Symptom characteristics, perceived causal attributions, and contextual factors influencing self-care behaviors: An ecological daily assessment study of adults with chronic illness.

OBJECTIVE: Insights into how symptoms influence self-care can guide patient education and improve symptom control. This study examined symptom characteristics, causal attributions, and contextual factors influencing self-care of adults with arthritis, asthma, chronic obstructive pulmonary disease, diabetes, or heart failure. METHODS: Adults (n = 81) with a symptomatic chronic illness participated in a longitudinal observational study. Using Ecological Daily Assessment, participants described one symptom twice daily for two weeks, rating its frequency, severity, bothersomeness, duration, causes, and self-care. RESULTS: The most frequent symptoms were fatigue and shortness of breath. Pain, fatigue, and joint stiffness were the most severe and bothersome. Most participants engaged in active self-care, but those with fatigue and pain engaged in passive self-care (i.e., rest or do nothing), especially when symptoms were infrequent, mild, somewhat bothersome, and fleeting. In people using passive self-care, thoughts, feelings, and the desire to conceal symptoms from others interfered with self-care. CONCLUSION: Most adults with a chronic illness take an active role in managing their symptoms but some conceal or ignore symptoms until the frequency, severity, bothersomeness, or duration increases. PRACTICE IMPLICATIONS: When patients report symptoms, asking about self-care behaviors may reveal inaction or ineffective approaches. A discussion of active self-care options may improve symptom control.

Usability and feasibility analysis of an mHealth-tool for supporting physical activity in people with heart failure.

BACKGROUND: Physical inactivity and a sedentary lifestyle are common among people with heart failure (HF), which may lead to worse prognosis. On an already existing mHealth platform, we developed a novel tool called the Activity coach, aimed at increasing physical activity. The aim of this study was to evaluate the usability of the Activity coach and assess feasibility of outcome measures for a future efficacy trial. METHODS: A mixed-methods design was used to collect data. People with a HF diagnosis were recruited to use the Activity coach for four weeks. The Activity coach educates the user about physical activity, provides means of registering daily physical activity and helps the user to set goals for the next week. The usability was assessed by analysing system user logs for adherence, reported technical issues and by interviews about user experiences. Outcome measures assessed for feasibility were objective physical activity as measured by an accelerometer, and subjective goal attainment. Progression criteria for the usability assessment and for the proposed outcomes, were described prospectively. RESULTS: Ten people with HF were recruited, aged 56 to 78 with median age 72. Data from nine of the ten study participants were included in the analyses. Usability: The Activity coach was used 61% of the time and during the first week two study participants called to seek technical support. The Activity coach was found to be intuitive and easy to use by all study participants. An increased motivation to be more physically active was reported by six of the nine study participants. However, in spite of feeling motivated, four reported that their habits or behaviours had not been affected by the Activity coach. FEASIBILITY: Data was successfully stored in the deployed hardware as intended and the accelerometers were used enough, for the data to be analysable. One finding was that the subjective outcome goal attainment, was challenging to collect. A proposed mitigator for this is to use pre-defined goals in future studies, as opposed to having the study participants be completely free to formulate the goals themselves. CONCLUSIONS: It was confirmed that the Activity coach was easy to use. Furthermore, it might stimulate increased physical activity in a population of people with HF, who are physically inactive. The outcomes investigated seem feasible to include in a future efficacy trial. TRIAL REGISTRATION: ClinicalTrials.gov identifier: NCT05235763. Date of first registration: 11/02/2022.

Renegotiating identity. A Nordic study of adolescent's experiences of living with a parent having heart disease.

AIM: To explore adolescents' experiences of having a parent with heart disease. DESIGN: This qualitative study was performed with semi-structured individual interviews. METHODS: Interviews were conducted with 33 adolescents between 13 and 19 years old, who either had a mother or father with one of these diagnoses: ischemic heart disease, arrhythmia, heart failure, cardiac arrest or heart valve disease. The parent had been ill for at least 6 months and up to 5 years. The study was carried out in Denmark, Norway and Sweden between 2019 and 2022. The analysis was inspired by Reflexive Methodology. RESULTS: Three central themes emerged: Response to parental heart disease; Growing up ahead of time; and Strategies in a changed life situation. For the adolescents, heart disease was experienced as an acute and lethal disease that put their parents' lives in danger. New routines and roles not only changed everyday life within the family but they also enhanced maturity and appreciation of life. To maintain a balance in life, the adolescents pursued normality and sought a safe space to have a normal youthful life. CONCLUSION: In a period known to be significant for development, life with parental heart disease appeared as a biographical disruption because adolescents renegotiated their identity to manage their new life situation. IMPACT: It is important to help younger family members adapt to parental heart disease by informing them about possible reactions and supporting them in how to adapt to their new life by seeking breaks and normality. PATIENT OR PUBLIC CONTRIBUTION: No patient or public involvement.

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.

Family presence during in-hospital cardiopulmonary resuscitation: effects of an educational online intervention on self-confidence and attitudes of healthcare professionals.

AIMS: Guidelines support family-witnessed resuscitation (FWR) during cardiopulmonary resuscitation in hospital if deemed to be safe, yet barriers amongst healthcare professionals (HCPs) still exist. This study aimed to evaluate the effects of an educational online video intervention on nurses' and physicians' attitudes towards in-hospital FWR and their self-confidence in managing such situations. METHODS AND RESULTS: A pre- and post-test quasi-experimental study was conducted October 2022 to March 2023 at six Swedish hospitals involving the departments of emergency care, medicine, and surgery. The 10 min educational video intervention was based on previous research covering the prevalence and outcome of FWR, attitudes of HCP, patient and family experiences, and practical and ethical guidelines about FWR.In total, 193 accepted participation, whereof 91 answered the post-test survey (47.2%) with complete data available for 78 and 61 participants for self-confidence and attitudes, respectively. The self-confidence total mean scores increased from 3.83 to 4.02 (P < 0.001) as did the total mean scores for attitudes towards FWR (3.38 to 3.62, P < 0.001). The majority (71.0%) had positive views of FWR at baseline and had experiences of in-hospital FWR (58.0%). Self-confidence was highest amongst participants for the delivery of chest compressions (91.2%), defibrillation (88.6%), and drug administration (83.3%) during FWR. Self-confidence was lowest (58.1%) for encouraging and attending to the family during resuscitation. CONCLUSION: This study suggests that a short online educational video can be an effective way to improve HCP's self-confidence and attitudes towards the inclusion of family members during resuscitation and can support HCP in making informed decisions about FWR.

Evaluation of the nurse-assisted eHealth intervention 'eHealth@Hospital-2-Home' on self-care by patients with heart failure and colorectal cancer post-hospital discharge: protocol for a randomised controlled trial.

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

Symptoms and signs in patients with heart failure: association with 3-month hospitalisation and mortality.

OBJECTIVES: To determine the association between symptoms and signs reported in primary care consultations following a new diagnosis of heart failure (HF), and 3-month hospitalisation and mortality. DESIGN: Nested case-control study with density-based sampling. SETTING: Clinical Practice Research Datalink, linked to hospitalisation and mortality (1998-2020). PARTICIPANTS: Database cohort of 86 882 patients with a new HF diagnosis. In two separate analyses for (1) first hospitalisation and (2) death, we compared the 3-month history of symptoms and signs in cases (patients with HF with the event), with their respective controls (patients with HF without the respective event, matched on diagnosis date (±1 month) and follow-up time). Controls could be included more than once and later become a case. MAIN OUTCOME MEASURES: All-cause, HF and non-cardiovascular disease (non-CVD) hospitalisation and mortality. RESULTS: During a median follow-up of 3.22 years (IQR: 0.59-8.18), 56 677 (65%) experienced first hospitalisation and 48 146 (55%) died. These cases were matched to 356 714 and 316 810 HF controls, respectively. For HF hospitalisation, the strongest adjusted associations were for symptoms and signs of fluid overload: pulmonary oedema (adjusted OR 3.08; 95% CI 2.52, 3.64), shortness of breath (2.94; 2.77, 3.11) and peripheral oedema (2.16; 2.00, 2.32). Generic symptoms also showed significant associations: depression (1.50; 1.18, 1.82), anxiety (1.35; 1.06, 1.64) and pain (1.19; 1.10, 1.28). Non-CVD hospitalisation had the strongest associations with chest pain (2.93; 2.77, 3.09), fatigue (1.87; 1.73, 2.01), general pain (1.87; 1.81, 1.93) and depression (1.59; 1.44, 1.74). CONCLUSIONS: In the primary care HF population, routinely recorded cardiac and non-specific symptoms showed differential risk associations with hospitalisation and mortality.

All Else Being Equal: Examining Treatment Bias and Stereotypes Based on Patient Ethnicity and Socioeconomic Status With In-Hospital Cardiac Arrest Clinical Vignettes.

BACKGROUND: Research on ethnic and socioeconomic treatment differences following in-hospital cardiac arrest (IHCA) largely draws on register data. Due to the correlational nature of such data, it cannot be concluded whether detected differences reflect treatment bias/discrimination - whereby otherwise identical patients are treated differently solely due to sociodemographic factors. To be able to establish discrimination, experimental research is needed. OBJECTIVE: The primary aim of this experimental study was to examine whether simulated IHCA patients receive different treatment recommendations based on ethnicity and socioeconomic status (SES), holding all other factors (e.g., health status) constant. Another aim was to examine health care professionals' (HCP) stereotypical beliefs about these groups. METHODS: HCP (N = 235) working in acute care made anonymous treatment recommendations while reading IHCA clinical vignettes wherein the patient's ethnicity (Swedish vs. Middle Eastern) and SES had been manipulated. Afterwards they estimated to what extent hospital staff associate these patient groups with certain traits (stereotypes). RESULTS: No significant differences in treatment recommendations for Swedish versus Middle Eastern or high versus low SES patients were found. Reported stereotypes about Middle Eastern patients were uniformly negative. SES-related stereotypes, however, were mixed. High SES patients were believed to be more competent (e.g., respected), but less warm (e.g., friendly) than low SES patients. CONCLUSIONS: Swedish HCP do not seem to discriminate against patients with Middle Eastern or low SES backgrounds when recommending treatment for simulated IHCA cases, despite the existence of negative stereotypes about these groups. Implications for health care equality and quality are discussed.

Changes over time in patient-reported outcomes in patients with heart failure.

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.

Patterns of self-care decision-making and associated factors: A cross-sectional observational study.

OBJECTIVE: The aim of this study was to identify for the first time patterns of self-care decision-making (i.e. the extent to which participants viewed contextual factors influencing decisions about symptoms) and associated factors among community-dwelling adults with chronic illness. METHODS: This was a secondary analysis of data collected during the development and psychometric evaluation of the 27-item Self-Care Decisions Inventory that is based on Naturalistic Decision-Making (n = 430, average age = 54.9 ±â€¯16.2 years, 70.2 % female, 87.0 % Caucasian, average number of chronic conditions = 3.6 ±â€¯2.8). Latent class mixture modeling was used to identify patterns among contextual factors that influence self-care decision-making under the domains of external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment. Multivariate multinomial regression was used to identify additional socio-demographic, clinical, and self-care behavior factors that were different across the patterns of self-care decision-making. RESULTS: Three patterns of self-care decision-making were identified in a cohort of 430 adults. A 'maintainers' pattern (48.1 %) consisted of adults with limited contextual influences on self-care decision-making except for urgency. A 'highly uncertain' pattern (23.0 %) consisted of adults whose self-care decision-making was largely driven by uncertainty about the cause or meaning of the symptom. A 'distressed concealers' pattern (28.8 %) consisted of adults whose self-care decision-making was highly influenced by external factors, cognitive/affective factors and concealment. Age, education, financial security and specific symptoms were significantly different across the three patterns in multivariate models. CONCLUSION: Adults living with chronic illness vary in the extent to which contextual factors influence decisions they make about symptoms, and would therefore benefit from different interventions.

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

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

Changing health related quality of life and outcomes in heart failure by age, sex and subtype.

Background: There are calls to integrate serial recordings of health related quality of life (HRQoL) into routine care, clinical trials and prognosis. Little is known about the relationship between change in HRQoL and outcomes in heart failure (HF) patients by age, sex and HF subtype. Method: From the Swedish Heart Failure Registry (SwedeHF; 2008-2019), patients were categorised by reduced (<40%, HFrEF), mildly-reduced (40-49%, HFmrEF) and preserved (≥50%, HFpEF) ejection fraction. HRQoL was measured using Euro-QoL-5D visual analogue scale (EQ5D-vas), collected at baseline and 1-year. Baseline EQ5D-vas scores were categorised by: "best" (76-100), "good" (51-75), "bad" (26-50), and "worst" (0-25). Change in EQ5D-vas was categorised as 'no significant change' (<5 points increase/decrease); some worsening (5-9 points decrease); considerable worsening (≥10 points decrease); some improvement (5-9 points increase); considerable improvement (≥10 points increase). Associations with admission and death were estimated and interactions with patient sub-groups tested. Findings: Among 23,553 patients (median age 74 [66-81] years, 8000 [34%] female), baseline EQ5D-vas was worse in older patients, women, and those with HFpEF compared to their respective counterparts. Compared to patients with the "best" EQ5D-vas, the adjusted associations for admission for those with "good", "bad" and "worst" EQ5D-vas were, respectively: HR 1.09 (1.04, 1.14), 1.27 (1.21, 1.33) and 1.39 (1.28, 1.51). Compared to no significant change in EQ5D-vas, the adjusted estimates for admission following some improvement, considerable improvement, some worsening and considerable worsening were, respectively: HR 0.91 (0.82, 1.01), 0.75 (0.70, 0.81), 1.04 (0.92, 1.16) and 1.25 (1.16, 1.35). Results were similar amongst groups and for HF admission and death. Interpretation: Change in HRQoL was an independent indicator of risk of admission and death in people with all HF subtypes, irrespective of age and sex. Funding: NIHR.

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.

The co-design of an online support programme with and for informal carers of people with heart failure: A methodological paper.

AIM: To describe the co-designing process of an online support programme with and for informal carers of people with heart failure. DESIGN: A co-design process built on core concepts and ideas embedded in co-design methodology. DATA SOURCES: Our co-design process included three phases involving 32 informal caregivers and 25 content creators; (1) Identification of topics and content through literature searches, focus group interviews and user group sessions; (2) Development of the online support programme and; (3) Refinement and finalization which included testing a paper prototype followed by testing the online version and testing and approval of the final version of the support programme. OUTCOMES: The co-design process resulted in a support programme consisting of 15 different modules relevant to informal carers, delivered on a National Health Portal. CONCLUSION: Co-design is an explorative process where researchers need to balance a range of potentially conflicting factors and to ensure that the end users are genuinely included in the process. RELEVANCE TO CLINICAL PRACTICE: Emphasizing equal involvement of end users (e.g. carers or patients) in the design and development of healthcare interventions aligns with contemporary ideas of person-centred care and provides a valuable learning opportunity for those involved. Furthermore, a co-designed online support programme has the capacity to be both accessible and meet end users' information and support needs, thereby optimizing their self-care abilities. Additionally, an online support programme provides the opportunity to address current challenges regarding scarce resources and the lack of healthcare personnel. REPORTING METHODS: Consolidated criteria for reporting qualitative research (COREQ). PATIENT OR PUBLIC CONTRIBUTION: Both informal carers and content creators were involved in developing the support programme.

Culture, ethnicity, and socio-economic status as determinants of the management of patients with advanced heart failure who need palliative care: A clinical consensus statement from the Heart Failure Association (HFA) of the ESC, the ESC Patient Forum, and the European Association of Palliative Care.

The delivery of effective healthcare entails the configuration and resourcing of health economies to address the burden of disease, including acute and chronic heart failure, that affects local populations. Increasing migration is leading to more multicultural and ethnically diverse societies worldwide, with migration research suggesting that minority populations are often subject to discrimination, socio-economic disadvantage, and inequity of access to optimal clinical support. Within these contexts, the provision of person-centred care requires medical and nursing staff to be aware of and become adept in navigating the nuances of cultural diversity, and how that can impact some individuals and families entrusted to their care. This paper will examine current evidence, provide practical guidance, and signpost professionals on developing cultural competence within the setting of patients with advanced heart failure who may benefit from palliative care.

Experiences of family-witnessed cardiopulmonary resuscitation in hospital and its impact on life: An interview study with cardiac arrest survivors and their family members.

AIM: To explore experiences of cardiac arrest in-hospital and the impact on life for the patient who suffered the arrest and the family member who witnessed the resuscitation. BACKGROUND: Guidelines advocate that the family should be offered the option to be present during resuscitation, but little is known about family-witnessed cardiopulmonary resuscitation in hospital and the impact on the patient and their family. DESIGN: A qualitative design consisting of joint in-depth interviews with patients and family members. METHODS: Family interviews were conducted with seven patients and their eight corresponding family members (aged 19-85 years) 4-10 months after a family-witnessed in-hospital cardiac arrest. Data were analysed using interpretative phenomenological analysis. The study followed the guidelines outlined in the consolidated criteria for reporting qualitative research (COREQ) checklist. RESULTS: The participants felt insignificant and abandoned following the in-hospital cardiac arrest. Surviving patients and their close family members felt excluded, alone and abandoned throughout the care process; relationships, emotions and daily life were affected and gave rise to existential distress. Three themes and eight subordinate themes were identified: (1) the intrusion of death-powerless in the face of the fragility of life, highlights what it is like to suffer a cardiac arrest and to cope with an immediate threat to life; (2) being totally exposed-feeling vulnerable in the care relationship, describes how a lack of care from healthcare staff damaged trust; (3) learning to live again-making sense of an existential threat, pertaining to the family's reactions to a difficult event that impacts relationships but also leads to a greater appreciation of life and a positive view of the future. CONCLUSION: Surviving and witnessing a cardiac arrest in-hospital is a critical event for everyone involved. Patients and family members are vulnerable in this situation and need to be seen and heard, both in the hospital and after hospital discharge. Consequently, healthcare staff need to show compassion and attend to the needs of the family, which involves continually assessing how family members are coping during the process, and providing support and information during and after resuscitation. RELEVANCE TO CLINICAL PRACTICE: It is important to provide support to family members who witness the resuscitation of a loved one in-hospital. Structured follow-up care is crucial for cardiac arrest survivors and their families. To promote person-centred care, nurses need interprofessional training on how to support family members during resuscitation, and follow-up care focusing on providing resources for multiple challenges faced by survivors (emotional, cognitive, physical) and families (emotional) is needed. PATIENT OR PUBLIC CONTRIBUTION: In-hospital cardiac arrest patients and family members were involved when designing the study.

A multicomponent complex intervention for supportive follow-up of persons with chronic heart failure: a randomized controlled pilot study (the UTILE project).

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

Patient-Reported Status and Heart Failure Outcomes in Asia by Sex, Ethnicity, and Socioeconomic Status.

Background: In heart failure (HF), symptoms and health-related quality of life (HRQoL) are known to vary among different HF subgroups, but evidence on the association between changing HRQoL and outcomes has not been evaluated. Objectives: The authors sought to investigate the relationship between changing symptoms, signs, and HRQoL and outcomes by sex, ethnicity, and socioeconomic status (SES). Methods: Using the ASIAN-HF (Asian Sudden Cardiac Death in Heart Failure) Registry, we investigated associations between the 6-month change in a "global" symptoms and signs score (GSSS), Kansas City Cardiomyopathy Questionnaire overall score (KCCQ-OS), and visual analogue scale (VAS) and 1-year mortality or HF hospitalization. Results: In 6,549 patients (mean age: 62 ± 13 years], 29% female, 27% HF with preserved ejection fraction), women and those in low SES groups had higher symptom burden but lower signs and similar KCCQ-OS to their respective counterparts. Malay patients had the highest GSSS (3.9) and lowest KCCQ-OS (58.5), and Thai/Filipino/others (2.6) and Chinese patients (2.7) had the lowest GSSS scores and the highest KCCQ-OS (73.1 and 74.6, respectively). Compared to no change, worsening of GSSS (>1-point increase), KCCQ-OS (≥10-point decrease) and VAS (>1-point decrease) were associated with higher risk of HF admission/death (adjusted HR: 2.95 [95% CI: 2.14-4.06], 1.93 [95% CI: 1.26-2.94], and 2.30 [95% CI: 1.51-3.52], respectively). Conversely, the same degrees of improvement in GSSS, KCCQ-OS, and VAS were associated with reduced rates (HR: 0.35 [95% CI: 0.25-0.49], 0.25 [95% CI: 0.16-0.40], and 0.64 [95% CI: 0.40-1.00], respectively). Results were consistent across all sex, ethnicity, and SES groups (interaction P > 0.05). Conclusions: Serial measures of patient-reported symptoms and HRQoL are significant and consistent predictors of outcomes among different groups with HF and provide the potential for a patient-centered and pragmatic approach to risk stratification.

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.