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      Perceptions of heart failure symptoms, disease severity, treatment decision-making, and side effects by patients and cardiologists: a multinational survey in a cardiology setting

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          Abstract

          Purpose

          Explore the extent to which heart failure (HF) symptoms and side effects of HF treatment experienced by patients are recognized by cardiologists, and concordance between patient–cardiologist perceptions of HF severity and patients’ contributions to treatment decision-making.

          Methods

          A multinational, cross-sectional survey of cardiologists and patients with HF was conducted. Patient-record forms (PRFs) were completed by cardiologists for consecutive consulting patients with HF, who completed a patient self-completion questionnaire (PSC). Responses from PRFs with an associated PSC were analyzed to compare patient- and cardiologist-reported occurrences of HF symptoms and treatment side effects, patient-perceived severity of HF and cardiologists’ perceived risk of death within 12 months, and patient input into treatment decisions. Concordance was calculated as the number of response agreements between PSCs and PRFs for total number of matched pairs. Over- or underreporting of symptoms and side effects by cardiologists relative to patient-reported occurrences were calculated.

          Results

          Overall, 2,454 patient–cardiologist pairs were identified. High levels of concordance between matched pairs were observed for the occurrence of reported HF symptoms (93%), side effects (77%–98%) and degree of patient input into treatment decisions (74%); for perceived HF severity, concordance was 54%. Most symptoms (except dyspnea when active and fatigue/weakness, experienced by >50% of patients) were underreported by cardiologists. Of patients reporting to have been informed by their cardiologist that their HF was mild, 28% were perceived by their cardiologist to have a moderate–high/very high risk of death within 12 months. Treatment choice was not discussed with almost a third of patients. When discussed, 94% of patients (n=1,540) reported the cardiologist made the final decision. Cardiologists more often under- than overreported the occurrence of side effects reported by patients.

          Conclusion

          Improved patient–cardiologist dialogue and shared decision-making is required for optimizing patient care and outcomes in HF.

          Most cited references14

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          Real-world physician and patient behaviour across countries: Disease-Specific Programmes - a means to understand.

          Treatment guidelines and strategies are often based on data from randomized controlled trials and observational clinical studies. These sources drive treatment decisions, yet the data they provide may have limited relevance to the wider population in real-world clinical practice due to the narrow selection criteria applied to patients in trials. Information used to inform clinical practice and improve patient outcomes can, therefore, be unreflective of real-world clinical situations. The purpose of this article is to assess the value of Adelphi Disease Specific Programmes (DSPs) as sources of real world data. DSPs are large, multinational, observational studies of clinical practice for a range of common chronic diseases. Treatment practice data are collected by physicians (n = 700) who are asked to provide information for the next 10 patients consulting for a specific condition. These patients (n = 7000) are also invited to fill out a self-completion form providing their own assessment of symptoms, expectations and quality of life. This article provides examples of the statistical techniques that have been employed to analyse the data in terms of cost/burden of illness, quality of life, disease severity and progression, compliance and adherence to therapy, impact of treatment guidelines and analyses of unmet need. DSPs can support clinical understanding of how diseases are managed including rationale for doctor decision-making and patient attitudes to their condition. Comparisons with other data sources and limitations of the programmes are discussed (including the fact that, unlike claims databases and registries, the DSPs are cross-sectional and not longitudinal).
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            Discharge education improves clinical outcomes in patients with chronic heart failure.

            Although interventions combining patient education and postdischarge management have demonstrated benefits in patients with chronic heart failure, the benefit attributable to patient education alone is not known. We hypothesized that a patient discharge education program would improve clinical outcomes in patients with chronic heart failure. We conducted a randomized, controlled trial of 223 systolic heart failure patients and compared the effects of a 1-hour, one-on-one teaching session with a nurse educator to the standard discharge process. Subjects were contacted by telephone at 30, 90, and 180 days to collect information about clinical events, symptoms, and self-care practices. The primary end point of the study was the total number of days hospitalized or dead in the 180-day follow-up period. Subjects randomized to receive the teaching session (n=107) had fewer days hospitalized or dead in the follow-up period (0 and 10 days, median and 75th percentiles) than did controls (n=116, 4 and 19 days; P=0.009). Patients receiving the education intervention had a lower risk of rehospitalization or death (relative risk, 0.65; 95% confidence interval, 0.45 to 0.93; P=0.018). Costs of care, including the cost of the intervention, were lower in patients receiving the education intervention than in control subjects by 2823 dollars per patient (P=0.035). The addition of a 1-hour, nurse educator-delivered teaching session at the time of hospital discharge resulted in improved clinical outcomes, increased self-care measure adherence, and reduced cost of care in patients with systolic heart failure.
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              Non-compliance in patients with heart failure; how can we manage it?

              Because of the improvement of the pharmacological and non-pharmacological treatment in heart failure (HF) patients, the HF related therapeutic regimen is becoming more complicated. Non-compliance with this regimen can result in worsening HF symptoms, sometimes leading to hospitalisation. The aims of this systematic literature review are (1) to describe the consequences of non-compliance in HF patients; (2) to summarise the degree of compliance in the various aspects of the therapeutic regimen; and (3) to review interventions that are recommended to improve compliance in HF patients. A literature search of the MEDLINE and CINAHL database from 1988 to June 2003 was performed. Studies on compliance with life style recommendations according to the HF Guidelines of the European Society of Cardiology and the American Heart Association/American College of Cardiology were included. Non-compliance with medication and other lifestyle recommendations is a major problem in patients with HF. Evidence based interventions to improve compliance in patients with HF are scarce. Interventions that can increase compliance and prevent HF related readmissions in order to improve the quality of life of patients with HF need to be developed and tested.
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                Author and article information

                Journal
                Ther Clin Risk Manag
                Ther Clin Risk Manag
                Therapeutics and Clinical Risk Management
                Therapeutics and Clinical Risk Management
                Dove Medical Press
                1176-6336
                1178-203X
                2018
                16 November 2018
                : 14
                : 2265-2272
                Affiliations
                [1 ]Real World Evidence, Cardio-Metabolic Franchise, Novartis Sweden, Stockholm, Sweden
                [2 ]Real World Evidence, Cardio-Metabolic Franchise, Novartis Pharma, Basel, Switzerland
                [3 ]Wellmera AG, Basel, Switzerland
                [4 ]Real World Research, Adelphi Real World, Bollington, UK, james.jackson@ 123456adelphigroup.com
                Author notes
                Correspondence: James Jackson, Adelphi Real World, Adelphi Mill, Grimshaw Lane, Bollington, Macclesfield SK10 5JB, UK, Tel +44 1625 577371, Fax +44 1625 577294, Email james.jackson@ 123456adelphigroup.com
                Article
                tcrm-14-2265
                10.2147/TCRM.S183200
                6247946
                30532549
                49c6a4ae-2e36-4305-9c7b-d6d79a28c04d
                © 2018 Bruce Wirta et al. This work is published and licensed by Dove Medical Press Limited

                The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed.

                History
                Categories
                Original Research

                Medicine
                patient influence,disease awareness,treatment decision-making,patient-reported outcomes,disease-specific program,real world

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