Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 pa... more Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 patients enrolled in a randomized trial, we interviewed 37 users about benefits, barriers and recommendations for program improvements. User preferences included 1) addressing differences in types of users, 2) sending out alerts when new information is available, and 3) providing more oversight of user diary data.
Latino and African American standardized patients bring diversity and authenticity to the instruc... more Latino and African American standardized patients bring diversity and authenticity to the instructional and assessment mission of standardized patient programs. However, minority standardized patients are often difficult to recruit and retain and may require different training strategies to maximize their performance and recall potential. The purpose of this study is to identify important factors that affect the recruitment, retention, and training of African American, and Latino Standardized Patients (SPs) in two medical schools.
Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) are asso... more Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) are associated with potential harm. This study aims to understand the patient's perspective about factors important in their decision about receiving an ICD for the primary prevention of sudden cardiac death. Method: This qualitative study utilized open-ended in-depth interviews with 20 patients who have been offered an ICD. We recruited patients who both did and did not decide to proceed with ICD implantation. Interviews were recorded and transcribed and data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. Results: Our sample included 20 patients (13 with ICDs; 7 who declined ICDs). Patients with ICDs reported that they discovered some of the risks of the device post-implantation, saw the device as an insurance policy, and felt it was important to follow the physicians' recommendations. Patients who refused ICDs reported that th...
Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) have pot... more Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) have potential risks. This study aims to understand cardiologists' perspectives about the factors important in their decision to recommend ICD implantation for the primary prevention of sudden cardiac death. Method: This qualitative study utilized open-ended in-depth interviews with 12 cardiologists (including 4 electrophysiologists) with experience in counseling patients surrounding ICD decision making. The interviews were recorded and transcribed and the data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. Results: Study cardiologists reported that the ICD mortality benefit should be conveyed to all patients; they assume that patients want this mortality benefit (table). Cardiologists also reported that the following ICD risks should be mentioned at the time of implantation: inappropriate shocks, cosmetic concerns, procedural compl...
Purpose: Patients nearing the end of their lives face an array of difficult decisions. This pilot... more Purpose: Patients nearing the end of their lives face an array of difficult decisions. This pilot study was designed to assess the feasibility and acceptability of a novel decision aid (DA) applied to patients on a hospital-based palliative care (PC) service. Methods: We conducted a pilot randomized controlled trial of the Looking Ahead: choices for medical care when you’re seriously ill DA (booklet and DVD) developed by the Foundation for Informed Medical Decision Making. All adult, English-speaking patients (or their decision makers in the case of patient incapacity) on the hospital PC consult service were potentially eligible. Patients were not approached if they were in isolation, did not speak English, or if the physicians felt they were not appropriate due to issues such as family conflict or active death. Patients in both study arms received standard PC consultation. Participants in the intervention arm also received a copy of the DA. Participants were interviewed at baseline...
Pacing and clinical electrophysiology : PACE, 2011
Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, th... more Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, they are also associated with potential risks. Periprocedural decision making requires understanding both benefits and risks. This qualitative study aims to understand cardiologists' and patients' perspectives about decision making surrounding ICD implantation using semi-structured, in-depth interviews. We interviewed 11 cardiologists (including four electrophysiologists) and 20 patients (14 with ICDs; six who declined ICDs). The data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. Cardiologists emphasized the benefits of ICD therapy but varied substantially in the extent to which they emphasized the various risks associated with ICD implantation with patients. Cardiologists indicated that they were influenced by the benefits of therapy as presented in published guidelines. Many patients who chose to receive an ICD indicate...
Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 pa... more Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 patients enrolled in a randomized trial, we interviewed 37 users about benefits, barriers and recommendations for program improvements. User preferences included 1) addressing differences in types of users, 2) sending out alerts when new information is available, and 3) providing more oversight of user diary data.
Heart & Lung: The Journal of Acute and Critical Care, 2015
To understand mechanical circulatory support (MCS) coordinators&a... more To understand mechanical circulatory support (MCS) coordinators' perspectives related to destination therapy left ventricular assist devices (DT LVAD) decision making. MCS coordinators are central to the team that interacts with patients considering DT LVAD, and are well positioned to comment upon the pre-implantation process. From August 2012 to January 2013, MCS coordinators were recruited to participate in semi-structured, in-depth interviews. Established qualitative approaches were used to analyze and interpret data. Eighteen MCS coordinators from 18 programs were interviewed. We found diversity in coordinators' roles and high programmatic variability in how DT LVAD decisions are approached. Despite these differences, three themes were consistently recommended: 1) DT LVAD is a major patient-centered decision: "you're your best advocate… this may not be the best choice for you"; 2) this decision benefits from an iterative, multidisciplinary process: "It is not a one-time conversation"; and 3) this process involves a tension between conveying enough detail about the process yet not overwhelming patients: "It's sometimes hard to walk that line to not scare them but not paint a rainbow and butterflies picture." MCS coordinators endorsed a shared decision-making process that starts early, uses non-biased educational materials, and involves a multidisciplinary team sensitive to the tension between conveying enough detail about the therapy yet not overwhelming patients.
Advance care planning often only focuses on written advance directives rather than on future goal... more Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. This was a cross-sectional study using qualitative methods. Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. Participants were asked in individual, semi-structured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.
Patients with advanced serious illness face many complex decisions. Patient decision aids (PtDAs)... more Patients with advanced serious illness face many complex decisions. Patient decision aids (PtDAs) can help with complex decision making but are underutilized. This study assessed barriers and facilitators to the use of a PtDA designed for serious illness. Providers and patients were asked about their experiences in making decisions around serious illness and their opinions towards the PtDA. Seven focus groups were digitally recorded, transcribed and analysed using a general qualitative inductive method. Domain 1 - clinical context within which the PtDA would be utilized including three themes: (1a) role: PtDA might compete with the physician's role; (1b) logistics: it was unclear when and how such a PtDA should be implemented; and (1c) meaning: what it will mean to the patient if the physician recommends viewing of this PtDA. Domain 2 - broader global context: (2a) death-denying culture; and (2b) physician concerns that the PtDA was biased towards palliative care. Physicians' concerns were rooted in deeper concerns about palliative care and a death-denying culture. Patients were more open to using the PtDA than physicians, suggesting 'it's never too early'. PtDAs for serious illness can maximize early opportunities for goals of care conversations and shared decision making.
Circulation: Cardiovascular Quality and Outcomes, 2014
Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medic... more Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. Between October 2012 and September 2013, we conducted semistructured, in-depth interviews to understand patients' decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being automatic and others (3 accepters, 7 decliners) being reflective in their approach to decision making. The automatic group was characterized by a fear of dying and an over-riding desire to live as long as possible: "[LVAD] was the only option I had…that or push up daisies…so I automatically took this." By contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: "There are worse things than death." Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision.
Few studies have examined the impact of cancer on the survivor&am... more Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.
With increased focus on improving surgical care quality, understanding structures and processes t... more With increased focus on improving surgical care quality, understanding structures and processes that influence surgical care is timely and important, as is more precise specification of these through improved measurement. We conducted a qualitative study to help design a quantitative survey of structures and processes of surgical care. We audiotaped 44 face-to-face interviews with surgical care leaders and other diverse members of the surgical care team from 6 hospitals (two Veterans Affairs, four private sector). Qualitative interviews were transcribed and analyzed to identify common structures and processes mentioned by interviewees to include on a quantitative survey and to develop a rich description of salient themes on indicators of effective surgical care services and surgical care teams. Qualitative analyses of transcripts resulted in detailed descriptions of structures and processes of surgical care services that affected surgical care team performance--and how particular structures led to effective and ineffective processes that impacted quality and outcomes of surgical care. Communication and care coordination were most frequently mentioned as essential to effective surgical care services and teams. Informants also described other influences on surgical quality and outcomes, such as staffing, the role of residents, and team composition and continuity. Surgical care team members reinforced the importance of understanding surgical care processes and structures to improve both quality and outcomes of surgical care. The analysis of interviews helped the study team identify potential measures of structures and processes to include in our quantitative survey.
Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 pa... more Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 patients enrolled in a randomized trial, we interviewed 37 users about benefits, barriers and recommendations for program improvements. User preferences included 1) addressing differences in types of users, 2) sending out alerts when new information is available, and 3) providing more oversight of user diary data.
Latino and African American standardized patients bring diversity and authenticity to the instruc... more Latino and African American standardized patients bring diversity and authenticity to the instructional and assessment mission of standardized patient programs. However, minority standardized patients are often difficult to recruit and retain and may require different training strategies to maximize their performance and recall potential. The purpose of this study is to identify important factors that affect the recruitment, retention, and training of African American, and Latino Standardized Patients (SPs) in two medical schools.
Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) are asso... more Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) are associated with potential harm. This study aims to understand the patient's perspective about factors important in their decision about receiving an ICD for the primary prevention of sudden cardiac death. Method: This qualitative study utilized open-ended in-depth interviews with 20 patients who have been offered an ICD. We recruited patients who both did and did not decide to proceed with ICD implantation. Interviews were recorded and transcribed and data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. Results: Our sample included 20 patients (13 with ICDs; 7 who declined ICDs). Patients with ICDs reported that they discovered some of the risks of the device post-implantation, saw the device as an insurance policy, and felt it was important to follow the physicians' recommendations. Patients who refused ICDs reported that th...
Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) have pot... more Purpose: Despite their mortality benefit, Implantable Cardioverter Defibrillators (ICDs) have potential risks. This study aims to understand cardiologists' perspectives about the factors important in their decision to recommend ICD implantation for the primary prevention of sudden cardiac death. Method: This qualitative study utilized open-ended in-depth interviews with 12 cardiologists (including 4 electrophysiologists) with experience in counseling patients surrounding ICD decision making. The interviews were recorded and transcribed and the data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. Results: Study cardiologists reported that the ICD mortality benefit should be conveyed to all patients; they assume that patients want this mortality benefit (table). Cardiologists also reported that the following ICD risks should be mentioned at the time of implantation: inappropriate shocks, cosmetic concerns, procedural compl...
Purpose: Patients nearing the end of their lives face an array of difficult decisions. This pilot... more Purpose: Patients nearing the end of their lives face an array of difficult decisions. This pilot study was designed to assess the feasibility and acceptability of a novel decision aid (DA) applied to patients on a hospital-based palliative care (PC) service. Methods: We conducted a pilot randomized controlled trial of the Looking Ahead: choices for medical care when you’re seriously ill DA (booklet and DVD) developed by the Foundation for Informed Medical Decision Making. All adult, English-speaking patients (or their decision makers in the case of patient incapacity) on the hospital PC consult service were potentially eligible. Patients were not approached if they were in isolation, did not speak English, or if the physicians felt they were not appropriate due to issues such as family conflict or active death. Patients in both study arms received standard PC consultation. Participants in the intervention arm also received a copy of the DA. Participants were interviewed at baseline...
Pacing and clinical electrophysiology : PACE, 2011
Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, th... more Although implantable cardioverter-defibrillators (ICDs) reduce mortality in selected patients, they are also associated with potential risks. Periprocedural decision making requires understanding both benefits and risks. This qualitative study aims to understand cardiologists' and patients' perspectives about decision making surrounding ICD implantation using semi-structured, in-depth interviews. We interviewed 11 cardiologists (including four electrophysiologists) and 20 patients (14 with ICDs; six who declined ICDs). The data were analyzed through the theoretical lens of patient-centered care using the constant comparative method. Cardiologists emphasized the benefits of ICD therapy but varied substantially in the extent to which they emphasized the various risks associated with ICD implantation with patients. Cardiologists indicated that they were influenced by the benefits of therapy as presented in published guidelines. Many patients who chose to receive an ICD indicate...
Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 pa... more Diabetes-STAR is a disease management program integrated with an online patient portal. Of 331 patients enrolled in a randomized trial, we interviewed 37 users about benefits, barriers and recommendations for program improvements. User preferences included 1) addressing differences in types of users, 2) sending out alerts when new information is available, and 3) providing more oversight of user diary data.
Heart & Lung: The Journal of Acute and Critical Care, 2015
To understand mechanical circulatory support (MCS) coordinators&a... more To understand mechanical circulatory support (MCS) coordinators' perspectives related to destination therapy left ventricular assist devices (DT LVAD) decision making. MCS coordinators are central to the team that interacts with patients considering DT LVAD, and are well positioned to comment upon the pre-implantation process. From August 2012 to January 2013, MCS coordinators were recruited to participate in semi-structured, in-depth interviews. Established qualitative approaches were used to analyze and interpret data. Eighteen MCS coordinators from 18 programs were interviewed. We found diversity in coordinators' roles and high programmatic variability in how DT LVAD decisions are approached. Despite these differences, three themes were consistently recommended: 1) DT LVAD is a major patient-centered decision: "you're your best advocate… this may not be the best choice for you"; 2) this decision benefits from an iterative, multidisciplinary process: "It is not a one-time conversation"; and 3) this process involves a tension between conveying enough detail about the process yet not overwhelming patients: "It's sometimes hard to walk that line to not scare them but not paint a rainbow and butterflies picture." MCS coordinators endorsed a shared decision-making process that starts early, uses non-biased educational materials, and involves a multidisciplinary team sensitive to the tension between conveying enough detail about the therapy yet not overwhelming patients.
Advance care planning often only focuses on written advance directives rather than on future goal... more Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. This was a cross-sectional study using qualitative methods. Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. Participants were asked in individual, semi-structured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.
Patients with advanced serious illness face many complex decisions. Patient decision aids (PtDAs)... more Patients with advanced serious illness face many complex decisions. Patient decision aids (PtDAs) can help with complex decision making but are underutilized. This study assessed barriers and facilitators to the use of a PtDA designed for serious illness. Providers and patients were asked about their experiences in making decisions around serious illness and their opinions towards the PtDA. Seven focus groups were digitally recorded, transcribed and analysed using a general qualitative inductive method. Domain 1 - clinical context within which the PtDA would be utilized including three themes: (1a) role: PtDA might compete with the physician's role; (1b) logistics: it was unclear when and how such a PtDA should be implemented; and (1c) meaning: what it will mean to the patient if the physician recommends viewing of this PtDA. Domain 2 - broader global context: (2a) death-denying culture; and (2b) physician concerns that the PtDA was biased towards palliative care. Physicians' concerns were rooted in deeper concerns about palliative care and a death-denying culture. Patients were more open to using the PtDA than physicians, suggesting 'it's never too early'. PtDAs for serious illness can maximize early opportunities for goals of care conversations and shared decision making.
Circulation: Cardiovascular Quality and Outcomes, 2014
Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medic... more Destination therapy left ventricular assist devices (DT LVADs) are one of the most invasive medical interventions for end-stage illness. How patients decide whether or not to proceed with device implantation is unknown. We aimed to understand the decision-making processes of patients who either accept or decline DT LVADs. Between October 2012 and September 2013, we conducted semistructured, in-depth interviews to understand patients' decision-making experiences. Data were analyzed using a mixed inductive and deductive approach. Twenty-two eligible patients were interviewed, 15 with DT LVADs and 7 who declined. We found a strong dichotomy between decision processes with some patients (11 accepters) being automatic and others (3 accepters, 7 decliners) being reflective in their approach to decision making. The automatic group was characterized by a fear of dying and an over-riding desire to live as long as possible: "[LVAD] was the only option I had…that or push up daisies…so I automatically took this." By contrast, the reflective group went through a reasoned process of weighing risks, benefits, and burdens: "There are worse things than death." Irrespective of approach, most patients experienced the DT LVAD decision as a highly emotional process and many sought support from their families or spiritually. Some patients offered a DT LVAD face the decision by reflecting on a process and reasoning through risks and benefits. For others, the desire to live supersedes such reflective processing. Acknowledging this difference is important when considering how to support patients who are faced with this complex decision.
Few studies have examined the impact of cancer on the survivor&am... more Few studies have examined the impact of cancer on the survivor's quality of work life. The purpose of this qualitative study is to describe the work experiences among a diverse group of cancer survivors and to explore factors influencing decisions about work after cancer diagnosis and treatment. We interviewed 28 participants with a broad range of socioeconomic backgrounds and primary cancer sites. Qualitative results indicate that after learning about their cancer diagnosis, participants had diverse and complex patterns of work return and work change, and experienced a variety of factors that influenced post-cancer decisions. Experiences at work after cancer also varied in relation to how others responded, changes in productivity, effects of cancer and treatment on work, and feelings about work. Most respondents received little guidance from their physicians about work, and many participants described their cancer as impacting their priority of work relative to other aspects of their lives. Our findings reinforce the complexity of measuring employment outcomes and the range of adaptations made to improve the quality of work life. Additional research is needed to identify prognostic factors that can guide clinical or workplace efforts to restore cancer survivors to their desired level of work function and economic productivity.
With increased focus on improving surgical care quality, understanding structures and processes t... more With increased focus on improving surgical care quality, understanding structures and processes that influence surgical care is timely and important, as is more precise specification of these through improved measurement. We conducted a qualitative study to help design a quantitative survey of structures and processes of surgical care. We audiotaped 44 face-to-face interviews with surgical care leaders and other diverse members of the surgical care team from 6 hospitals (two Veterans Affairs, four private sector). Qualitative interviews were transcribed and analyzed to identify common structures and processes mentioned by interviewees to include on a quantitative survey and to develop a rich description of salient themes on indicators of effective surgical care services and surgical care teams. Qualitative analyses of transcripts resulted in detailed descriptions of structures and processes of surgical care services that affected surgical care team performance--and how particular structures led to effective and ineffective processes that impacted quality and outcomes of surgical care. Communication and care coordination were most frequently mentioned as essential to effective surgical care services and teams. Informants also described other influences on surgical quality and outcomes, such as staffing, the role of residents, and team composition and continuity. Surgical care team members reinforced the importance of understanding surgical care processes and structures to improve both quality and outcomes of surgical care. The analysis of interviews helped the study team identify potential measures of structures and processes to include in our quantitative survey.
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