Psychometric testing of the Care Dependency Scale in patients with heart failure and their caregivers.

AIMS: This study aims to (i) test the validity and reliability of the Care Dependency Scale (CDS) for patients with heart failure (HF) and (ii) test the validity and reliability of the proxy version of the CDS assessing informal caregivers' perception of the dependency level of individuals with HF. METHODS AND RESULTS: Secondary data analysis was conducted of transnational multicentre cross-sectional design study. A convenience sample comprised of HF patients-informal caregivers' dyads in three European countries. The CDS was administered to patients and the proxy version to informal caregivers. Factorial validity was tested for each scale using confirmatory factor analysis. Reliability was evaluated with the composite coefficient and Cronbach's alpha. Construct validity was tested via known group differences. Measurement error was tested to assess responsiveness to changes. A total of 229 patients and 208 caregivers were recruited. Confirmatory factor analysis supported the two-factor structure (Physical Care Dependency and Psychosocial Care Dependency) of the CDS in both HF patients and their caregiver. Reliability estimates were adequate for all reliability coefficients. Construct validity was supported. The measurement error was adequate. CONCLUSION: The scale shows acceptable validity and reliability and can be useful for care dependency assessment of patients with HF and their informal caregivers. Further research is needed for assessing the validity and reliability in other cross-cultural settings. The use of the CDS has the potential to effectively enable the development of pertinent care plans, taking dependency into consideration including the perspective of both members of the dyad as a whole.

Usability of a digital health platform to support home hospitalization in heart failure patients: a multicentre feasibility study among healthcare professionals.

AIMS: Heart failure (HF) is a common cause of mortality and (re)hospitalizations. The NWE-Chance project explored the feasibility of providing hospitalizations at home (HH) supported by a newly developed digital health platform. The aim of this study was to explore the perceived usability by healthcare professionals (HCPs) of a digital platform in addition to HH for HF patients. METHODS AND RESULTS: A prospective, international, multicentre, single-arm interventional study was conducted. Sixty-three patients and 22 HCPs participated. The HH consisted of daily home visits by the nurse and use of the platform, consisting of a portable blood pressure device, weight scale, pulse oximeter, a wearable chest patch to measure vital signs (heart rate, respiratory rate, activity level, and posture), and an eCoach for the patient. Primary outcome was usability of the platform measured by the System Usability Scale halfway and at the end of the study. Overall usability was rated as sufficient (mean score 72.1 ± 8.9) and did not differ between the measurements moments (P = 0.690). The HCPs reported positive experiences (n = 7), negative experiences (n = 13), and recommendations (n = 6) for the future. Actual use of the platform was 79% of the HH days. CONCLUSION: A digital health platform to support HH was considered usable by HCPs, although actual use of the platform was limited. Therefore, several improvements in the integration of the digital platform into clinical workflows and in defining the precise role of the digital platform and its use are needed to add value before full implementation. REGISTRATION: clinicaltrials.gov NCT04084964.

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.

Burden among informal caregivers of individuals with heart failure: A mixed methods study.

AIMS: To develop a comprehensive understanding of caregiver burden and its predictors from a dyadic perspective. METHOD: A convergent mixed methods design was used. This study was conducted in three European countries, Italy, Spain, and the Netherlands. A sample of 229 HF patients and caregivers was enrolled between February 2017 and December 2018 from the internal medicine ward, outpatient clinic, and private cardiologist medical office. In total, 184 dyads completed validated scales to measure burden, and 50 caregivers participated in semi-structured interviews to better understand the caregiver experience. The Care Dependency Scale, Montreal Cognitive Assessment, and SF-8 Health Survey were used for data collection. Multiple regression analysis was conducted to identify the predictors and qualitative content analysis was performed on qualitative data. The results were merged using joint displays. RESULTS: Caregiver burden was predicted by the patient's worse cognitive impairment, lower physical quality of life, and a higher care dependency perceived by the caregivers. The qualitative and mixed analysis demonstrated that caregiver burden has a physical, emotional, and social nature. CONCLUSIONS: Caregiver burden can affect the capability of informal caregivers to support and care for their relatives with heart failure. Developing and evaluating individual and community-based strategies to address caregiver burden and enhance their quality of life are warranted.

Perception and Challenges of Time Management for Caregivers of People with Heart Failure: A Qualitative Study.

BACKGROUND: Informal caregivers contribute substantially to the self-care of people with heart failure (HF) by helping with concrete and interpersonal tasks. Time perception and management are essential issues among caregivers. However, investigators have not explored this topic in caregivers of people with HF. OBJECTIVES: The aim of this study was to describe the perceptions and challenges of the time management experience among caregivers who support the self-care efforts of their relatives with HF. METHODS: Adult informal caregivers of patients with HF, taking care of the patient for at least 3 months and without cognitive limitations, were recruited from Spain, Italy, and the Netherlands. Data were collected using semistructured interviews. Maryring's qualitative content analysis strategy with both a deductive and an inductive approach was used for analysis. RESULTS: We enrolled 50 participants (20 Italians, 19 Spanish, and 11 Dutch). Caregivers had a mean (SD) age of 62.8 (12.8) years and were mostly female (84%). They dedicated 31.2 (SD, 21.7) hours per week to providing caring activities for their patients. After extracting 33 codes from their qualitative interview data, we summarized them into 8 categories and identified 4 main themes: (1) time for yourself, (2) house management, (3) time for the patient (dedicated to directing care), and (4) time for own socialization. CONCLUSION: Caregivers navigate the complexity of time management by balancing dedicated time for supporting patients with HF and their own personal time.

Challenges in heart failure care in four European countries: a comparative study.

BACKGROUND: In Europe, more than 15 million people live with heart failure (HF). It imposes an enormous social, organizational and economic burden. As a reaction to impending impact on healthcare provision, different country-specific structures for HF-care have been established. The aim of this report is to provide an overview and compare the HF-care approaches of Germany, Ireland, the Netherlands and the UK, and to open the possibility of learning from each other's experience. METHODS: A mixed methods approach was implemented that included a literature analysis, interviews and questionnaires with HF-patients and caregivers, and expert interviews with representatives from healthcare, health service research and medical informatics. RESULTS: The models of HF-care in all countries analyzed are based on the European Society of Cardiology guidelines for diagnosis and treatment of HF. Even though the HF-models differed in design and implementation in practice, key challenges were similar: (i) unequal distribution of care between urban and rural areas, (ii) long waiting times, (iii) unequal access to and provision of healthcare services, (iv) information and communication gaps and (v) inadequate implementation and financing of digital applications. CONCLUSION: Although promising approaches exist to structure and improve HF-care, across the four countries, implementation was reluctant to embrace novel methods. A lack of financial resources and insufficient digitalization making it difficult to adopt new concepts. Integration of HF-nurses seems to be an effective way of improving current models of HF-care. Digital solutions offer further opportunities to overcome communication and coordination gaps and to strengthen self-management skills.

Integrating avatar technology into a telemedicine application in heart failure patients : A pilot study.

BACKGROUND: Heart failure is a severe condition and telemedicine can improve the care of heart failure. Many patients are unable to use telemedicine applications due to visual impairment and limited health-related literacy. Avatar technology might help to overcome these limitations. METHODS: A telemedicine application was combined with a nurse avatar and offered to heart failure outpatients for 3 months. System usability and patient satisfaction were evaluated monthly by the system usability score (maximum score=100) and the patient satisfaction scale (maximum score=50). RESULTS: In total, 37 heart failure patients were enrolled. The mean system usability score after 1 month was 73 (standard deviation=24) and 72 (standard deviation=10) after 3 months of follow-up, which was not significantly different (p = 0.40). The mean patient satisfaction scale after 1 month was 42 (standard deviation=5) and 39 (standard deviation=8) after 3 months, which was not significantly different (p = 0.10). CONCLUSION: A nurse look-a-like avatar integrated into a telemedicine application was positively assessed by heart failure patients. Future studies are warranted to clarify the role of avatar technology in telemedicine.

Bringing the hospital to home: Patient-reported outcome measures of a digital health-supported home hospitalisation platform to support hospital care at home for heart failure patients.

Background: Hospitalisations for heart failure are frequent and costly, linked with a lower quality of life, and lead to higher morbidity and mortality. Home hospitalisation interventions could be a substitute for in-hospital stays to reduce the burden on patients. The current study aims to investigate patient-reported satisfaction and usability in combination with the safety of a digital health-supported home hospitalisation intervention for heart failure patients. Methods: We conducted an international, multicentre, single-arm, interventional study to investigate the feasibility and safety of a digital health-supported home hospitalisation platform. Patients with acute decompensation of known and well-assessed chronic heart failure with an indication for hospital admission were included. The primary outcome was patient satisfaction. Secondary outcomes were usability, adherence, and safety. Results: A total number of 66 patients were included, of which the data of 65 patients (98.5%) was analysed. A total of 86.1% of patients reported being very satisfied or totally satisfied. No patients reported to be not satisfied with the home hospitalisation intervention. The patients reported a sufficient usability score (mean score: 75.8% of 100%) for the digital health-supported home hospitalisation platform. The adherence to the daily measurements of blood pressure and weight was very high, whereas the adherence to the daily interaction with the eCoach was lower (69.3%). In 7 patients (10.8%), a conversion from home hospitalisation to regular hospitalisation was needed. Furthermore, 6 patients (9.2%) had rehospitalisation within 30 days after the end of the home hospitalisation intervention. Conclusion: A digitally supported home hospitalisation intervention is feasible. This study demonstrates high patient satisfaction and sufficiently high usability scores. The safety outcomes are comparable with traditional heart failure hospitalisations. This indicates that digitally supported home hospitalisation could be an alternative to in-hospital care for all age groups, yet further research is needed to prove the (cost-) effectiveness.

What kind of patient education and self-care support do patients with heart failure receive, and by whom? Implementation of the ESC guidelines for heart failure in three European regions.

BACKGROUND: In order to manage Heart Failure (HF) properly, both pharmacological and non-pharmacological interventions including patient education and self-care (SC) support are important. Appropriate health care (HC) professional support is necessary to improve patient SC-skills. However, little is known which HC-professionals deliver specific education and support in daily HF-care. OBJECTIVES: To describe patient-education and SC-support as perceived by different HC-professionals in three neighboring North-West European regions: Maastricht(the Netherlands), Noorder-Kempen(Belgium), Aachen (Germany). METHODS: Semi-structured interviews with cardiologists, HF-nurses and general practitioners (GPs) were performed, followed by qualitative content analysis with a five-step approach: 1) familiarization with data, 2) initial coding with an a-priori code manual, 3) structuring of data in main themes, 4) revision and recoding of initial codes and 5) synthesizing codes in main themes. RESULTS: The sample consisted of 15 cardiologists, 35 GPs and 8 HF-nurses. All interviewed HC-professionals provide HF patient-education, yet, the extent differs between them. Whereas HF-nurses identify patient-education and SC-support as one of their main tasks, physicians report that they provide little education. Moreover, little patient education takes place in primary care; with almost none of the GPs reporting to educate patients about SC. GPs in region 2 refer HF-patients to their practice nurse for education and SC-support. None of the HC-professionals reported to provide patients with all key-topics for patient education and SC-support as defined by the ESC. CONCLUSION: HF nurses consider patient-education and SC-support as one of their main tasks, whereas physicians pay limited attention to education. In none of the three regions, all recommended topics are addressed.

The changing role of patients, and nursing and medical professionals as a result of digitalization of health and heart failure care.

AIM: The aim of the study is to discuss the changing role of patients, nurses and doctors in an era of digital health and heart failure care. BACKGROUND: With a growing demand for heart failure care and a shortage of health care professionals to meet it, digital technologies offer a potential solution to overcoming these challenges. EVALUATION: In reviewing pertinent research evidence and drawing on our collective clinical and research experiences, including the co-design and development of an autonomous remote system, DoctorME, we offer some reflections and propose some practical suggestions for nurturing truly collaborative heart failure care. KEY ISSUES: Digital health offers real opportunities to deliver heart failure care, but patients and health care professionals will require digital skills training and appropriate health services technological infrastructure. CONCLUSIONS: Heart failure care is being transformed by digital technologies, and innovations such as DoctorME have profound implications for patients, nurses and doctors. These include major cultural change and health service transformation. IMPLICATIONS FOR NURSING MANAGEMENT: Nurse managers should create inclusive and supportive working environments where collaborative working and digital technologies in heart failure care are embraced. Nurse managers need to recognize, value and communicate the importance of digital health in heart failure care, ensuring that staff have appropriate digital skills training.

Needs and problems related to sociodemographic factors of informal caregiving of people with heart failure: A mixed methods study in three European countries.

AIMS: To explore caregivers' needs and problems in three European countries and associate the clusters of caregivers' needs with their sociodemographic characteristics. DESIGN: A qualitative focused mixed methods design was used. METHODS: In total, 52 caregivers of heart failure (HF) people were interviewed in three European countries between March 2017 and December 2018. Transcripts were analysed using the seven-phase method of the exploratory multidimensional analysis according to Fraire with Reinert lexical classes findings were organized in dendrograms. Mayring's content analysis was also performed. RESULTS: Three clusters of caregivers were identified: spouses, adult children and non-family members. Caregivers not only provide HF patients with vital unpaid support for their physical and emotional needs, but they are continually trying to cope with their social isolation and deteriorating health. CONCLUSIONS: Informal caregiving emerged as a complex process influenced by various sociodemographic factors. Gender, relationship type and economic status are the important factors to be considered planning to develop approaches to address the needs of caregivers serving people with heart failure. IMPACT: A comprehensive understanding of the nature of informal caregiving of individuals with heart failure, the complexity of the real-world sociodemographic and cultural factors is warranted. The use of the EMDA method gave us the possibility of processing large masses of qualitative data through rapid, complex calculations. In detail, AATD allowed us to study in deep the significant fuzziness of what caregivers expressed and to analyse the content of the entire interviews and to produce global knowledge by using multi-dimensional statistical methods to grasp the fundamental sense of the interviews, beyond the simple words. Three clusters were identified in the samples, including spouses, adult children and non-family members. This study demonstrated that some sociodemographic characteristics could lead to everyday needs. Therefore, these demographic characteristics should be considered in developing targeted interventions. The research was conducted in Europe, but the technique shown can be replicated everywhere. The findings not only impact nursing but can be extended to all those stakeholders who concur with a public health educational mission. PATIENT OR PUBLIC CONTRIBUTION: Carers were involved in this study after the discharge of their loved ones or at the time of the outpatient visit. They were involved after they had been observed in their dynamics of involvement in caring of the familiars or friends with heart failure.

From guideline to daily practice: Implementation of ESC-guidelines considering multidisciplinary and non-pharmacological care in heart failure in three ESC member states, a case study.

INTRODUCTION: To alleviate the burden of Heart Failure (HF), the European Society of cardiology developed guidelines (ESC-guidelines) to optimise HF-diagnosis and treatment. These guidelines state that optimal HF-care is organised in a multidisciplinary programme in which pharmacological and non-pharmacological treatment is offered. Research has proven that multidisciplinary programmes and effective self-care behaviour significantly reduce HF-mortality and (re)hospitalisation, yet little is known about implementation of these ESC-guidelines. Therefore, the INTERACT study investigated current HF-care processes and guideline adherence in three North-West European regions: Maastricht (the Netherlands), Aachen (Germany) and Noorder-Kempen (Belgium). METHODS: A case-study approach was adopted to study local implementation of ESC-guidelines considering non-pharmacological- and multidisciplinary care. National guidelines and local protocols were collected and studied to investigate the level of agreement with and implementation of ESC-guidelines. A matrix was developed to analyse the content of national and local guidelines and protocols in terms of non-pharmacological and multidisciplinary care. RESULTS: All national organisations promote ESC guidelines, and some developed additional national guidelines. In region A, B and C patients receive multidisciplinary care in hospital based HF-outpatient clinics. Moreover, region B and C patients benefit from either structural (region B) or project based (region C) integrated care, in which specialist- and primary care work together to provide seamless care for HF-patients. However, in region A this seamless integrated care remains to be implemented. CONCLUSION: Although ESC-guidelines recommend clearly considering Multidisciplinary- and non-pharmacological care implementation may differ between regions.

What to consider when implementing a tool for timely recognition of palliative care needs in heart failure: a context-based qualitative study.

BACKGROUND: Needs assessment tools can facilitate healthcare professionals in timely recognition of palliative care needs. Despite the increased attention for implementation of such tools, most studies provide little or no attention to the context of implementation. The aim of this study was to explore factors that contribute positively and negatively to timely screening of palliative care needs in advanced chronic heart failure. METHODS: Qualitative study using individual interviews and focus groups with healthcare professionals. The data were analysed using a deductive approach. The Consolidated Framework for Implementation Research was used to conceptualise the contextual factors. RESULTS: Twenty nine healthcare professionals with different backgrounds and working in heart failure care in the Southern and Eastern parts of the Netherlands participated. Several factors were perceived to play a role, such as perception and knowledge about palliative care, awareness of palliative care needs in advanced chronic heart failure, perceived difficulty when and how to start palliative care, limited acceptance to treatment boundaries in cardiology, limited communication and collaboration between healthcare professionals, and need for education and increased attention for palliative care in advanced chronic heart failure guidelines. CONCLUSIONS: This study clarified critical factors targeting patients, healthcare professionals, organisations to implement a needs assessment tool for timely recognition of palliative care needs in the context of advanced chronic heart failure. A multifaceted implementation strategy is needed which has attention for education, patient empowerment, interdisciplinary collaboration, identification of local champions, chronic heart failure specific guidelines and culture.

Informal caregivers of people with heart failure and resilience: A convergent mixed methods study.

AIM: To develop a comprehensive understanding of resilience and its associated factors among informal caregivers of people with heart failure. DESIGN: Transnational multicentre convergent mixed methods approach. METHODS: This study was conducted in three European countries: Italy, Spain and the Netherlands; during February 2017 and December 2018. In total, 195 caregivers completed the Connor-Davidson Resilience Scale, Caregiver Burden Inventory and Hospital Anxiety and Depression Scale. From a nested sample 50 caregivers participated in semi-structured face-to-face interviews. Data were analysed using qualitative content analysis, multiple regression and joint displays. RESULTS: The caregivers' mean age was over 60 years. The quantitative results showed that caregivers experienced anxiety and depression regardless of a good score of resilience and moderate level of burden. Regression analysis showed that the resilience was associated with caregiver depression. From qualitative findings three resilience inhibiting (psychological outlook, physical weariness and affective state) and two promoting factors (community interconnectedness and self-comforting activities) were generated. Mixed analysis confirmed that depression decreased caregivers' resilience. CONCLUSIONS: Caregivers of people with heart failure experience continuous stress and anxiety resulting in reduced resilience. Collaborative efforts are needed to build multifaceted interventions and programs to enhance caregivers' resilience by targeting the factors identified in this study. IMPACT: The quality of informal caregiving is affected by the resilience of caregivers. No research has explored the resilience levels and its factors in this population. Depression, psychological outlook, physical weariness and affective state are negative factors of caregivers' resilience. Personal strategies combined with social and community support and belongingness enhance caregivers' resilience. Community care organizations and hospitals could establish alliances to develop programs for enhancing caregivers' resilience.

Prognostic value of signs and symptoms in heart failure patients using remote telemonitoring.

INTRODUCTION: Heart failure is a serious burden on health care systems due to frequent hospital admissions. Early recognition of outpatients at risk for clinical deterioration could prevent hospitalization. Still, the role of signs and symptoms in monitoring heart failure patients is not clear. The heart failure coach is a web-based telemonitoring application consisting of a 9-item questionnaire assessment of heart failure signs and symptoms and developed to identify outpatients at risk for clinical deterioration. If deterioration was suspected, patients were contacted by a heart failure nurse for further evaluation. METHODS: Heart failure coach questionnaires completed between 2015 and 2018 were collected from 287 patients, completing 18,176 questionnaires. Adverse events were defined as all-cause mortality, heart failure- or cardiac-related hospital admission or emergency cardiac care visits within 30 days after completion of each questionnaire. Multilevel logistic regression analyses were performed to assess the association between the heart failure coach questionnaire items and the odds of an adverse event. RESULTS: No association between dyspnea and adverse events was observed (odds ratio 1.02, 95% confidence interval 0.79-1.30). Peripheral edema (odds ratio 2.21, 95% confidence interval 1.58-3.11), persistent chest pain (odds 2.06, 95% confidence interval 1.19-3.58), anxiety about heart failure (odds ratio 2.12, 95% confidence interval 1.44-3.13), and extensive struggle to perform daily activities (odds ratio 2.23, 95% confidence interval 1.38-3.62) were significantly associated with adverse outcome. DISCUSSION: Regular assessment of more than the classical signs and symptoms may be helpful to identify heart failure patients at risk for clinical deterioration and should be an integrated part of heart failure telemonitoring programs.

A Home Hospitalisation Strategy for Patients with an Acute Episode of Heart Failure Using a Digital Health-Supported Platform: A Multicentre Feasibility Study - A Rationale and Study Design.

BACKGROUND: Heart failure (HF) is a common cause of hospitalisation and mortality in elderly. The frequent rehospitalisations put a serious burden on patients, health-care budgets, and health-care capacity. Frequent hospital admissions are also associated with a substantial additional hazard for serious complications and reduced quality of life. The NWE-Chance project will explore the feasibility and scalability of providing home hospitalisation supported by a newly developed digital health-supported platform and daily visits of specialised nurses. METHODS/DESIGN: Hundred patients with chronic HF will be recruited over a 1-year period. The digital health-supported home hospitalisation strategy will be tested in 3 hospitals with different experience in delivering home hospitalisation: Isala Zwolle, Maastricht UMC+, both in The Netherlands, and Jessa Hospital, Hasselt in Belgium. The home hospitalisation intervention will have a maximal duration of 14 days. Feasibility will be measured with acceptability, satisfaction, and usability questionnaires for patients, nurses, and physicians. Furthermore, safety and costs will be assessed for 30 days after the start of the home hospitalisation intervention. DISCUSSION: The NWE-Chance project will be one of the first studies to examine the feasibility of a digital health-supported home hospitalisation platform for HF patients. It has the potential to augment current standard HF care and quality of life of HF patients and to innovate the standard HF care to potentially lower the hospitalisation-related complications, the burden of HF on health-care systems, and to potentially implement more patient-centred care strategies.

Development and psychometric testing of the European Heart Failure Self-Care behaviour scale caregiver version (EHFScB-C).

BACKGROUND: The European Heart Failure Self-Care Behaviour Scale (EHFScBS) is used worldwide to measure heart failure (HF) patient self-care, but a caregiver version does not exist. OBJECTIVE: To develop and test the European HF Self-Care Behaviour Scale for Caregivers (EHFScBS-C) in a population of informal caregivers of HF patients. METHODS: The EHFScBS-C was derived from the EHFScBS to measure the extent to which caregivers contribute to HF patient self-care. The EHFScBS-C was developed in English and then translated into Italian, Spanish and Dutch, after which it was back-translated. EHFScBS-C data were collected from 193 HF caregivers enrolled in Italy, Spain and the Netherlands. RESULTS: Exploratory factor analysis revealed two factors with supportive fit indices (CFI = 0.990; RMSEA = 0.048): caregivers' contributions to HF self-care related to medical issues, and caregivers' contributions related to lifestyle. Internal consistency reliability was supported as well (Cronbach's alpha 0.90 for the overall scale). Construct validity was demonstrated with significant correlations with the Caregiver Preparedness Scale. CONCLUSION AND PRACTICE IMPLICATIONS: The EHFScBS-C has adequate validity and reliability for its use in clinical practice and research to measure the extent to which caregivers contribute to HF patient self-care. The EHFScBS-C can be used in combination with the EHFScBS to conduct dyadic studies.

Tools to help healthcare professionals recognize palliative care needs in patients with advanced heart failure: A systematic review.

BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure. AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure. DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described. DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included. RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess. CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.

Professionals guidance about palliative medicine in chronic heart failure: a mixed-method study.

INTRODUCTION: Healthcare professionals (HCPs) experience difficulties in timely recognising and directing palliative care (PC) needs of their patients with chronic heart failure (CHF). The aim of this study was to develop a comprehensive tool to enable HCPs in timely recognising and directing PC needs in CHF. METHODS: A four-stage mixed-method study was performed. Stage 1: identification of needs and questions of patients and families; stage 2: prioritisation and refinement of the needs and questions; stage 3a: testing and online feedback on V.1; stage 3b: selecting and refining care recommendations; stage 4: testing and review of V.2. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. In total, 16 patients, 12 family members and 54 HCPs participated. RESULTS: A comprehensive set of 13 PC needs was identified, redefined and tested. The resulting tool, called Identification of patients with HeARt failure with PC needs (I-HARP), contains an introduction prompt with open questions to start the conversation, 13 closed screening questions with additional in-depth questions, and recommendations on actions for identified needs. CONCLUSION: I-HARP contains an evidence-based set of questions and palliative CHF care suggestions for HCPs in the Netherlands. The resulting tool, approved by HCPs, patients and family members, is a promising guidance for HCP to timely recognise and direct PC needs in CHF.