted self-care, which in turn predicted health-related quality of life and hospital readmission. The association between continuity of care and self-care was partly mediated by perceived control. The model had an excellent model fit: RMSEA = 0.06, 90% CI, 0.05-0.06; CFI = 0.90; TLI = 0.90. CONCLUSION: Interventions aiming to improve health-related quality of life and reduce hospital readmission rates should focus on enhancing continuity of care, perceived control and self-care. IMPACT: This study reduces the knowledge gap on how central factors after hospitalization, such as continuity of care, self-care and perceived control, are associated with improved health-related quality of life and hospital readmission in people with cardiac conditions. The results suggest that these factors together predicted the quality of life and readmissions in this sample. This knowledge is relevant to researchers when designing interventions or predicting health-related quality of life and hospital readmission. For clinicians, it emphasizes that enhancing continuity of care, perceived control and self-care positively impacts clinical outcomes. PATIENT OR PUBLIC CONTRIBUTION: People and healthcare personnel evaluated content validity and were included in selecting items for the short version.

Development and psychometric properties of a short version of the Patient Continuity of Care Questionnaire.

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.

Implementation of Telemonitoring in Health Care: Facilitators and Barriers for Using eHealth for Older Adults with Chronic Conditions.

Purpose: The retrospective study used a hybrid design aimed to a) describe the implementation process of telemonitoring from stakeholders' perspectives and b) identify facilitators and barriers perceived by the care team. Patients and Methods: Qualitative interview data were analyzed using manifest inductive qualitative content analysis to describe what was perceived as barriers and what facilitated the implementation. Participating healthcare professionals recruited from a multi-professional care team in Sweden. Overall, 14 healthcare professionals comprising 8 assistant nurses, 3 nurses, 1 physiotherapist, 1 occupational therapist, and one general practitioner participated in five interviews. Results: Four categories were derived from the interview analysis: previous experience with digital technology, the need for preparation before implementation, perceptions of using telemonitoring in daily practice from the patient's perspective, and perceptions of the relevance and reasons for applying telemonitoring from the care team's perspective. The identification of stakeholders and the need to plan carefully when proposing the introduction of telemonitoring systems into work practices are both crucial. Conclusion: The attitudes of healthcare professionals can be a significant factor in the acceptance and efficiency of the use of telemonitoring in practice. Therefore, implementing new technology in healthcare should involve healthcare professionals at an early stage to gain common understanding.

Family members' long-term grief management: A prospective study of factors during ongoing palliative care and bereavement.

OBJECTIVES: Up to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement. METHODS: The participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patient's death. RESULTS: The model selection chose 4 demographic and 4 preloss variables: family member's nervousness and stress, the patient's sense of security during palliative care, family members' sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members' continuing bond - internalized and continuing bond - externalized. SIGNIFICANCE OF RESULTS: How family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

Quality of life and family function are poorest when both patients with heart failure and their caregivers are depressed.

AIMS: Patients with heart failure (HF) and their family caregivers commonly experience depressive symptoms associated with low quality of life (QOL) at the individual level. However, there is a lack of knowledge about how QOL and family function are associated with depressive symptoms at the dyad level. The aim of this article is to compare QOL and family function among dyads stratified by depressive symptoms. METHODS AND RESULTS: Outpatients with HF and their primary caregivers completed the Beck Depression Inventory-II for depressive symptoms, the Short Form 36 for physical and mental QOL, and the McMaster Family Assessment Device for a family function. Analysis of variance was used to compare QOL and family function among the four dyad groups. A total of 91 dyads were categorized into four groups: neither member having depressive symptoms (43.9%), only the caregiver having depressive symptoms (13.2%), only the patient having depressive symptoms (23.1%), and both members having depressive symptoms (20.9%). Dyads without depressive symptoms had the highest levels of physical and mental QOL among the groups. The dyads with both members having depressive symptoms had the lowest levels of physical and mental QOL (P < 0.001) and the lowest levels of general family functioning, problem-solving ability, and communication ability (P < 0.001). Intermediate levels of QOL were seen in dyads with only one member having depressive symptoms, and a similar pattern of intermediate scores was found in all three subscales of family function. CONCLUSION: Dyads with both members having depressive symptoms may be at greatest risk of having poor QOL and low family functioning.

Dying within dyads: Stress, sense of security and support during palliative home care.

OBJECTIVES: To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. METHODS: 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. RESULTS: Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. CONCLUSIONS: Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients' and family caregivers' unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.

SYMPERHEART: an intervention to support symptom perception in persons with heart failure and their informal caregiver: a feasibility quasi-experimental study protocol.

INTRODUCTION: Symptom perception in heart failure (HF) has been identified as crucial for effective self-care, and is related to patient and health system outcomes. There is uncertainty regarding the feasibility and acceptability of symptom perception support and doubts regarding how to include informal caregivers. This study aims to test the feasibility, acceptability and outcome responsiveness of an intervention supporting symptom perception in persons with HF and their informal caregiver. METHODS AND ANALYSIS: A feasibility study with a quasi-experimental pretest and post-test single group design is conducted. The convenience sample consists of 30 persons with HF, their informal caregivers and six nurses. SYMPERHEART is an evidence-informed intervention that targets symptom perception by educational and support components. Feasibility is measured by time-to-recruit; time-to-deliver; eligibility rate; intervention delivery fidelity rate. Acceptability is measured by rate of consent, retention rate, treatment acceptability and the engagement in the intervention components. Outcome responsiveness includes: HF self-care (via the Self-care of Heart Failure Index V.7.2); perception of HF symptom burden (via the Heart Failure Somatic Perception Scale V.3); health status (via the Kansas City Cardiomyopathy Questionnaire-12); caregivers' contribution to HF self-care (via the Caregiver Contribution to Self-Care of Heart Failure Index 2); caregivers' burden (via the Zarit Burden Interview). Clinical outcomes include HF events, hospitalisation reason and length of hospital stay. Descriptive statistics will be used to report feasibility, acceptability, patient-reported outcomes (PRO) and clinical outcomes. PRO and caregiver-reported outcome responsiveness will be reported with mean absolute change and effect sizes. ETHICS AND DISSEMINATION: The study is conducted according to the Declaration of Helsinki. The Human Research Ethics Committee of the Canton of Vaud, Switzerland, has approved the study. Written informed consent from persons with HF and informal caregivers are obtained. Results will be published via peer reviewed and professional journals, and further disseminated via congresses. TRIAL REGISTRATION NUMBER: ISRCTN18151041.

A Clinical Tool (CUE-tool) for Health Care Professionals to Assess the Usability and Quality of the Content of Medical Information Websites: Electronic Delphi Study.

BACKGROUND: As patients are increasingly searching for information about their medical condition on the internet, there is a need for health professionals to be able to guide patients toward reliable and suitable information sources on the internet. OBJECTIVE: The aim of the study was to develop a clinical tool for health care professionals to assess the usability and quality of the content of websites containing medical information that could be recommended to patients. METHODS: A 3-round modified electronic Delphi (eDelphi) study was conducted with 20 health care professionals. RESULTS: In round one of the eDelphi study, of the 68 items initially created, 41 items (29 on usability and 12 on content) were rated as important or very important by more than half of the panel and thus selected for further evaluation in round two. In round two, of the 41 items chosen from round 1, 19 were selected (9 on usability and 10 on content) as important or very important by more than half of the panel for further evaluation. As a result of round three, 2 items were combined as a single item, leaving the instrument with 18 items in total (8 on usability and 10 on content). The tool is freely accessible online. CONCLUSIONS: The CUE-tool can be used to (1) evaluate the usability and reliability of the content of websites before recommending them to patients as a good information source; (2) identify websites that do not have reliable content or may be difficult for patients to use; (3) develop quality websites by using the criteria in the CUE-tool; and (4) identify different qualities between different websites.

Perceived Control Prevents Perception of Negative Changes in Life as a Result of Caring for a Patient With Heart Failure.

INTRODUCTION: Family caregivers of patients with heart failure (HF) commonly experience emotional distress and caregiving burden. Despite their caregiving distress, caregivers may experience positive or negative changes in their life compared with before caregiving. Greater perceived control is associated with better health outcomes, but little is known about whether perceived control is related to caregivers' perceptions of positive or negative changes in life, independent of their distress and burden in providing care for patients with HF. The specific aims were to compare emotional distress and caregiving burden between caregivers who perceived positive versus negative changes in life due to caregiving and to examine whether perceived control predicts the perception of positive or negative changes in life while controlling for emotional distress and caregiving burden. METHODS: Primary caregivers of patients with HF (N = 140, 75% women) completed questionnaires about perceived positive or negative changes in life as a result of caregiving, perceived control, depressive symptoms, anxiety, and caregiving burden. Independent t test, χ2, and logistic regressions were used to accomplish specific aims. RESULTS: Compared with caregivers who reported positive changes in life (42%), caregivers who perceived negative changes in life (58%) had higher levels of depressive symptoms, anxiety, and caregiving burden. Lower level of perceived control was an independent predictor of perceived negative changes in life, controlling for age, gender, depressive symptoms, anxiety, and caregiving burden (odds ratio, 0.89; 95% confidence interval, 0.79-0.99; P = .0038). CONCLUSION: Greater perceived control played a protective role for caregivers independent of caregiver burden. Interventions designed to enhance perceived control may improve caregivers' perceptions of changes in their life.

Associations Among Perceived Control, Depressive Symptoms, and Well-being in Patients With Heart Failure and Their Spouses: A Dyadic Approach.

BACKGROUND: High levels of perceived control and lower levels of depressive symptoms are associated with better well-being in both patients with heart failure and their spouses at an individual level. However, there is a knowledge gap about how these individual factors have reciprocal influences on partners' well-being within the patient-spouse dyads. OBJECTIVE: The aims of this study were to examine dyads of patients with heart failure and their spouses on whether the patients' perceived control over the management of heart failure and depressive symptoms predicts their own and their spouses' physical and emotional well-being and to examine whether patients' perceived control predicts their own and their spouses' depressive symptoms. METHODS: A total 155 patient-spouse dyads (patients: 75% male, mean age of 71 years, 53% classified as New York Heart Association III; spouses: 75% female, mean age of 69 years) were recruited from 2 hospital-based outpatient heart failure clinics. Participants completed the Control Attitude Scale, the Beck Depression Inventory, and the Short-Form 36. Dyadic data were analyzed using multilevel regression of the actor-partner interdependence model. RESULTS: Perceived control had an actor effect on emotional well-being only for patients, and there were partner effects of perceived control on emotional well-being for both patients and their spouses. Depressive symptoms exhibited an actor effect on physical and emotional well-being for patients and spouses, but there were no partner effects of depressive symptoms on emotional well-being. Perceived control had partner effects on depressive symptoms for patients and spouses, but an actor effect of depressive symptoms was only found for patients. CONCLUSION: In an interdependent relationship within the patient-spouse dyads, each dyad member's perceived control influenced their partner's emotional well-being as well as depressive symptoms. The findings suggest development of dyadic interventions that can increase perceived control over the heart condition.

Symptom perception in heart failure - Interventions and outcomes: A scoping review.

BACKGROUND: Symptom perception in heart failure has recently been described as essential in the self-care process bridging self-care maintenance and self-care management. Accordingly, symptom perception appears to be critical for improving patient outcomes such as decreased hospital readmission and increased survival. OBJECTIVES: To explore what interventions have been reported on heart failure symptom perception and to describe outcomes responsive to symptom perception. DESIGN: We conducted a scoping review using PRISMA Extension for Scoping Reviews. DATA SOURCES: Structured searches of Medline, PubMed, Embase, CINAHL, PsychINFO, Web of Science, Cochrane, Joanna Briggs Institute and Grey literature databases. REVIEW METHODS: Two authors independently screened references for eligibility. Eligible articles were written in English, French, German, Swedish, Italian or Spanish and concerned symptom perception in adults with heart failure. Data were extracted and charted in tables by three reviewers. Results were narratively summarized. RESULTS: We identified 99 eligible studies from 3055 references. Seven interventional studies targeted symptom perception as the single intervention component. Mixed results have been found: while some reported decreased symptom frequency, intensity and distress, enhanced health-related quality of life, improved heart failure self-care maintenance and management as well as a greater ability to mention heart failure symptoms, others found more contacts with healthcare providers or no impact on anxiety, heart failure self-care nor a number of diary reported symptoms. Additional interventional studies included symptom perception as one component of a multi-faceted intervention. Outcomes responsive to symptom perception were improved general and physical health, decreased mortality, heart failure decompensation, as hospital/emergency visits, shorter delays in seeking care, more consistent weight monitoring, improved symptom recognition as well as self-care management, decreased hospital length of stay and decreased costs. CONCLUSIONS: While many studies allowed to map a comprehensive overview of interventions supporting symptom perception in heart failure as well as responsiveness to outcomes, only a few single component intervention studies targeting symptom perception have been reported and study designs preclude assessing intervention effectiveness. With regard to multiple component interventions, the specific impact of symptom perception interventions on outcomes remains uncertain to date. Well-designed studies are needed to test the effectiveness of symptom perception interventions and to elucidate relationships with outcomes.

Experience of physical activity described by patients with heart failure who have received individualized exercise advice: A qualitative study.

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

Risk factors for hospital readmission in adult patients with heart failure with reduced ejection fraction: a systematic review.

OBJECTIVE: The objective of this review was to identify and synthesize evidence on risk factors associated with hospital readmission within the first year after heart failure hospitalization among patients with heart failure with reduced left ventricular ejection fraction. INTRODUCTION: Heart failure is associated with a high risk of hospital readmission. Readmissions are associated with higher mortality and health care costs. It is a high health care priority to identify vulnerable patients with heart failure who may potentially benefit from targeted personalized care interventions aiming to reduce readmissions. INCLUSION CRITERIA: This review considered studies including adult patients who had heart failure with a reduced left ventricular ejection fraction ≤ 40% who were discharged after a heart failure hospitalization. The authors included studies with experimental and observational designs evaluating risk factors for i) all-cause hospital readmission, ii) heart failure hospital readmission, and iii) composite outcomes within seven, 15, 30, 60, 90, 180, and 365 days after hospital discharge. Composite outcomes included end points where all-cause readmission and/or heart failure readmission were part of a defined end point (i.e. all-cause readmission or mortality; heart failure readmission or mortality; cardiovascular readmission; cardiovascular readmission or mortality; and readmission, mortality, or cardiac transplant). Studies reporting all-cause readmission and/or heart failure readmission as a primary outcome, secondary outcome, or part of a composite outcome were included. METHODS: PubMed, Embase, CINAHL, Cochrane CENTRAL, PsycINFO, OpenGrey, MedNar, DART-Europe, ProQuest Dissertations and Theses, and the Grey Literature Report in Public Health were searched to find both published and unpublished studies in English, Swedish, Norwegian, or Danish from 2000 to June 2018. Study selection, critical appraisal, data extraction, and data synthesis followed the JBI approach for systematic reviews. Statistical pooling was not possible due to clinical and methodological heterogeneity of the studies included and the lack of risk factors reported more than once. A narrative summary of the findings was performed. RESULTS: Fifty-two studies, including one randomized controlled trial and 51 cohort studies with a total of 128,186 participants, were included. Risk factors for readmission were reported for 30-day outcome in 16 studies, 60-day in three studies, 90-day in 15 studies, 180-day in 12 studies, and 365-day outcome in 15 studies. Based on multivariable analyses from 43 cohort studies and results from one randomized controlled trial, the authors identified several factors associated with higher risk of all-cause readmission, heart failure readmission, and composite outcomes (e.g. readmission or death) within 30, 60, 90, 180, and 365 days after discharge for a heart failure hospitalization. CONCLUSIONS: This review provides a comprehensive overview of factors associated with a clinical outcome after a heart failure hospitalization in patients with heart failure with left ventricular ejection fraction ≤ 40%. Owing to the heterogeneity of variables investigated and the lack of comparability of findings, the clinical impact of the identified risk factors remains uncertain. This review highlights research gaps and the need for a standardized way to define and measure all-cause readmission, heart failure readmission, and composite end points in clinical research to improve study quality and enable comparison of findings between studies.

Patients' and Nurses' Experiences and Perceptions of Remote Monitoring of Implantable Cardiac Defibrillators in Heart Failure: Cross-Sectional, Descriptive, Mixed Methods Study.

BACKGROUND: The new generation of implantable cardioverter-defibrillators (ICDs) supports wireless technology, which enables remote patient monitoring (RPM) of the device. In Sweden, it is mainly registered nurses with advanced education and training in ICD devices who handle the arrhythmias and technical issues of the remote transmissions. Previous studies have largely focused on the perceptions of physicians, and it has not been explored how the patients' and nurses' experiences of RPM correspond to each other. OBJECTIVE: Our objective is to describe, explore, and compare the experiences and perceptions, concerning RPM of ICD, of patients with heart failure (HF) and nurses performing ICD follow-up. METHODS: This study has a cross-sectional, descriptive, mixed methods design. All patients with HF and an ICD with RPM from one region in Sweden, who had transitioned from office-based visits to implementing RPM, and ICD nurses from all ICD clinics in Sweden were invited to complete a purpose-designed, 8-item questionnaire to assess experiences of RPM. The questionnaire started with a neutral question: "What are your experiences of RPM in general?" This was followed by one positive subscale with three questions (score range 3-12), with higher scores reflecting more positive experiences, and one negative subscale with three questions (score range 3-12), with lower scores reflecting more negative experiences. One open-ended question was analyzed with qualitative content analysis. RESULTS: The sample consisted of 175 patients (response rate 98.9%) and 30 ICD nurses (response rate 60%). The majority of patients (154/175, 88.0%) and nurses (23/30, 77%) experienced RPM as very good; however, the nurses noted more downsides than did the patients. The mean scores of the negative experiences subscale were 11.5 (SD 1.1) for the patients and 10.7 (SD 0.9) for the nurses (P=.08). The mean scores of the positive experiences subscale were 11.1 (SD 1.6) for the patients and 8.5 (SD 1.9) for the nurses (P=.04). A total of 11 out of 175 patients (6.3%) were worried or anxious about what the RPM entailed, while 15 out of 30 nurses (50%) felt distressed by the responsibility that accompanied their work with RPM (P=.04). Patients found that RPM increased their own (173/175, 98.9%) and their relatives' (169/175, 96.6%) security, and all nurses (30/30, 100%) answered that they found RPM to be necessary from a safety perspective. Most patients found it to be an advantage with fewer office-based visits. Nurses found it difficult to handle different systems with different platforms, especially for smaller clinics with few patients. Another difficulty was to set the correct number of alarms for the individual patient. This caused a high number of transmissions and a risk to miss important information. CONCLUSIONS: Both patients and nurses found that RPM increased assurance, reliance, and safety. Few patients were anxious about what the RPM entailed, while about half of the nurses felt distressed by the responsibility that accompanied their work with RPM. To increase nurses' sense of security, it seems important to adjust organizational routines and reimbursement systems and to balance the workload.

Sense of support within the family: a cross-sectional study of family members in palliative home care.

BACKGROUND: Despite evidence that family members' support to each other can be of importance to its members, there are limited studies of factors related to family members' sense of such support during palliative care. AIM: Based on the family systems approach, we evaluated which factors were associated with family members' sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support. DESIGN: A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care. METHODS: Generalised linear models were used to evaluate individual factors related to family members' sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses. RESULTS: Nineteen variables were identified that were significantly associated with the family members' sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members. CONCLUSIONS: Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.