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Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study.

ABSTRACT: Background. The decision to receive a permanent left ventricular assist device (LVAD) to treat end-stage heart failure (HF) involves understanding and weighing the risks and benefits of a highly invasive treatment. The goal of this study was to characterize end-stage HF patients across parameters that may affect their decision making and to inform the development of an LVAD decision support tool. Methods. A survey of 35 end-stage HF patients at an LVAD implant hospital was performed to characterize their information-seeking habits, interaction with physicians, technology use, numeracy, and concerns about their health. Survey responses were analyzed using descriptive statistics, grounded theory method, and Bayesian network learning. Results. Most patients indicated an interest in using some type of decision support tool (roadmap of health progression: 46%, n = 16; personal prognosis: 51%, n = 18; short videos of patients telling stories of their experiences with an LVAD: 57%, n = 20). Information patients desired in a hypothetical decision support tool fell into the following topics: prognoses for health outcomes, technical information seeking, expressing emotions, and treatment decisions. Desire for understanding their condition was closely related to whether they had difficult interpreting their electronic medical record in the past. Conclusions. Most patients reported interest in engaging in their health care decision making and seeing their prognosis and electronic health record information. Patients who were less interested in their own treatment decisions were characterized by having less success understanding their health information. Design of a decision support tool for potential LVAD patients should consider a spectrum of health literacy and include information beyond the technical specifications of LVAD support.

SUBMITTER: Lohmueller LC

PROVIDER: S-EPMC6699010 | biostudies-literature | 2019 Jul-Dec

REPOSITORIES: biostudies-literature

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Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study.

Lohmueller Lisa Carey LC Naik Aakanksha A Breitfeller Luke L McIlvennan Colleen K CK Kanwar Manreet M Murali Srinivas S Rosé Carolyn C Antaki James F JF

MDM policy & practice 20190701 2

<b>Background.</b> The decision to receive a permanent left ventricular assist device (LVAD) to treat end-stage heart failure (HF) involves understanding and weighing the risks and benefits of a highly invasive treatment. The goal of this study was to characterize end-stage HF patients across parameters that may affect their decision making and to inform the development of an LVAD decision support tool. <b>Methods.</b> A survey of 35 end-stage HF patients at an LVAD implant hospital was performe ...[more]

PMID: 31453361

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Project description:BackgroundAdult chronic heart failure mainly affects an elderly population with multiple comorbidities that often require frequent medical visits to prevent poor health outcomes. However, the heart failure disease process reduces their independence by reducing mobility, exercise tolerance, and cognitive decline. Remote care technologies can bridge the gap in care for these patients by allowing them to be followed up within the comfort of their home and encourage their self-care. However, patients, carers, and health care professionals need to engage with the technology for it to be useful.ObjectiveThis systematic review explores qualitative primary studies of remote care technologies used in heart failure, to determine the factors that affect user engagement with the technology. This is explored from the perspective of patients, carers, and health care professionals.MethodsRelevant studies published between January 1, 1990, and September 19, 2020, were identified from EMBASE, Ovid MEDLINE, PubMed, Cochrane Library, and Scopus. These studies were then synthesized using thematic analysis. Relevant user experiences with remote care were extracted using line-by-line coding. These codes were summarized into secondary codes and core concepts, which were further merged into overarching themes that encapsulate user experience with remote care.ResultsThe review included 47 studies, which led to the generation of 5 overarching themes that affect engagement: (1) "Convenience" relates to time saved by the intervention; (2) "Clinical Care" relates to perceived quality of care and health outcomes; (3) "Communication" involves feedback and interaction between patients, staff, and carers; (4) "Education" concerns the tailored information provided; and (5) "Ease of Use" relates to accessibility and technical barriers to engagement. Each theme was applied to each user base of patient, carer, and health care professional in a different manner.ConclusionsThe 5 themes identified highlight aspects of remote care that facilitate engagement, and should be considered in both future design and trials evaluating these technologies.

Dataset Information

Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study.

Publications

Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study.

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