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1.
  • Ben Avraham, Binyamin, et al. (författare)
  • HFA of the ESC Position paper on the management of LVAD supported patients for the non LVAD specialist healthcare provider : Part 1: Introduction and at the non-hospital settings in the community
  • 2021
  • Ingår i: ESC Heart Failure. - : Wiley. - 2055-5822. ; 8:6, s. 4394-4408
  • Tidskriftsartikel (refereegranskat)abstract
    • The accepted use of left ventricular assist device (LVAD) technology as a good alternative for the treatment of patients with advanced heart failure together with the improved survival of the LVAD-supported patients on the device and the scarcity of donor hearts has significantly increased the population of LVAD-supported patients. The expected and non-expected device-related and patient-device interaction complications impose a significant burden on the medical system exceeding the capacity of the LVAD implanting centres. The ageing of the LVAD-supported patients, mainly those supported with the destination therapy indication, increases the risk for those patients to experience comorbidities common in the older population. The probability of an LVAD-supported patient presenting with medical emergency to a local emergency department, internal, or surgical ward of a non-LVAD implanting centre is increasing. The purpose of this trilogy is to supply the immediate tools needed by the non-LVAD specialized physician: ambulance clinicians, emergency ward physicians, general cardiologists, internists, anaesthesiologists, and surgeons, to comply with the medical needs of this fast-growing population of LVAD-supported patients. The different issues discussed will follow the patients pathway from the ambulance to the emergency department and from the emergency department to the internal or surgical wards and eventually to the discharge home from the hospital back to the general practitioner. In this first part of the trilogy on the management of LVAD-supported patients for the non-LVAD specialist healthcare provider, after the introduction on the assist devices technology in general, definitions and structured approach to the assessment of the LVAD-supported patient in the ambulance and emergency department is presented including cardiopulmonary resuscitation for LVAD-supported patients.
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2.
  • Ben Gal, Tuvia, et al. (författare)
  • Guidance on the management of left ventricular assist device (LVAD) supported patients for the non-LVAD specialist healthcare provider: executive summary
  • 2021
  • Ingår i: European Journal of Heart Failure. - : Wiley-Blackwell. - 1388-9842 .- 1879-0844. ; 23:10, s. 1597-1609
  • Tidskriftsartikel (refereegranskat)abstract
    • The accepted use of left ventricular assist device (LVAD) technology as a good alternative for the treatment of patients with advanced heart failure together with the improved survival of patients on the device and the scarcity of donor hearts has significantly increased the population of LVAD supported patients. Device-related, and patient-device interaction complications impose a significant burden on the medical system exceeding the capacity of LVAD implanting centres. The probability of an LVAD supported patient presenting with medical emergency to a local ambulance team, emergency department medical team and internal or surgical wards in a non-LVAD implanting centre is increasing. The purpose of this paper is to supply the immediate tools needed by the non-LVAD specialized physician - ambulance clinicians, emergency ward physicians, general cardiologists, and internists - to comply with the medical needs of this fast-growing population of LVAD supported patients. The different issues discussed will follow the patients pathway from the ambulance to the emergency department, and from the emergency department to the internal or surgical wards and eventually back to the general practitioner.
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3.
  • Gustafsson, Finn, et al. (författare)
  • HFA of the ESC position paper on the management of LVAD-supported patients for the non-LVAD specialist healthcare provider : Part 3: at the hospital and discharge
  • 2021
  • Ingår i: ESC Heart Failure. - : Wiley Periodicals Inc. - 2055-5822. ; 8:6, s. 4425-4443
  • Tidskriftsartikel (refereegranskat)abstract
    • The growing population of left ventricular assist device (LVAD)-supported patients increases the probability of an LVAD- supported patient hospitalized in the internal or surgical wards with certain expected device related, and patient-device interaction complication as well as with any other comorbidities requiring hospitalization. In this third part of the trilogy on the management of LVAD-supported patients for the non-LVAD specialist healthcare provider, definitions and structured approach to the hospitalized LVAD-supported patient are presented including blood pressure assessment, medical therapy of the LVAD supported patient, and challenges related to anaesthesia and non-cardiac surgical interventions. Finally, important aspects to consider when discharging an LVAD patient home and palliative and end-of-life approaches are described.
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4.
  • Hammer, Yoav, et al. (författare)
  • Exergaming in patients with a left ventricular assist device : a feasibility study
  • 2023
  • Ingår i: ESC Heart Failure. - : Wiley. - 2055-5822. ; 10:1, s. 738-741
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims Exercise games (exergames) have been recently proposed as a mode of facilitating physical activity in patients with chronic diseases. Although patients supported with left ventricular assist devices (LVADs) benefit from physical activity, specific LVAD-related issues hinder their ability to exercise properly. The objective of this study was to assess the feasibility and safety of exergaming in LVAD-supported patients. Methods and results Eleven LVAD-supported patients were enrolled in a 4 week exergaming programme using Nintendo Wii console with five sport games. Patients were instructed to play for 30 min a day, 5 days a week. Data on exercise capacity and exergaming were collected by using the 6 min walk test (6MWT) and a daily self-report diary, respectively. Feasibility of using the console and its safety was assessed by a semi-structured patient interview. Quality of life was assessed by the Minnesota Living with Heart failure Questionnaire (MLHFQ) and the Cantrils Ladder of Life. Safety was assessed by patients report in interview and diary. The study group consisted of 10 male patients and 1 female patient, mean age of 67 +/- 7 years, of whom 10 were supported with the HeartMate 3 LVAD for a median of 10 (interquartile range 3, 21) months. Baseline exercise capacity assessed by the 6MWT ranged from 240 to 570 m (mean 448 +/- 112). After 4 weeks of exergaming, 6MWT distance increased from a mean of 448 +/- 112 (evaluated in six patients) to 472 +/- 113 m (P = 0.023). Patients Cantrils Ladder of Life score improved numerically from an average of 6.13 to 7.67, as did their MLHFQ score from 45.9 +/- 27 to 38.7 +/- 18, with higher and lower scores, respectively, reflecting higher quality of life. No specific LVAD-related safety issues regarding exergaming were reported. Conclusions Exergaming was found to be a safe and feasible mode for encouraging physical activity in LVAD-supported patients and carries a potential for improving exercise capacity and quality of life in these patients. Larger scale studies are warranted to further investigate the effect of exergaming in this patient population.
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5.
  • Itzhaki Ben Zadok, Osnat, et al. (författare)
  • Health-related quality of life in left ventricular assist device-supported patients
  • 2021
  • Ingår i: ESC Heart Failure. - : Wiley. - 2055-5822. ; 8:3, s. 2036-2044
  • Tidskriftsartikel (refereegranskat)abstract
    • Aims This study aimed to evaluate the different health-related quality of life (HR-QoL) aspects in patients with both short-term and long-term duration LVAD support at pre-specified time intervals. Methods and results We performed a single-centre HR-QoL analysis of short-term and long-term LVAD-supported patients using the short version of the Kansas City Cardiomyopathy Questionnaire (KCCQ-12) and the Changes in Sexual Functioning Questionnaire along with a survey to evaluate patients social and driving routines. Data were collected at baseline and at 6 or 12 month follow-up. Included were 46 patients with a median time from LVAD implantation of 1.1 [inter-quartile range (IQR) 0.5, 2.6] years. The median KCCQ-12 summary score was 56 (IQR 29, 74) with most favourable scores in the symptom frequency domain [75 (IQR 50, 92)] and worse scores in the physical limitation [42 (IQR 25, 75)] and QoL [44 (IQR 25, 75)] domains. No significant changes were apparent during study follow-up [KCCQ-12 summary score 56 (IQR 35, 80)], and no significant correlation between the KCCQ-12 summary score and ventricular assist device-support duration was detected (r = -0.036, P = 0.812). Sexual dysfunction was noted across all domains with a cumulative score of 31 (IQR 22, 42). Seventy-six per cent of patients resumed driving after LVAD implantation, and 43% of patients reported they socialize with family and friends more frequently since surgery. Conclusions Short-term and long-term LVAD-supported patients had impaired HR-QoL and sexual function at baseline and at follow-up yet reported an improvement in social interactions and independency. A broader spectrum of patients reported HR-QoL measures should be integrated into the pre-LVAD implantation assessment and preparation.
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6.
  • Melnikov, Semyon, et al. (författare)
  • Self-care behaviours of patients with left ventricular assist devices in Israel: changes during the COVID-19 pandemic
  • 2023
  • Ingår i: ESC Heart Failure. - : WILEY PERIODICALS, INC. - 2055-5822. ; 10:4, s. 2734-2739
  • Tidskriftsartikel (refereegranskat)abstract
    • AimsLeft ventricular assist devices (LVADs) support the hearts of patients with advanced heart failure. Following LVAD implantation, patients face a complex regimen of self-care behaviours including self-care maintenance, self-care monitoring and self-care management. However, during the COVID-19 pandemic, symptoms of anxiety and depression may have interfered with their self-care. Currently, little is known on how specific self-care behaviours of LVAD-implanted patients changed during the COVID-19 pandemic. We aim to describe the changes in self-care behaviours among patients with an implanted LVAD in Israel during the COVID-19 pandemic and explore the factors related to self-care behaviour change. MethodsA prospective observational cross-sectional study design. A convenience sample of 27 Israeli LVAD-implanted patients (mean age 62.4 +/- 9, 86% male, 78.6% living with a partner) completed the LVAD Self-Care Behaviour Scale (1 = never to 5 = always) and Hospital Anxiety and Depression Scale (0 = not at all to 3 = most of the time). Data were collected before and after the onset of the COVID-19 pandemic in Israel. Statistical analyses included paired t-tests, Pearsons correlations, and one-way repeated measures ANOVAs. ResultsDuring the COVID-19 pandemic, a significant decrease was found in patients adherence to checking and recording their LVAD speed, flow, power and PI (Pulsatility Index) (P = 0.05), checking their INR (P = 0.01), and daily weighing (P < 0.01). The prevalence of some behaviours (e.g. regularly exercising) increased in some patients and decreased in others. Patients living without a partner worsened their adherence to some of the self-care behaviours (e.g. taking medicines as prescribed), compared with those living with a partner (M-b = 5.0 +/- 0 and M-d = 5.0 +/- 0, delta = 0 vs. M-b = 5.0 +/- 0 and M-d = 4.6 +/- 0.9, delta = -0.4, respectively; F = 4.9, P = 0.04). Women, and not men, tended to improve their adherence to the self-care behaviour such as avoiding kinking, pulling, or moving the LVAD driveline at the exit site (M-b = 4.0 +/- 1.0 and M-d = 5.0 +/- 0, delta = 1.0 vs. M-b = 4.5 +/- 0.9 and M-d = 4.4 +/- 1.2, delta = -0.1, F = 4.7, P = 0.04, respectively). In total, 41% (11) patients reported neither anxiety nor depression, 11% (3) reported anxiety, 15% (4) reported depression, and 44% (12) reported both anxiety and depression. No associations between anxiety and/or depression and self-care behaviours were found. ConclusionsPriorities in self-care behaviours among patients with implanted LVAD changed after the onset of the COVID-19 pandemic. Factors that assisted with adherence to self-care behaviours included living with a partner and being female. The current results may guide further research on identifying behaviours that are at risk of not being maintained during a time of emergency.
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7.
  • Milicic, Davor, et al. (författare)
  • Heart Failure Association of the European Society of Cardiology position paper on the management of left ventricular assist device-supported patients for the non-left ventricular assist device specialist healthcare provider : Part 2: at the emergency department
  • 2021
  • Ingår i: ESC Heart Failure. - : Wiley. - 2055-5822. ; 8:6, s. 4409-4424
  • Tidskriftsartikel (refereegranskat)abstract
    • The improvement in left ventricular assist device (LVAD) technology and scarcity of donor hearts have increased dramatically the population of the LVAD-supported patients and the probability of those patients to present to the emergency department with expected and non-expected device-related and patient-device interaction complications. The ageing of the LVAD-supported patients, mainly those supported with the destination therapy indication, increases the risk for those patients to suffer from other co-morbidities common in the older population. In this second part of the trilogy on the management of LVAD-supported patients for the non-LVAD specialist healthcare provider, definitions and structured approach to the LVAD-supported patient presenting to the emergency department with bleeding, neurological event, pump thrombosis, chest pain, syncope, and other events are presented. The very challenging issue of declaring death in an LVAD-supported patient, as the circulation is artificially preserved by the device despite no other signs of life, is also discussed in detail.
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8.
  • Ben Gal, Tuvia, et al. (författare)
  • Psychometric Testing of the Hebrew Version of the European Heart Failure Self-Care Behaviour Scale
  • 2020
  • Ingår i: Heart, Lung and Circulation. - : Elsevier. - 1443-9506 .- 1444-2892. ; :7, s. E121-E130
  • Tidskriftsartikel (refereegranskat)abstract
    • BACKGROUND: The assessment of self-care behaviour is important for tailoring care to patients and evaluating the effectiveness of heart failure (HF) disease-management programmes. The European HF Self-care Behaviour (EHFScB) scale is a validated instrument used worldwide.AIM: The purpose of the study was to evaluate psychometric properties of the Hebrew version of the nine-item EHFScB scale in Israeli patients with HF.METHOD: To develop the Hebrew version of the EHFScB scale, forward and back translation was performed. The psychometric evaluation was based on data from 102 patients with HF (mean age 61±12 yr, male 75%, New York Heart Association [NYHA] class II 42% and NYHA class III 51%) included in two cross-sectional studies performed in 2007 and 2015-2017 in an Israeli hospital. Content validity, construct validity, known-groups validity, and discriminant validity were assessed. Reliability was evaluated with internal consistency.RESULTS: Content validity and useability were confirmed by HF experts and patients with HF. Construct validity was tested using factor analysis and two factors were extracted (factor 1: consulting behaviour; factor 2: adherence to the regimen). Known-groups validity testing revealed a significant difference before and after an educational intervention in the total score (n=40 [41.6±23.8] vs [67.6±21.8]; p<0.01). A weak correlation between the self-care score and health-related quality of life (r= -0.299, p<0.01) was observed, showing that these concepts were related but not overlapping. Cronbach's alpha was 0.78 for the total scale, 0.76 for factor 1, and 0.68 for factor 2, suggesting that the internal consistency of this scale was acceptable.CONCLUSIONS: Our study provides support for the useability, validity, and reliability of the nine-item Hebrew version of the EHFScB scale.
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9.
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10.
  • Jaarsma, Tiny, et al. (författare)
  • Effects of exergaming on exercise capacity in patients with heart failure : results of an international multicentre randomized controlled trial
  • 2021
  • Ingår i: European Journal of Heart Failure. - : John Wiley & Sons. - 1388-9842 .- 1879-0844. ; 23:1, s. 114-124
  • Tidskriftsartikel (refereegranskat)abstract
    • AimsExergaming is a new tool to increase physical activity. This study aimed to determine the effects of access to a home‐based exergame (Nintendo Wii) in patients with heart failure (HF) on exercise capacity, self‐reported physical activity and patient‐reported outcome measures.Methods and resultsWe enrolled 605 HF patients in New York Heart Association functional class I–IV, independent of ejection fraction, in an international multicentre randomized controlled trial. Patients were randomized to exergame (intervention) or motivational support (control). The primary endpoint was change in submaximal aerobic exercise capacity as measured by the distance walked in 6 min (6MWT) between baseline and 3 months. Secondary endpoints included long‐term submaximal aerobic exercise capacity, muscle function, self‐reported physical activity, exercise motivation, exercise self‐efficacy at 3, 6 and 12 months. At baseline, patients on average walked 403 ± 142 m on the 6MWT. Patients in the exergame group walked further compared to controls at 3 months (454 ± 123 vs. 420 ± 127 m, P = 0.005), at 6 months (452 ± 123 vs. 426 ± 133 m, P = 0.015) and 12 months (456 ± 122 vs. 420 ± 135 m, P = 0.004). However, correcting for baseline 6MWT values by means of a linear mixed‐effects model revealed no main effect for the intervention on 6MWT. Small significant effects on muscle function were found. Statistically significant treatment effects were found for muscle function but after correction for baseline and confounders, only the treatment effect for the heel‐rise left at 6 months was significant (P < 0.05). No treatment effect was found for exercise motivation, exercise self‐efficacy, or self‐reported physical activity.ConclusionExergaming was safe and feasible in patients with HF with different profiles in different health care systems, cultures and climates. However, it was not effective in improving outcomes on submaximal aerobic exercise capacity. Subgroup analysis did not identify specific subgroups benefiting from the intervention.
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11.
  • Adamo, Marianna, et al. (författare)
  • Epidemiology, pathophysiology, diagnosis and management of chronic right-sided heart failure and tricuspid regurgitation. A clinical consensus statement of the Heart Failure Association (HFA) and the European Association of Percutaneous Cardiovascular Interventions (EAPCI) of the ESC
  • 2024
  • Ingår i: European Journal of Heart Failure. - : WILEY. - 1388-9842 .- 1879-0844.
  • Tidskriftsartikel (refereegranskat)abstract
    • Right-sided heart failure and tricuspid regurgitation are common and strongly associated with poor quality of life and an increased risk of heart failure hospitalizations and death. While medical therapy for right-sided heart failure is limited, treatment options for tricuspid regurgitation include surgery and, based on recent developments, several transcatheter interventions. However, the patients who might benefit from tricuspid valve interventions are yet unknown, as is the ideal time for these treatments given the paucity of clinical evidence. In this context, it is crucial to elucidate aetiology and pathophysiological mechanisms leading to right-sided heart failure and tricuspid regurgitation in order to recognize when tricuspid regurgitation is a mere bystander and when it can cause or contribute to heart failure progression. Notably, early identification of right heart failure and tricuspid regurgitation may be crucial and optimal management requires knowledge about the different mechanisms and causes, clinical course and presentation, as well as possible treatment options. The aim of this clinical consensus statement is to summarize current knowledge about epidemiology, pathophysiology and treatment of tricuspid regurgitation in right-sided heart failure providing practical suggestions for patient identification and management.
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12.
  • Adamopoulos, Stamatis, et al. (författare)
  • Right heart failure with left ventricular assist devices: Preoperative, perioperative and postoperative management strategies. A clinical consensus statement of the Heart Failure Association (HFA) of the ESC
  • 2024
  • Ingår i: European Journal of Heart Failure. - : WILEY. - 1388-9842 .- 1879-0844.
  • Tidskriftsartikel (refereegranskat)abstract
    • Right heart failure (RHF) following implantation of a left ventricular assist device (LVAD) is a common and potentially serious condition with a wide spectrum of clinical presentations with an unfavourable effect on patient outcomes. Clinical scores that predict the occurrence of right ventricular (RV) failure have included multiple clinical, biochemical, imaging and haemodynamic parameters. However, unless the right ventricle is overtly dysfunctional with end-organ involvement, prediction of RHF post-LVAD implantation is, in most cases, difficult and inaccurate. For these reasons optimization of RV function in every patient is a reasonable practice aiming at preparing the right ventricle for a new and challenging haemodynamic environment after LVAD implantation. To this end, the institution of diuretics, inotropes and even temporary mechanical circulatory support may improve RV function, thereby preparing it for a better adaptation post-LVAD implantation. Furthermore, meticulous management of patients during the perioperative and immediate postoperative period should facilitate identification of RV failure refractory to medication. When RHF occurs late during chronic LVAD support, this is associated with worse long-term outcomes. Careful monitoring of RV function and characterization of the origination deficit should therefore continue throughout the patient's entire follow-up. Despite the useful information provided by the echocardiogram with respect to RV function, right heart catheterization frequently offers additional support for the assessment and optimization of RV function in LVAD-supported patients. In any patient candidate for LVAD therapy, evaluation and treatment of RV function and failure should be assessed in a multidimensional and multidisciplinary manner.
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13.
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14.
  • Ben Gal, Tuvia, et al. (författare)
  • Exercise programs for LVAD supported patients: A snapshot from the ESC affiliated countries
  • 2015
  • Ingår i: International Journal of Cardiology. - : ELSEVIER IRELAND LTD. - 0167-5273 .- 1874-1754. ; 201, s. 215-219
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: To contribute to the protocol development of exercise training in LVAD supported patients by reviewing the exercise programs for those patients in the ESC affiliated countries. Methods: A subset of data from 77 (26 countries) LVAD implanting centers that participated in the Extra-HF survey (170 centers) was analyzed. Results: Of the 77 LVAD implanting centers, 45 (58%) reported to have a functioning exercise training program (ETP) for LVAD patients. In 21 (47%) of the 45 ETP programs in LVAD implanting centers, patients begin their ETP during their in-hospital post-operative recovery period. Most centers (71%) have an early post-discharge program for their patients, and 24% of the centers offer a long-term maintenance program. The professionals involved in the ETPs are mainly physiotherapists (73%), psychologists, cardiac rehab nurses (22%), or cardiologists specialized in rehabilitation (22%). Not all programs include the treating cardiologist or surgeons. Most of the ETPs (84%) include aerobic endurance training, mostly cycling (73%), or walking (62%) at low intensity intervals. Some programs apply resistance training (47%), respiratory muscle training (55%), or balance training (44%). Reasons for the absence of ETPs are referral of patients to another center (14 centers) and lack of resources (11 centers). Conclusion: There is a great variance in ETPs in LVAD implanting centers. Not all the implanting centers have an ETP, and those that do have adopted a local protocol. Clear guidance on ETP supplied by LVAD implanting centers to LVAD supported patients and more evidence for optimal modalities are needed. (C) 2015 Elsevier Ireland Ltd. All rights reserved.
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15.
  • Ben Gal, Tuvia, et al. (författare)
  • Self-care and communication issues at the end of life of recipients of a left-ventricular assist device as destination therapy
  • 2013
  • Ingår i: Current opinion in supportive and palliative care. - : Lippincott Williams & Wilkins. - 1751-4266. ; 7:1, s. 29-35
  • Tidskriftsartikel (refereegranskat)abstract
    • PURPOSE OF REVIEW: The purpose of this review is to provide an overview of self- care and communication issues at the end of life of patients with left-ventricular assist devices (LVADs) for destination therapy, based on recent research on end-of-life communication in other diseases.RECENT FINDINGS: For many patients with advanced heart failure, LVADs as destination therapy improve survival and quality of life. However, LVADs can be associated with complications, new comorbidities or worsening of previous conditions, resulting in decreased quality of life and limited prognosis, raising the need for planning palliative and end-of-life care. Open communication addressing the consequences of the LVAD implantation for daily life and the future (including advance directives) is advised in different stages of the treatment, involving a multidisciplinary team taking care of these complex patients and their caregivers.SUMMARY: Healthcare professionals treating patients before and after LVAD implantation need to take an active role in end-of-life discussions and be able to communicate information regarding expected complications, quality of life and prognosis to the patients and caregivers. Research is needed addressing optimal ways and timing of communication with LVAD patients and families.
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16.
  • Cewers, Emilie, et al. (författare)
  • PHYSICAL ACTIVITY RECOMMENDATIONS FOR PATIENTS WITH HEART FAILURE BASED ON SEX: A QUALITATIVE INTERVIEW STUDY
  • 2019
  • Ingår i: Journal of Rehabilitation Medicine. - : FOUNDATION REHABILITATION INFORMATION. - 1650-1977 .- 1651-2081. ; 51:7, s. 532-538
  • Tidskriftsartikel (refereegranskat)abstract
    • Objective: Physical activity is an essential part of managing heart failure. However, adherence to activity recommendations is low, especially in female patients. The aim of this study was to investigate the perceptions of healthcare providers regarding sex differences in physical activity, motivation, barriers, and whether adaptations in care based on sex might be meaningful. Methods: This is a qualitative study; data were collected in semi-structured interviews with healthcare providers. The data were analysed using qualitative content analysis. Results: The major overarching theme was that healthcare providers feel that "Men and women are equal, but different". This theme was explained in terms of 7 sub-themes with associated categories, as follows: "Men and women prefer and perform different physical activity regardless of health status", "Male and female heart failure patients have different motivations for, and barriers to, being active", "Factors related to differences in physical activity and physical capacity between male and female heart failure patients", "Heart failure has more impact on physical activity and physical capacity than patients sex", and "Tailoring activity advice for heart failure patients based on sex." Discussion: Healthcare providers had clear opinions regarding the existence of sex differences that might affect patients care. Several differences were identified in male and female heart failure patients in terms of physical activity. There seems to be a conflict between fear of discriminating and the value of personalizing care.
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17.
  • Hill, Loreena, et al. (författare)
  • Integration of a palliative approach into heart failure care: aEuropean Society of Cardiology Heart Failure Associationposition paper
  • 2020
  • Ingår i: European Journal of Heart Failure. - : WILEY. - 1388-9842 .- 1879-0844. ; 22:12, s. 2327-2339
  • Tidskriftsartikel (refereegranskat)abstract
    • The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a good death. This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline-directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure.
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18.
  • Jaarsma, Tiny, et al. (författare)
  • Changes over time in patient-reported outcomes in patients with heart failure
  • 2024
  • Ingår i: ESC Heart Failure. - : John Wiley & Sons. - 2055-5822. ; 11:2, s. 811-818
  • Tidskriftsartikel (refereegranskat)abstract
    • 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.
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19.
  • Jaarsma, Tiny, et al. (författare)
  • Comparison of self-care behaviors of heart failure patients in 15 countries worldwide
  • 2013
  • Ingår i: Patient Education and Counseling. - : Elsevier. - 0738-3991 .- 1873-5134. ; 92:1, s. 114-120
  • Tidskriftsartikel (refereegranskat)abstract
    • ObjectiveClinicians worldwide seek to educate and support heart failure patients to engage in self-care. We aimed to describe self-care behaviors of patients from 15 countries across three continents.MethodsData on self-care were pooled from 5964 heart failure patients from the United States, Europe, Australasia and South America. Data on self-care were collected with the Self-care of Heart Failure Index or the European Heart Failure Self-care Behavior Scale.ResultsIn all the samples, most patients reported taking their medications as prescribed but exercise and weight monitoring were low. In 14 of the 22 samples, more than 50% of the patients reported low exercise levels. In 16 samples, less than half of the patients weighed themselves regularly, with large differences among the countries. Self-care with regard to receiving an annual flu shot and following a low sodium diet varied most across the countries.ConclusionSelf-care behaviors are sub-optimal in heart failure patients and need to be improved worldwide.Practice implicationsInterventions that focus on specific self-care behaviors may be more effective than general educational programs. Changes in some health care systems and national policies are needed to support patients with heart failure to increase their self-care behavior.
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20.
  • Jaarsma, Tiny, et al. (författare)
  • Exploring factors related to non-adherence to exergaming in patients with chronic heart failure
  • 2021
  • Ingår i: ESC Heart Failure. - : John Wiley & Sons. - 2055-5822. ; 8:6, s. 4644-4651
  • Tidskriftsartikel (refereegranskat)abstract
    • AimsThis study aimed to explore factors related to non-adherence to exergaming in patients with heart failure.Methods and resultsData from patients in the exergame group in the HF-Wii trial were used. Adherence to exergaming was defined as playing 80% or more of the recommended time. Data on adherence and reasons for not exergaming at all were collected during phone calls after 2, 4, 8, and 12 weeks. Logistic regression was performed between patients who were adherent and patients who were non-adherent. Secondly, a logistic regression was performed between patients who not exergamed at all and patients who were adherent to exergaming. Finally, we analysed the reasons for not exergaming at all with manifest content analysis. Almost half of the patients were adherent to exergaming. Patients who were adherent had lower social motivation [odds ratio (OR) 0.072; 95% confidence interval (CI) 0.054-0.095], fewer sleeping problems (OR 0.84; 95% CI 0.76-0.092), and higher exercise capacity (OR 1.003; 95% CI 1.001-1.005) compared with patients who were non-adherent. Patients who not exergamed at all had lower cognition (OR 1.18; 95% CI 1.06-1.31) and more often suffered from peripheral vascular disease (OR 3.74; 95% CI 1.01-13.83) compared with patients who were adherent to exergaming. Patients most often cited disease-specific barriers as a reason for not exergaming at all.ConclusionsA thorough baseline assessment of physical function and cognition is needed before beginning an exergame intervention. It is important to offer the possibility to exergame with others, to be able to adapt the intensity of physical activity.
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21.
  • Jaarsma, Tiny, et al. (författare)
  • Factors associated with lack of improvement in submaximal exercise capacity of patients with heart failure
  • 2021
  • Ingår i: ESC Heart Failure. - : John Wiley & Sons. - 2055-5822. ; 8:6, s. 4539-4548
  • Tidskriftsartikel (refereegranskat)abstract
    • AimsImprovement in exercise capacity is the primary goal of physical activity programmes for patients with heart failure (HF). Although activity programmes are effective for some patients, others do not benefit. Identifying factors related to a lack of improvement in submaximal exercise capacity may help us interpret findings and design new interventions. The aim of this study is to identify factors contributing to a lack of improvement in submaximal exercise capacity 3 months after physical activity advice or an exergame intervention in patients with HF. Additionally, we aimed to assess differences in lack of improvement in submaximal exercise capacity of patients whose baseline exercise capacity predicted a worse compared with better prognosis of HF.Methods and resultsThis secondary analysis of the HF-Wii study analysed baseline and 3 month data of the 6 min walk test (6MWT) from 480 patients (mean age 67 years, 72% male). Data were analysed separately in patients with a pre-defined 6 min walking distance at baseline of <300 m (n = 79) and >= 300 m (n = 401). Among patients with a baseline 6MWT of >= 300 m, 18% had deteriorated submaximal exercise capacity. In the multiple logistic regression analysis, lower baseline levels of self-reported physical activity [odds ratio (OR) = 0.77, 95% confidence interval (CI) = 0.60-0.97], lower baseline levels of cognitive function (OR = 0.87, 95%CI = 0.79-0.96) were significantly associated with lack of improvement in exercise capacity at 3 months. Not randomized to exergaming (OR = 0.63, 95%CI = 0.37-1.09) was likely (P = 0.097) to be associated with lack of improvement in exercise capacity at 3 months. Among the 79 patients with baseline 6MWT of <300 m, 41% (n = 32) did not improve 6MWT distance at 3 months. Independent predictors for the lack of improvement for 6MWT were New York Heart Association class III/IV (OR = 4.68, 95%CI = 1.08-20.35), higher levels of serum creatinine (OR = 1.02, 95%CI = 1.003-1.03), lower cognitive function (OR = 0.86, 95%CI = 0.75-0.99), and fewer anxiety symptoms (OR = 0.84, 95%CI = 0.72-0.98).ConclusionsLower self-reported physical activity and cognitive impairment predict lack of improvement in submaximal exercise capacity in HF patients. Patients who have a worse prognosis (score <300 m at the 6MWT) are often frail and gain less in exercise capacity. These patients may need a more comprehensive approach to have an effect on exercise capacity, including an individually tailored exercise programme with aerobic exercise (if tolerated) and strength exercises.
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22.
  • Jaarsma, Tiny, et al. (författare)
  • Increasing exercise capacity and quality of life of patients with heart failure through Wii gaming: the rationale, design and methodology of the HF-Wii study; a multicentre randomized controlled trial
  • 2015
  • Ingår i: European Journal of Heart Failure. - : Wiley. - 1388-9842 .- 1879-0844. ; 17:7, s. 743-748
  • Tidskriftsartikel (refereegranskat)abstract
    • AimsExercise is known to be beneficial for patients with heart failure (HF), and these patients should therefore be routinely advised to exercise and to be or to become physically active. Despite the beneficial effects of exercise such as improved functional capacity and favourable clinical outcomes, the level of daily physical activity in most patients with HF is low. Exergaming may be a promising new approach to increase the physical activity of patients with HF at home. The aim of this study is to determine the effectiveness of the structured introduction and access to a Wii game computer in patients with HF to improve exercise capacity and level of daily physical activity, to decrease healthcare resource use, and to improve self-care and health-related quality of life.Methods and resultsA multicentre randomized controlled study with two treatment groups will include 600 patients with HF. In each centre, patients will be randomized to either motivational support only (control) or structured access to a Wii game computer (Wii). Patients in the control group will receive advice on physical activity and will be contacted by four telephone calls. Patients in the Wii group also will receive advice on physical activity along with a Wii game computer, with instructions and training. The primary endpoint will be exercise capacity at 3 months as measured by the 6 min walk test. Secondary endpoints include exercise capacity at 6 and 12 months, level of daily physical activity, muscle function, health-related quality of life, and hospitalization or death during the 12 months follow-up.ConclusionThe HF-Wii study is a randomized study that will evaluate the effect of exergaming in patients with HF. The findings can be useful to healthcare professionals and improve our understanding of the potential role of exergaming in the treatment and management of patients with HF.
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23.
  • Jaarsma, Tiny, et al. (författare)
  • Self-care of heart failure patients: practical management recommendations from the Heart Failure Association of the European Society of Cardiology
  • 2021
  • Ingår i: European Journal of Heart Failure. - : WILEY. - 1388-9842 .- 1879-0844. ; 23:1, s. 157-174
  • Tidskriftsartikel (refereegranskat)abstract
    • Self-care is essential in the long-term management of chronic heart failure. Heart failure guidelines stress the importance of patient education on treatment adherence, lifestyle changes, symptom monitoring and adequate response to possible deterioration. Self-care is related to medical and person-centred outcomes in patients with heart failure such as better quality of life as well as lower mortality and readmission rates. Although guidelines give general direction for self-care advice, health care professionals working with patients with heart failure need more specific recommendations. The aim of the management recommendations in this paper is to provide practical advice for health professionals delivering care to patients with heart failure. Recommendations for nutrition, physical activity, medication adherence, psychological status, sleep, leisure and travel, smoking, immunization and preventing infections, symptom monitoring, and symptom management are consistent with information from guidelines, expert consensus documents, recent evidence and expert opinion.
  •  
24.
  • Jönsson, Adam, et al. (författare)
  • Perspectives of Health Care Providers on the Role of Culture in the Self-Care of Patients with Chronic Heart Failure: A Qualitative Interview Study
  • 2020
  • Ingår i: INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH. - : MDPI. - 1661-7827 .- 1660-4601. ; 17:14
  • Tidskriftsartikel (refereegranskat)abstract
    • Background: Self-care is important in chronic diseases such as heart failure. The cultural background of health care providers might influence their view on self-care behaviour and education they provide. The aim of this study was to describe health care providers perceptions of the role of culture in self-care and how those perceptions shape their experiences and their practices. Methods: A qualitative study was performed in Israel, a country with a culturally diverse population. Data were collected using semi-structured interviews with 12 healthcare providers from different cultural backgrounds. Interviews were recorded and transcribed verbatim and analysed using content analysis. Results: Healthcare providers experienced cultural background influenced their patients self-care behaviour. Perceived culture-specific barriers to self-care such as dietary traditions interfering with the recommended diet, willingness to undertake self-care and beliefs conflicting with medical treatment were identified. Healthcare providers described that they adapted patient education and care based on the cultural background of the patients. Shared cultural background, awareness and knowledge of differences were described as positively influencing self-care education, while cultural differences could complicate this process. Conclusions: Cultural-specific barriers for self-care were perceived by health care providers and they identified that their own cultural background shapes their experiences and their practices.
  •  
25.
  • Kato, Naoko, et al. (författare)
  • Learning self-care after left ventricular assist device implantation
  • 2014
  • Ingår i: Current Heart Failure Reports. - : Springer. - 1546-9530 .- 1546-9549. ; 11:3, s. 290-298
  • Tidskriftsartikel (refereegranskat)abstract
    • The number of heart failure (HF) patients living with a left ventricular assist device (LVAD) as destination therapy is increasing. Successful long-term LVAD support includes a high degree of self-care by the patient and their caregiver, and also requires long-term support from a multidisciplinary team. All three components of self-care deserve special attention once an HF patient receives an LVAD, including activities regarding self-care maintenance (activities related both to the device and lifestyle), self-care monitoring (e.g., monitoring for complications or distress), and self-care management (e.g., handling alarms or coping with living with the device). For patients to perform optimal self-care once they are discharged, they need optimal education that focuses on knowledge and skills through a collaborative, adult learning approach.
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