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

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 th...
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Autor*in:	Lisa Carey Lohmueller [verfasserIn] Aakanksha Naik [verfasserIn] Luke Breitfeller [verfasserIn] Colleen K. McIlvennan [verfasserIn] Manreet Kanwar [verfasserIn] Srinivas Murali [verfasserIn] Carolyn Rosé [verfasserIn] James F. Antaki [verfasserIn]

Format:	E-Artikel
Sprache:	Englisch

Erschienen:	2019

Übergeordnetes Werk:	In: MDM Policy & Practice - SAGE Publishing, 2017, 4(2019)
Übergeordnetes Werk:	volume:4 ; year:2019

Links:	Link aufrufen Link aufrufen Link aufrufen Journal toc

DOI / URN:	10.1177/2381468319865515

Katalog-ID:	DOAJ03950879X

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520			\|a 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.
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allfields	10.1177/2381468319865515 doi (DE-627)DOAJ03950879X (DE-599)DOAJ35cea6379ea04778af670c859a59dcad DE-627 ger DE-627 rakwb eng R5-920 Lisa Carey Lohmueller verfasserin aut Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study 2019 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Aakanksha Naik verfasserin aut Luke Breitfeller verfasserin aut Colleen K. McIlvennan verfasserin aut Manreet Kanwar verfasserin aut Srinivas Murali verfasserin aut Carolyn Rosé verfasserin aut James F. Antaki verfasserin aut In MDM Policy & Practice SAGE Publishing, 2017 4(2019) (DE-627)86290014X (DE-600)2861432-X 23814683 nnns volume:4 year:2019 https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/article/35cea6379ea04778af670c859a59dcad kostenfrei https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/toc/2381-4683 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2019
spelling	10.1177/2381468319865515 doi (DE-627)DOAJ03950879X (DE-599)DOAJ35cea6379ea04778af670c859a59dcad DE-627 ger DE-627 rakwb eng R5-920 Lisa Carey Lohmueller verfasserin aut Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study 2019 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Aakanksha Naik verfasserin aut Luke Breitfeller verfasserin aut Colleen K. McIlvennan verfasserin aut Manreet Kanwar verfasserin aut Srinivas Murali verfasserin aut Carolyn Rosé verfasserin aut James F. Antaki verfasserin aut In MDM Policy & Practice SAGE Publishing, 2017 4(2019) (DE-627)86290014X (DE-600)2861432-X 23814683 nnns volume:4 year:2019 https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/article/35cea6379ea04778af670c859a59dcad kostenfrei https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/toc/2381-4683 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2019
allfields_unstemmed	10.1177/2381468319865515 doi (DE-627)DOAJ03950879X (DE-599)DOAJ35cea6379ea04778af670c859a59dcad DE-627 ger DE-627 rakwb eng R5-920 Lisa Carey Lohmueller verfasserin aut Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study 2019 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Aakanksha Naik verfasserin aut Luke Breitfeller verfasserin aut Colleen K. McIlvennan verfasserin aut Manreet Kanwar verfasserin aut Srinivas Murali verfasserin aut Carolyn Rosé verfasserin aut James F. Antaki verfasserin aut In MDM Policy & Practice SAGE Publishing, 2017 4(2019) (DE-627)86290014X (DE-600)2861432-X 23814683 nnns volume:4 year:2019 https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/article/35cea6379ea04778af670c859a59dcad kostenfrei https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/toc/2381-4683 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2019
allfieldsGer	10.1177/2381468319865515 doi (DE-627)DOAJ03950879X (DE-599)DOAJ35cea6379ea04778af670c859a59dcad DE-627 ger DE-627 rakwb eng R5-920 Lisa Carey Lohmueller verfasserin aut Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study 2019 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Aakanksha Naik verfasserin aut Luke Breitfeller verfasserin aut Colleen K. McIlvennan verfasserin aut Manreet Kanwar verfasserin aut Srinivas Murali verfasserin aut Carolyn Rosé verfasserin aut James F. Antaki verfasserin aut In MDM Policy & Practice SAGE Publishing, 2017 4(2019) (DE-627)86290014X (DE-600)2861432-X 23814683 nnns volume:4 year:2019 https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/article/35cea6379ea04778af670c859a59dcad kostenfrei https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/toc/2381-4683 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2019
allfieldsSound	10.1177/2381468319865515 doi (DE-627)DOAJ03950879X (DE-599)DOAJ35cea6379ea04778af670c859a59dcad DE-627 ger DE-627 rakwb eng R5-920 Lisa Carey Lohmueller verfasserin aut Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study 2019 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine (General) Aakanksha Naik verfasserin aut Luke Breitfeller verfasserin aut Colleen K. McIlvennan verfasserin aut Manreet Kanwar verfasserin aut Srinivas Murali verfasserin aut Carolyn Rosé verfasserin aut James F. Antaki verfasserin aut In MDM Policy & Practice SAGE Publishing, 2017 4(2019) (DE-627)86290014X (DE-600)2861432-X 23814683 nnns volume:4 year:2019 https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/article/35cea6379ea04778af670c859a59dcad kostenfrei https://doi.org/10.1177/2381468319865515 kostenfrei https://doaj.org/toc/2381-4683 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_206 GBV_ILN_213 GBV_ILN_230 GBV_ILN_285 GBV_ILN_293 GBV_ILN_374 GBV_ILN_602 GBV_ILN_2014 GBV_ILN_2034 GBV_ILN_2068 GBV_ILN_2704 GBV_ILN_2707 GBV_ILN_2890 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4242 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 4 2019
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topic_title	R5-920 Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study
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title	Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study
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title_sort	factors affecting health care engagement of patients with end-stage heart failure: an exploratory survey study
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title_auth	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.
abstractGer	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.
abstract_unstemmed	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.
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title_short	Factors Affecting Health Care Engagement of Patients With End-Stage Heart Failure: An Exploratory Survey Study
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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. 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