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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

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

Background: Anemia is a serious and highly prevalent co-morbidity in chronic heart failure (HF) patients. Its influence on health-related quality of life (HR-QoL) has rarely been studied, and no data is available regarding the role it plays in hospitalized HF patients.Methods: Baseline data from the COACH study (Coordinating study evaluating Outcomes of Advising and Counselling in Heart Failure) were used. HR-QoL was assessed by means of generic and disease-specific questionnaires. Analyses were performed using ANOVA and ANCOVA, with covariates of age, gender, eGFR, diabetes, and NYHA class.Results: In total, 1013 hospitalized patients with a mean age of 71 (SD 11) years were included; 70% of these patients had no anemia (n=712), 14% had mild anemia (n=141), and 16% had moderate-to-severe anemia (n=160). Independent associations were found between anemia and physical functioning (p=0.019), anemia and role limitations due to physical functioning (p=0.002), anemia and general health (p=0.024), and anemia and global well-being (p=0.003).Conclusion: In addition to the burden of HF itself, anemia is an important factor which influences HR-QoL in hospitalized HF patients, and one that is most pronounced in the domain related to physical functioning and general health. (C) 2012 Elsevier Ireland Ltd. All rights reserved.

Background: Patients with heart failure (HF) need long-term and complex care delivered by healthcare professionals in primary and secondary care. Although guidelines on optimal HF care exist, no specific description of components that are applied for optimal HF care at home exist. The objective of this review was to describe which components of HF (home) care are found in research studies addressing homecare interventions in the HF population. Methods: The Pubmed, Embase, Cinahl, and Cochrane databases were searched using HF-, homecare services-, and clinical trial-related search terms. Results: The literature search identified 703 potentially relevant publications, out of which 70 articles were included. All articles described interventions with two or more of the following components: multidisciplinary team, continuity of care and care plans, optimized treatment according to guidelines, educational and counselling of patients and caregivers, and increased accessibility to care. Most studies (n=65, 93%) tested interventions with three components or more and 20 studies (29%) used interventions including all five components. Conclusions: There a several studies on HF care at home, testing interventions with a variety in number of components. Comparing the results to current standards, aspects such as collaboration between primary care and hospital care, titration of medication, and patient education can be improved. © 2012 The European Society of Cardiology.

Background: In the last decades, the introduction of information and communications technology (ICT) in healthcare promised an improved quality of care while reducing work load, and resulting in a more cost-effective system. These goals might be realised by the use of computerised disease management systems (DMS) and telemedicine (TM). Aim: This case study describes the potential of a computerised disease management system in combination with telemonitoring in a patient with chronic heart failure (HF) who was frequently readmitted to the hospital. Methods: During a period of 10 months we followed and treated a male patient (age, 50, LVEF 29%) after five HF hospitalisations within six months. Therefore we used an ICT-guided DMS, in combination with TM. Predefined ranges of weight, blood pressure and heart rate were formulated. In case of serious deviated measures at home, the HF nurse was immediately informed by SMS and E-mail. With an interactive system (health monitor) the patient answered questions about his condition, including HF symptoms. In case of slight deviation of the predefined ranges, without an increase of HF symptoms, the patient gets an automatic generated advice on actions that must be taken.

Background: Chronic heart failure (HF) is a rapidly increasing epidemic with high mortality and high morbidity, leading to increasing healthcare costs. Although guidelines for the management of HF are clear, the quality of care for HF patients can still be improved. Disease management systems implemented in smart ICT solutions and telemedicine are expected to improve quality of care and to reduce costs. Aim: To investigate the effect of information and communications technology (ICT) guided disease management (DM) and telemedicine (TM) on the quality and efficiency of care in patients with HF after a hospitalisation for HF. Methods: The IN TOUCH study (innovative ICT guided disease management combined with telemonitoring in outpatient clinics for chronic heart failure patients) is a multicentre study in which 10 Dutch hospitals are participating. Patients are randomised to DM alone (n=75) or DM with TM (n=150). Total follow-up will be nine months. Primary endpoint of the study is a composite score of: (1) death from any cause during the follow-up of the study, (2) first re-admission for HF, and (3) change in quality of life compared to baseline, assessed by the Minnesota living with heart failure questionnaire.

Background: Remote monitoring of the clinical status of heart failure patients has developed rapidly and is the subject of several trials. Patient satisfaction is an important outcome and is recommended by the FDA to use in clinical research. Therefore, it should be included in studies concerning remote monitoring. Patient satisfaction with telemedicine is a multi-dimensional concept and has to be measured with standardised and validated measurement tools. Objective: To describe the current state of literature on patient satisfaction with non-invasive telemedicine, with regard to the description, measurement and overall level of patient satisfaction with telemedicine. Results: In total 193 articles were screened and fourteen articles were included in this review. None of the included articles described a clear definition or concept of patient satisfaction with telemedicine. Patient satisfaction with telemedicine was measured with selfdeveloped questionnaires, face-to-face or telephonic interviews. None of the articles used the same questionnaire or telephonic survey to measure patient satisfaction. One questionnaire was assessed for validity and reliability. In general, patients seemed to be satisfied or very satisfied with the use of telemedicine. Conclusions: Measurement of patient satisfaction is still under-exposed in telemedicine research; well-developed and validated instruments are hardly available. It is strongly recommended that patient satisfaction becomes more prominent and that well designed, validated and standardised instruments with theoretical foundation will be used to measure patient satisfaction with telemedicine.