"Not getting worse" a qualitative study of patients perceptions of treatment goals in patients with heart failure.

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.

Optimism and quality of life in patients with heart failure.

OBJECTIVES: Health-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. METHODS: Dispositional 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. RESULTS: The (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.

Heart failure patients monitored with telemedicine: patient satisfaction, a review of the literature.

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, as recommended by the U.S. Food and Drug Administration to use in clinical research, and should be included in studies concerning remote monitoring. The objective of this review is to describe the current state of the literature on patient satisfaction with noninvasive telemedicine, regarding definition, measurement, and overall level of patient satisfaction with telemedicine. METHODS AND RESULTS: The Pubmed, Embase, Cochrane, and Cinahl databases were searched using heart failure-, satisfaction-, and telemedicine-related search terms. The literature search identified 193 publications, which were reviewed by 2 independent reviewers. Fourteen articles were included. None of the articles described a clear definition or concept of patient satisfaction with telemedicine. Patient satisfaction with telemedicine was measured with self-developed questionnaires or face-to-face or telephonic interviews. None of the articles used the same questionnaire or telephonic survey to measure patient satisfaction. Only 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 underexposed in telemedicine research and the measurement of patient satisfaction with telemedicine underappreciated with poorly constructed questionnaires.

Perception of impairments by patients with heart failure.

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.

Health-related quality of life and anemia in hospitalized patients with heart failure.

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.