Search

Edita Lycholip,1,2 Ina Thon Aamodt,3,4 Irene Lie,3 Toma Šimbelytė,5 Roma Puronaitė,2,6,7 Hans Hillege,8 Arjen de Vries,8 Imke Kraai,9 Anna Stromberg,10 Tiny Jaarsma,11 Jelena Čelutkienė1,2 1Institute of Clinical Medicine, Faculty of Medicine, Vilnius University, Vilnius, Lithuania; 2Center of Cardiology and Angiology, Vilnius University Hospital Santaros Clinics, Vilnius, Lithuania; 3Centre for Patient-Centered Heart and Lung Research, Department of Cardiothoracic Surgery, Division of Cardiovascular and Pulmonary Diseases, Oslo University Hospital, Oslo, Norway; 4Department of Nursing Science, Institute of Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway; 5Clinic of Internal Medicine, Centre of Family and Internal Medicine, Vilnius University Santaros Clinics, Vilnius University, Vilnius, Lithuania; 6Centre of Informatics and Development, Vilnius University Hospital Santaros Clinics, Vilnius, Lithuania; 7Institute of Mathematics and Informatics, Vilnius University, Vilnius, Lithuania; 8Department of Cardiology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands; 9PRA Health Sciences – Early Development Services, Groningen, the Netherlands; 10Department of Medical and Health Sciences, Linkoping University, Linkoping, Sweden; 11Department of Social and Welfare Studies, Linkoping University, Norrkoping, Sweden Introduction: Self-care is an important patient-reported outcome (PRO) for heart failure (HF) patients, which might be affected by disease management and/or telemonitoring (TM). The number of studies reporting the influence of TM on self-care is limited.Aims: This study aimed: to assess whether TM, in addition to information-and-communication-technology (ICT)-guided disease management system (ICT-guided DMS), affects self-care behavior; to evaluate the dynamics of self-care during the study; to investigate factors contributing to self-care changes; and to identify a patient profile that predisposes the patient to improvement in self-care. Methods: In the INnovative ICT-guided-DMS combined with Telemonitoring in OUtpatient clinics for Chronic HF patients (IN TOUCH) study, 177 patients were randomized to either ICT-guided DMS or TM+ICT-guided DMS, with a follow-up of 9months. The current analysis included 118 participants (mean age: 69±11.5years; 70% male) who filled the following PRO instruments: the nine-item European Heart Failure Self-care Behaviour scale (EHFScBs), Hospital Anxiety and Depression scale (HADs), and Minnesota Living with HF Questionnaire (MLHFQ). Results: The baseline level of self-care was better in the TM+ICT-guided-DMS group (n=58) compared to ICT-guided-DMS group (n=60, p=0.023). Self-care behavior improved in the ICT-guided-DMS group (p28, or from 17 to 28 with concomitant HADs depression subscale (HADs_D) score ≤8, demonstrated the greatest potential to improve self-care during the study. Conclusion: TM did not have an advantage on self-care improvement. Poor physical aspect of quality of life, lower LVEF, and lower NYHA class were associated with self-care worsening. The greatest self-care improvement may be achieved in those patients who have low or medium initial self-care level in the absence of depression. Keywords: heart failure, self-care, telemonitoring, disease management, patient-reported outcomes

BACKGROUND: One of the major aims in the treatment of patients with heart failure (HF) is symptom relief and an improvement in the health-related quality of life (HR-QoL). The perception of impairments due to HF may differ between patients. A knowledge of the prevalence and perceived harshness of impairments due to HF is essential in providing personalized care on a patient level, in optimizing care on a population level and in finding the most appropriate patient-reported outcome for clinical trials. AIM: The aim of this study was to explore the prevalence and perceived harshness of impairments due to HF and the relation between perceived harshness and HR-QoL in patients with HF. METHODS AND RESULTS: The prevalence of impairments due to HF was assessed using items of the Minnesota Living with Heart Failure Questionnaire and the degree of perceived harshness was assessed using a structured self-assessment. A total of 100 outpatients (mean±SD age 70±9 years, 71% men) from an HF outpatient clinic were included. The prevalence of impairments was between 18 and 77%. The most prevalent impairments included tiredness and impairments in physical activity. Impairments that were frequently perceived as severely harsh included tiredness (67%), dyspnoea (57%) and impairments in physical activity (55%). Corrected item-total correlation (range 0.10-0.59) showed that tiredness (r=0.54) and impairments related to resting (r=0.59) and to participation in physical (r=0.52) and social (r=0.55) activities contributed highly to the sum-score of the Minnesota Living with Heart Failure Questionnaire. CONCLUSION: Highly prevalent impairments are not by definition perceived as severely harsh by patients with HF and do not contribute to the overall HR-QoL except for the impairments tiredness and working around the house/yard. These insights are important in providing personalized and optimized care for patients with HF. Funding agencies: Dutch Ministry of Health, Welfare, and Sport

Aim: It is still unclear whether telemonitoring reduces hospitalization and mortality in heart failure (HF) patients and whether adding an Information and Computing Technology-guided-disease-management-system (ICT-guided-DMS) improves clinical and patient reported outcomes or reduces healthcare costs. Methods: A multicenter randomized controlled trial was performed testing the effects of INnovative ICT-guided-DMS combined with Telemonitoring in OUtpatient clinics for Chronic HF patients (IN TOUCH) with in total 179 patients (mean age 69 years; 72% male; 77% in New York Heart Association Classification (NYHA) III-IV; mean left ventricular ejection fraction was 28%). Patients were randomized to ICT-guided-DMS or to ICT-guided-DMS + telemonitoring with a follow-up of nine months. The composite endpoint included mortality, HF-readmission and change in health-related quality of life (HR-QoL). Results: In total 177 patients were eligible for analyses. The mean score of the primary composite endpoint was -0.63 in ICT-guided-DMS vs. -0.73 in ICT-guided-DMS + telemonitoring (mean difference 0.1,95% CI: -0.67 +0.82, p = 0.39). All-cause mortality in ICT-guided-DMS was 12% versus 15% in ICT-guided-DMS + telemonitoring (p = 0.27); HF-readmission 28% vs. 27% p = 0.87; all-cause readmission was 49% vs. 51% (p = 0.78). HR-QoL improved in most patients and was equal in both groups. Incremental costs were 1360 in favor of ICT-guided-DMS. ICT-guided-DMS + telemonitoring had significantly fewer HF-outpatient-clinic visits (p < 0.01). Conclusion: ICT-guided-DMS + telemonitoring for the management of HF patients did not affect the primary and secondary endpoints. However, we did find a reduction in visits to the HF-outpatient clinic in this group suggesting that telemonitoring might be safe to use in reorganizing HF-care with relatively low costs. (C) 2015 The Authors. Published by Elsevier Ireland Ltd. This is an open access article under the CC BY-NC-ND license (http://cleativecommons.org/licenses/by-nc-nd/4.0/). Funding Agencies|Dutch Ministry of Health, Department of Pharmaceutical Affairs and Medical Technology (GMT)

ObjectivesHealth-related quality of life (HR-QoL) of patients with heart failure (HF) is low despite the aim of HF treatment to improve HR-QoL. To date, most studies have focused on medical and physical factors in relation to HR-QoL, few data are available on the role of emotional factors such as dispositional optimism. This study examines the prevalence of optimism and pessimism in HF patients and investigates how optimism and pessimism are associated with different patient characteristics and HR-QoL.MethodsDispositional optimism was assessed in 86 HF patients (mean age 70 ± 9 years, 28% female, mean left ventricular ejection fraction 33%) with the Revised Life Orientation Test (LOT-R). HR-QoL was assessed with the Minnesota Living with Heart Failure Questionnaire and the EuroQol.ResultsThe (mean ± SD) total score on the LOT-R was 14.6 ± 2.9 (theoretical range 0–24) and the scores on the subscales optimism and pessimism were 8.1 ± 1.9 and 5.5 ± 2.5, respectively. Higher age was related to more optimism (r = 0.22, p < 0.05), and optimism was associated with higher generic HR-QoL (B = 0.04, p < 0.05).Significance of resultsThe association found between optimism and generic HR-QoL of HF patients can lead to promising strategies to improve HF patients’ HR-QoL, particularly because the literature has indicated that optimism is a modifiable condition.

Background Knowledge of patient reported outcomes helps to provide personalized care on a patient level, optimize care on a population level, and identify the most appropriate patient reported outcomes for clinical trials. To be able to provide personalized care to patients with HF, it is important to know which treatment goals patients with HF consider the most important. This is particularly useful for interventions aimed at improving symptoms, functional status, or health-related quality of life. Aim: The aim of this study was (1) to explore which treatment goals patients with heart failure (HF) perceive as important for their treatment and (2) to identify which treatment goals take priority over other treatment goals. Methods: The study had a qualitative design and included one focus group interview with 6 patients with HF. Data were analyzed using qualitative content analysis. Results: The overall theme of this study was found to be Not getting worse. This theme was composed of 4 categories that described how the patients perceived the goals of treatment: to decrease symptoms, to improve physical function, to prevent readmission, and to live a normal life. None of the participants mentioned improved survival or being cured of their HF as a treatment goal. Conclusion Not getting worse was perceived as the treatment goal that matters to patients with HF and is in line with currently used endpoints for the evaluation of a treatment in a clinical trial. More research is necessary to develop endpoints that are consistent with the perception of patients, useful for clinical practice, and measurable. Funding Agencies|Dutch Ministry of Health, Welfare, and Sport