Kathlyn Fletcher, MD

Thirty-six million people are hospitalized annually in the United States,¹ and a significant proportion of these patients are rehospitalized within 30 days.² Gaps in hospital care are many and well documented, including high rates of adverse events, hospital-acquired conditions, and suboptimal care transitions.^3-5 Despite significant efforts to improve the care of hospitalized patients and some incremental improvement in the safety of hospital care, hospital care remains suboptimal.^6-9 Importantly, hospitalization remains a challenging and vulnerable time for patients and caregivers.

Despite research efforts to improve hospital care, there remains very little data regarding what patients, caregivers, and other stakeholders believe are the most important priorities for improving hospital care, experiences, and outcomes. Small studies described in brief reports provide limited insights into what aspects of hospital care are most important to patients and to their families.^10-13 These small studies suggest that communication and the comfort of caregivers and of patient family members are important priorities, as are the provision of adequate sleeping arrangements, food choices, and psychosocial support. However, the limited nature of these studies precludes the possibility of larger conclusions regarding patient priorities.^10-13

The evolution of patient-centered care has led to increasing efforts to engage, and partner, with patients, caregivers, and other stakeholders to obtain their input on healthcare, research, and improvement efforts.¹⁴ The guiding principle of this engagement is that patients and their caregivers are uniquely positioned to share their lived experiences of care and that their involvement ensures their voices are represented.^15-17 Therefore to obtain greater insight into priority areas from the perspectives of patients, caregivers, and other healthcare stakeholders, we undertook a systematic engagement process to create a patient-partnered and stakeholder-­partnered research agenda for improving the care of hospitalized adult patients.

Guiding Frameworks for Study Methods

We used two established, validated methods to guide our collaborative, inclusive, and consultative approach to patient and stakeholder engagement and research prioritization:

• The Patient-Centered Outcomes Research Institute (PCORI) standards for formulating patient-centered research questions,¹⁸ which includes methods for stakeholder engagement that ensures the representativeness of engaged groups and dissemination of study results.¹⁸
• The James Lind Alliance (JLA) approach to “priority setting partnerships,” through which patients, caregivers, and clinicians partner to identify and prioritize unanswered questions.¹⁹

The Improving Hospital Outcomes through Patient Engagement (i-HOPE) study included eight stepwise phases to formulate and prioritize a set of patient-centered research questions to improve the care and experiences of hospitalized patients and their families.²⁰ Our process is described below and summarized in Table 1.

Phases of Question Development

Phase 1: Steering Committee Formation

Nine clinical researchers, nine patients and/or caregivers, and two administrators from eight academic and community hospitals from across the United States formed a steering committee to participate in teleconferences every other week to manage all stages of the project including design, implementation, and dissemination. At the time of the project conceptualization, the researchers were a subgroup of the Society of Hospital Medicine Research Committee.²¹ Patient partners on the steering committee were identified from local patient and family advisory councils (PFACs) of the researchers’ institutions. Patients partners had previously participated in research or improvement initiatives with their hospitalist partners. Patient partners received stipends throughout the project in recognition of their participation and expertise. Included in the committee was a representative from the Society of Hospital Medicine (SHM)—our supporting and dissemination partner.

Phase 2: Stakeholder Identification

We created a list of potential stakeholder organizations to participate in the study based on the following:

• Organizations with which SHM has worked on initiatives related to the care of hospitalized adult patients
• Organizations with which steering committee members had worked
• Internet searches of organizations participating in similar PCORI-funded projects and of other professional societies that represented patients or providers who work in hospital or post-acute care settings
• Suggestions from stakeholders identified through the first two approaches as described above

We intended to have a broad representation of stakeholders to ensure diverse perspectives were included in the study. Stakeholder organizations included patient advocacy groups, providers, researchers, payers, policy makers and funding agencies.

Phase 3: Stakeholder Engagement and Awareness Training

Representatives from 39 stakeholder organizations who agreed to participate in the study were further orientated to the study rationale and methods via a series of interactive online webinars. This included reminding organziations that everyone’s input and perspective were valued and that we had a flat organization structure that ensured all stakeholders were equal.

Phase 4: Survey Development and Administration

We chose a survey approach to solicit input on identifying gaps in patient care and to generate research questions. The steering committee developed an online survey collaboratively with stakeholder organization representatives. We used survey pretesting with patient and researcher members from the steering committee. The goal of pretesting was to ensure accessibility and comprehension for all potential respondents, particularly patients and caregivers. The final survey asked respondents to record up to three questions that they thought would improve the care of hospitalized adult patients and their families. The specific wording of the survey is shown in the Figure and the entire survey in Appendix Document 1.

We chose three questions because that is the number of entries per participant that is recommended by JLA; it also minimizes responder burden.¹⁹ We asked respondents to identify the stakeholder group they represented (eg, patient, caregiver, healthcare provider, researcher) and for providers to identify where they primarily worked (eg, acute care hospital, post-acute care, advocacy group).

Survey Administration. We administered the survey electronically using Research Electronic Data Capture (REDCap), a secure web-based application used for collecting research data.²² Stakeholders were asked to disseminate the survey broadly using whatever methods that they felt was appropriate to their leadership or members.

Phase 5: Initial Question Categorization Using Qualitative Content Analysis

Six members of the steering committee independently performed qualitative content analysis to categorize all submitted questions.^23,24 This analytic approach identifies, analyzes, and reports patterns within the data.^23,24 We hypothesized that some of the submitted questions would relate to already-­known problems with hospitalization. Therefore the steering committee developed an a priori codebook of 48 categories using common systems-based issues and diseases related to the care of hospitalized patients based on the hospitalist core competency topics developed by hospitalists and the SHM Education Committee,²⁵ personal and clinical knowledge and experience related to the care of hospitalized adult patients, and published literature on the topic. These a priori categories and their definitions are shown in Appendix Document 2 and were the basis for our initial theory-driven (deductive) approach to data analysis.²³

Once coding began, we identified 32 new and additional categories based on our review of the submitted questions, and these were the basis of our data-driven (inductive) approach to analysis.²³ All proposed new codes and definitions were discussed with and approved by the entire steering committee prior to being added to the codebook (Appendix Document 2).

While coding categories were mutually exclusive, multiple codes could be attributed to a question depending on the content and meaning of a question. To ensure methodological rigor, reviewers met regularly via teleconference or communicated via email throughout the analysis to iteratively refine and define coding categories. All questions were reviewed independently, and then discussed, by at least two members of the analysis team. Any coding disparities were discussed and resolved by negotiated consensus.²⁶ Analysis was conducted using Dedoose V8.0.35 (Sociocultural Research Consultants, Los Angeles, California).

Phase 6: Initial Question Identification Using Quantitative Content Analysis

Following thematic categorization, all steering committee members then reviewed each category to identify and quantify the most commonly submitted questions.²⁷ A question was determined to be a commonly submitted question when it appeared at least 10 times.

Phase 7: Interim Priority Setting

We sent the list of the most commonly submitted questions (Appendix Document 3) to stakeholder organizations and patient partner networks for review and evaluation. Each organization was asked to engage with their constituents and leaders to collectively decide on which of these questions resonated and was most important. These preferences would then be used during the in-person meeting (Phase 8). We did not provide stakeholder organizations with information about how many times each question was submitted by respondents because we felt this could potentially bias their decision-making processes such that true importance and relevance would not obtained.

Phase 8: In-person Meeting for Final Question Prioritization and Refinement

Representatives from all 39 participating stakeholder organizations were invited to participate in a 2-day, in-person meeting to create a final prioritized list of questions to be used to guide patient-centered research seeking to improve the care of hospitalized adult patients and their caregivers. This meeting was attended by 43 stakeholders (26 stakeholder organization representatives and 17 steering committee members) from 37 unique stakeholder organizations. To facilitate the inclusiveness and to ensure a consensus-driven process, we used nominal group technique (NGT) to allow all of the meeting participants to discuss the list of prioritized questions in small groups.²⁸ NGT allows participants to comprehend each other’s point of view to ensure no perpsectives are excluded.²⁸ The NGT was followed by two rounds of individual voting. Stakeholders were then asked to frame their discussions and their votes based on the perspectives of their organizations or PFACs that they represent. The voting process required participants to make choices regarding the relative importance of all of the questions, which therefore makes the resulting list a true prioritized list. In the first round of voting, participants voted for up to five questions for inclusion on the prioritized list. Based on the distribution of votes, where one vote equals one point, each of the 36 questions was then ranked in order of the assigned points. The rank-ordering process resulted in a natural cut point or delineated point, resulting in the 11 questions considered to be the highest prioritized questions. Following this, a second round of voting took place with the same parameters as the first round and allowed us to rank order questions by order of importance and priority. Finally, during small and large group discussions, the original text of each question was edited, refined, and reformatted into questions that could drive a research agenda.

Ethical Oversight

This study was reviewed by the Institutional Review Board of the University of Texas Health Science Center at San Antonio and deemed not to be human subject research (UT Health San Antonio IRB Protocol Number: HSC20170058N).

In total, 499 respondents from 39 unique stakeholder organizations responded to our survey. Respondents self-identified into multiple categorizes resulting in 267 healthcare providers, 244 patients and caregivers, and 63 researchers. Characteristics of respondents to the survey are shown in Table 2.

An overview of study results is shown in Table 1. Respondents submitted a total of 782 questions related to improving the care of hospitalized patients. These questions were categorized during thematic analysis into 70 distinct categories—52 that were health system related and 18 that were disease specific (Appendix 2). The most frequently used health system–related categories were related to discharge care transitions, medications, patient understanding, and patient-family-care team communication (Appendix 2).

From these categories, 36 questions met our criteria for “commonly identified,” ie, submitted at least 10 times (Appendix Document 3). Notably, these 36 questions were derived from 67 different coding categories, of which 24 (36%) were a priori (theory-driven) categories²³ created by the Steering Committee before analysis began and 43 (64%) categories were created as a result of this study’s stakeholder-engaged process and a data-driven approach²³ to analysis (Appendix Document 3). These groups of questions were then presented during the 2-day, in-person meeting and reduced to a final 11 questions that were identified in rank order as top priorities (Table 3). The questions considered highest priority related to ensuring shared treatment and goals of care decision making, improving hospital discharge handoff to other care facilities and providers, and reducing the confusion related to education on medications, conditions, hospital care, and discharge.

Using a dynamic and collaborative stakeholder engagement process, we identified 11 questions prioritized in order of importance by patients, caregivers, and other healthcare stakeholders to improve the care of hospitalized adult patients. While some of the topics identified are already well-known topics in need of research and improvement, our findings frame these topics according to the perspectives of patients, caregivers, and stakeholders. This unique perspective adds a level of richness and nuance that provides insight into how to better address these topics and ultimately inform research and quality improvement efforts.

The question considered to be the highest priority area for future research and improvement surmised how it may be possible to implement interventions that engage patients in shared decision making. Shared decision making involves patients and their care team working together to make decisions about treatment, and other aspects of care based on sound clinical evidence that balances the risks and outcomes with patient preferences and values. Although considered critically important,²⁹ a recent evaluation of shared decision making practices in over 250 inpatient encounters identified significant gaps in physicians’ abilities to perform key elements of a shared decision making approach and reinforced the need to identify what strategies can best promote widespread shared decision making.³⁰ While there has been considerable effort to faciliate shared decision making in practice, there remains mixed evidence regarding the sustainability and impact of tools seeking to support shared decision making, such as decision aids, question prompt lists, and coaches.³¹ This suggests that new approaches to shared decision making may be required and likely explains why this question was rated as a top priority by stakeholders in the current study.

Respondents frequently framed their questions in terms of their lived experiences, providing stories and scenarios to illustrate the importance of the questions they submitted. This personal framing highlighted to us the need to think about improving care delivery from the end-user perspective. For example, respondents framed questions about care transitions not with regard to early appointments, instructions, or medication lists, but rather in terms of whom to call with questions or how best to reach their physician, nurse, or other identified provider. These perspectives suggest that strategies and approaches to improvement that start with patient and caregiver experiences, such as design thinking,³² may be important to continued efforts to improve hospital care. Additionally, the focus on the interpersonal aspects of care delivery highlights the need to focus on the patient-provider relationship and communication.

Questions submitted by respondents demonstrated a stark difference between “patient education” and “patient understanding,” which suggests that being provided with education or education materials regarding care did not necessarily lead to a clear patient understanding. The potential for lack of understanding was particularly prominent in the context of care plan development and during times of care transition—topics that were encompassed in 9 out of 11 of our prioritized research questions. This may suggest that approaches that improve the ability for healthcare providers to deliver information may not be sufficient to meet the needs of patients and caregivers. Rather, partnering to develop a shared understanding—whether about prognosis, medications, hospital, or discharge care plans—is critical. Improved communication practices are not an endpoint for information delivery, but rather a starting point leading to a shared understanding.

Several of the priority areas identified in our study reflect the immensely complex intersections among patients, caregivers, clinicians, and the healthcare delivery system. Addressing these gaps in order to reach the goal of ideal hospital care and an improved patient experience will likely require coordinated approaches and strong involvement and buy-in from multiple stakeholders including the voices of patients and caregivers. Creating patient-centered and stakeholder-driven research has been an increasing priority nationally.³³ Yet to realize this, we must continue to understand the foundations and best practices of authentic stakeholder engagement so that it can be achieved in practice.³⁴ We intend for this prioritized list of questions to galvanize funders, researchers, clinicians, professional societies, and patient and caregiver advocacy groups to work together to address these topics through the creation of new research evidence or the sustainable implementation of existing evidence.

Our findings provide a foundation for stakeholder groups to work in partnership to find research and improvement solutions to the problems identified. Our efforts demonstrate the value and importance of a systematic and broad engagement process to ensure that the voices of patients, caregivers, and other healthcare stakeholders are included in guiding hospital research and quality improvement efforts. This is highlighted by the fact our results of prioritized category areas for research were largely only uncovered following the creation of coding categories during the analysis process and were not captured using a priori catgeories that were expected by the steering committee.

The strengths of this study include our attempts to systematically identify and engage a wide range of perspectives in hospital medicine, including perspectives from patients and their caregivers. There are also acknowledged limitations in our study. While we included patients and PFACs from across the country, the opinions of the people we included may not be representative of all patients. Similarly, the perspectives of the other participants may not have completely represented their stakeholder organizations. While we attempted to include a broad range of organizations, there may be other relevant groups who were not represented in our sample.

In summary, our findings provide direction for the multiple stakeholders involved in improving hospital care. The results will allow the research community to focus on questions that are most important to patients, caregivers, and other stakeholders, reframing them in ways that are more relevant to patients’ lived experiences and that reflect the complexity of the issues. Our findings can also be used by healthcare providers and delivery organizations to target local improvement efforts. We hope that patients and caregivers will use our results to advocate for research and improvement in areas that matter the most to them. We hope that policy makers and funding agencies use our results to promote work in these areas and drive a national conversation about how to most effectively improve hospital care.

The Society of Hospital Medicine (SHM) provided additional administrative, logistical, and technical support.

The authors would like to thank all patients, caregivers, and stakeholders who completed the survey. The authors also would like to acknowledge the organizations and individuals who participated in this study (see Appendix Document 4 for full list). At SHM, the authors would like to specifically thank Claudia Stahl, Jenna Goldstein, Kevin Vuernick, Dr Brad Sharpe, and Dr Larry Wellikson for their support.

The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Department of Veterans Affairs, Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

Thirty-six million people are hospitalized annually in the United States,¹ and a significant proportion of these patients are rehospitalized within 30 days.² Gaps in hospital care are many and well documented, including high rates of adverse events, hospital-acquired conditions, and suboptimal care transitions.^3-5 Despite significant efforts to improve the care of hospitalized patients and some incremental improvement in the safety of hospital care, hospital care remains suboptimal.^6-9 Importantly, hospitalization remains a challenging and vulnerable time for patients and caregivers.

Despite research efforts to improve hospital care, there remains very little data regarding what patients, caregivers, and other stakeholders believe are the most important priorities for improving hospital care, experiences, and outcomes. Small studies described in brief reports provide limited insights into what aspects of hospital care are most important to patients and to their families.^10-13 These small studies suggest that communication and the comfort of caregivers and of patient family members are important priorities, as are the provision of adequate sleeping arrangements, food choices, and psychosocial support. However, the limited nature of these studies precludes the possibility of larger conclusions regarding patient priorities.^10-13

The evolution of patient-centered care has led to increasing efforts to engage, and partner, with patients, caregivers, and other stakeholders to obtain their input on healthcare, research, and improvement efforts.¹⁴ The guiding principle of this engagement is that patients and their caregivers are uniquely positioned to share their lived experiences of care and that their involvement ensures their voices are represented.^15-17 Therefore to obtain greater insight into priority areas from the perspectives of patients, caregivers, and other healthcare stakeholders, we undertook a systematic engagement process to create a patient-partnered and stakeholder-­partnered research agenda for improving the care of hospitalized adult patients.

Guiding Frameworks for Study Methods

We used two established, validated methods to guide our collaborative, inclusive, and consultative approach to patient and stakeholder engagement and research prioritization:

• The Patient-Centered Outcomes Research Institute (PCORI) standards for formulating patient-centered research questions,¹⁸ which includes methods for stakeholder engagement that ensures the representativeness of engaged groups and dissemination of study results.¹⁸
• The James Lind Alliance (JLA) approach to “priority setting partnerships,” through which patients, caregivers, and clinicians partner to identify and prioritize unanswered questions.¹⁹

The Improving Hospital Outcomes through Patient Engagement (i-HOPE) study included eight stepwise phases to formulate and prioritize a set of patient-centered research questions to improve the care and experiences of hospitalized patients and their families.²⁰ Our process is described below and summarized in Table 1.

Phases of Question Development

Phase 1: Steering Committee Formation

Nine clinical researchers, nine patients and/or caregivers, and two administrators from eight academic and community hospitals from across the United States formed a steering committee to participate in teleconferences every other week to manage all stages of the project including design, implementation, and dissemination. At the time of the project conceptualization, the researchers were a subgroup of the Society of Hospital Medicine Research Committee.²¹ Patient partners on the steering committee were identified from local patient and family advisory councils (PFACs) of the researchers’ institutions. Patients partners had previously participated in research or improvement initiatives with their hospitalist partners. Patient partners received stipends throughout the project in recognition of their participation and expertise. Included in the committee was a representative from the Society of Hospital Medicine (SHM)—our supporting and dissemination partner.

Phase 2: Stakeholder Identification

We created a list of potential stakeholder organizations to participate in the study based on the following:

• Organizations with which SHM has worked on initiatives related to the care of hospitalized adult patients
• Organizations with which steering committee members had worked
• Internet searches of organizations participating in similar PCORI-funded projects and of other professional societies that represented patients or providers who work in hospital or post-acute care settings
• Suggestions from stakeholders identified through the first two approaches as described above

We intended to have a broad representation of stakeholders to ensure diverse perspectives were included in the study. Stakeholder organizations included patient advocacy groups, providers, researchers, payers, policy makers and funding agencies.

Phase 3: Stakeholder Engagement and Awareness Training

Representatives from 39 stakeholder organizations who agreed to participate in the study were further orientated to the study rationale and methods via a series of interactive online webinars. This included reminding organziations that everyone’s input and perspective were valued and that we had a flat organization structure that ensured all stakeholders were equal.

Phase 4: Survey Development and Administration

We chose a survey approach to solicit input on identifying gaps in patient care and to generate research questions. The steering committee developed an online survey collaboratively with stakeholder organization representatives. We used survey pretesting with patient and researcher members from the steering committee. The goal of pretesting was to ensure accessibility and comprehension for all potential respondents, particularly patients and caregivers. The final survey asked respondents to record up to three questions that they thought would improve the care of hospitalized adult patients and their families. The specific wording of the survey is shown in the Figure and the entire survey in Appendix Document 1.

We chose three questions because that is the number of entries per participant that is recommended by JLA; it also minimizes responder burden.¹⁹ We asked respondents to identify the stakeholder group they represented (eg, patient, caregiver, healthcare provider, researcher) and for providers to identify where they primarily worked (eg, acute care hospital, post-acute care, advocacy group).

Survey Administration. We administered the survey electronically using Research Electronic Data Capture (REDCap), a secure web-based application used for collecting research data.²² Stakeholders were asked to disseminate the survey broadly using whatever methods that they felt was appropriate to their leadership or members.

Phase 5: Initial Question Categorization Using Qualitative Content Analysis

Six members of the steering committee independently performed qualitative content analysis to categorize all submitted questions.^23,24 This analytic approach identifies, analyzes, and reports patterns within the data.^23,24 We hypothesized that some of the submitted questions would relate to already-­known problems with hospitalization. Therefore the steering committee developed an a priori codebook of 48 categories using common systems-based issues and diseases related to the care of hospitalized patients based on the hospitalist core competency topics developed by hospitalists and the SHM Education Committee,²⁵ personal and clinical knowledge and experience related to the care of hospitalized adult patients, and published literature on the topic. These a priori categories and their definitions are shown in Appendix Document 2 and were the basis for our initial theory-driven (deductive) approach to data analysis.²³

Once coding began, we identified 32 new and additional categories based on our review of the submitted questions, and these were the basis of our data-driven (inductive) approach to analysis.²³ All proposed new codes and definitions were discussed with and approved by the entire steering committee prior to being added to the codebook (Appendix Document 2).

While coding categories were mutually exclusive, multiple codes could be attributed to a question depending on the content and meaning of a question. To ensure methodological rigor, reviewers met regularly via teleconference or communicated via email throughout the analysis to iteratively refine and define coding categories. All questions were reviewed independently, and then discussed, by at least two members of the analysis team. Any coding disparities were discussed and resolved by negotiated consensus.²⁶ Analysis was conducted using Dedoose V8.0.35 (Sociocultural Research Consultants, Los Angeles, California).

Phase 6: Initial Question Identification Using Quantitative Content Analysis

Following thematic categorization, all steering committee members then reviewed each category to identify and quantify the most commonly submitted questions.²⁷ A question was determined to be a commonly submitted question when it appeared at least 10 times.

Phase 7: Interim Priority Setting

We sent the list of the most commonly submitted questions (Appendix Document 3) to stakeholder organizations and patient partner networks for review and evaluation. Each organization was asked to engage with their constituents and leaders to collectively decide on which of these questions resonated and was most important. These preferences would then be used during the in-person meeting (Phase 8). We did not provide stakeholder organizations with information about how many times each question was submitted by respondents because we felt this could potentially bias their decision-making processes such that true importance and relevance would not obtained.

Phase 8: In-person Meeting for Final Question Prioritization and Refinement

Representatives from all 39 participating stakeholder organizations were invited to participate in a 2-day, in-person meeting to create a final prioritized list of questions to be used to guide patient-centered research seeking to improve the care of hospitalized adult patients and their caregivers. This meeting was attended by 43 stakeholders (26 stakeholder organization representatives and 17 steering committee members) from 37 unique stakeholder organizations. To facilitate the inclusiveness and to ensure a consensus-driven process, we used nominal group technique (NGT) to allow all of the meeting participants to discuss the list of prioritized questions in small groups.²⁸ NGT allows participants to comprehend each other’s point of view to ensure no perpsectives are excluded.²⁸ The NGT was followed by two rounds of individual voting. Stakeholders were then asked to frame their discussions and their votes based on the perspectives of their organizations or PFACs that they represent. The voting process required participants to make choices regarding the relative importance of all of the questions, which therefore makes the resulting list a true prioritized list. In the first round of voting, participants voted for up to five questions for inclusion on the prioritized list. Based on the distribution of votes, where one vote equals one point, each of the 36 questions was then ranked in order of the assigned points. The rank-ordering process resulted in a natural cut point or delineated point, resulting in the 11 questions considered to be the highest prioritized questions. Following this, a second round of voting took place with the same parameters as the first round and allowed us to rank order questions by order of importance and priority. Finally, during small and large group discussions, the original text of each question was edited, refined, and reformatted into questions that could drive a research agenda.

Ethical Oversight

This study was reviewed by the Institutional Review Board of the University of Texas Health Science Center at San Antonio and deemed not to be human subject research (UT Health San Antonio IRB Protocol Number: HSC20170058N).

In total, 499 respondents from 39 unique stakeholder organizations responded to our survey. Respondents self-identified into multiple categorizes resulting in 267 healthcare providers, 244 patients and caregivers, and 63 researchers. Characteristics of respondents to the survey are shown in Table 2.

An overview of study results is shown in Table 1. Respondents submitted a total of 782 questions related to improving the care of hospitalized patients. These questions were categorized during thematic analysis into 70 distinct categories—52 that were health system related and 18 that were disease specific (Appendix 2). The most frequently used health system–related categories were related to discharge care transitions, medications, patient understanding, and patient-family-care team communication (Appendix 2).

From these categories, 36 questions met our criteria for “commonly identified,” ie, submitted at least 10 times (Appendix Document 3). Notably, these 36 questions were derived from 67 different coding categories, of which 24 (36%) were a priori (theory-driven) categories²³ created by the Steering Committee before analysis began and 43 (64%) categories were created as a result of this study’s stakeholder-engaged process and a data-driven approach²³ to analysis (Appendix Document 3). These groups of questions were then presented during the 2-day, in-person meeting and reduced to a final 11 questions that were identified in rank order as top priorities (Table 3). The questions considered highest priority related to ensuring shared treatment and goals of care decision making, improving hospital discharge handoff to other care facilities and providers, and reducing the confusion related to education on medications, conditions, hospital care, and discharge.

Using a dynamic and collaborative stakeholder engagement process, we identified 11 questions prioritized in order of importance by patients, caregivers, and other healthcare stakeholders to improve the care of hospitalized adult patients. While some of the topics identified are already well-known topics in need of research and improvement, our findings frame these topics according to the perspectives of patients, caregivers, and stakeholders. This unique perspective adds a level of richness and nuance that provides insight into how to better address these topics and ultimately inform research and quality improvement efforts.

The question considered to be the highest priority area for future research and improvement surmised how it may be possible to implement interventions that engage patients in shared decision making. Shared decision making involves patients and their care team working together to make decisions about treatment, and other aspects of care based on sound clinical evidence that balances the risks and outcomes with patient preferences and values. Although considered critically important,²⁹ a recent evaluation of shared decision making practices in over 250 inpatient encounters identified significant gaps in physicians’ abilities to perform key elements of a shared decision making approach and reinforced the need to identify what strategies can best promote widespread shared decision making.³⁰ While there has been considerable effort to faciliate shared decision making in practice, there remains mixed evidence regarding the sustainability and impact of tools seeking to support shared decision making, such as decision aids, question prompt lists, and coaches.³¹ This suggests that new approaches to shared decision making may be required and likely explains why this question was rated as a top priority by stakeholders in the current study.

Respondents frequently framed their questions in terms of their lived experiences, providing stories and scenarios to illustrate the importance of the questions they submitted. This personal framing highlighted to us the need to think about improving care delivery from the end-user perspective. For example, respondents framed questions about care transitions not with regard to early appointments, instructions, or medication lists, but rather in terms of whom to call with questions or how best to reach their physician, nurse, or other identified provider. These perspectives suggest that strategies and approaches to improvement that start with patient and caregiver experiences, such as design thinking,³² may be important to continued efforts to improve hospital care. Additionally, the focus on the interpersonal aspects of care delivery highlights the need to focus on the patient-provider relationship and communication.

Questions submitted by respondents demonstrated a stark difference between “patient education” and “patient understanding,” which suggests that being provided with education or education materials regarding care did not necessarily lead to a clear patient understanding. The potential for lack of understanding was particularly prominent in the context of care plan development and during times of care transition—topics that were encompassed in 9 out of 11 of our prioritized research questions. This may suggest that approaches that improve the ability for healthcare providers to deliver information may not be sufficient to meet the needs of patients and caregivers. Rather, partnering to develop a shared understanding—whether about prognosis, medications, hospital, or discharge care plans—is critical. Improved communication practices are not an endpoint for information delivery, but rather a starting point leading to a shared understanding.

Several of the priority areas identified in our study reflect the immensely complex intersections among patients, caregivers, clinicians, and the healthcare delivery system. Addressing these gaps in order to reach the goal of ideal hospital care and an improved patient experience will likely require coordinated approaches and strong involvement and buy-in from multiple stakeholders including the voices of patients and caregivers. Creating patient-centered and stakeholder-driven research has been an increasing priority nationally.³³ Yet to realize this, we must continue to understand the foundations and best practices of authentic stakeholder engagement so that it can be achieved in practice.³⁴ We intend for this prioritized list of questions to galvanize funders, researchers, clinicians, professional societies, and patient and caregiver advocacy groups to work together to address these topics through the creation of new research evidence or the sustainable implementation of existing evidence.

Our findings provide a foundation for stakeholder groups to work in partnership to find research and improvement solutions to the problems identified. Our efforts demonstrate the value and importance of a systematic and broad engagement process to ensure that the voices of patients, caregivers, and other healthcare stakeholders are included in guiding hospital research and quality improvement efforts. This is highlighted by the fact our results of prioritized category areas for research were largely only uncovered following the creation of coding categories during the analysis process and were not captured using a priori catgeories that were expected by the steering committee.

The strengths of this study include our attempts to systematically identify and engage a wide range of perspectives in hospital medicine, including perspectives from patients and their caregivers. There are also acknowledged limitations in our study. While we included patients and PFACs from across the country, the opinions of the people we included may not be representative of all patients. Similarly, the perspectives of the other participants may not have completely represented their stakeholder organizations. While we attempted to include a broad range of organizations, there may be other relevant groups who were not represented in our sample.

In summary, our findings provide direction for the multiple stakeholders involved in improving hospital care. The results will allow the research community to focus on questions that are most important to patients, caregivers, and other stakeholders, reframing them in ways that are more relevant to patients’ lived experiences and that reflect the complexity of the issues. Our findings can also be used by healthcare providers and delivery organizations to target local improvement efforts. We hope that patients and caregivers will use our results to advocate for research and improvement in areas that matter the most to them. We hope that policy makers and funding agencies use our results to promote work in these areas and drive a national conversation about how to most effectively improve hospital care.

The Society of Hospital Medicine (SHM) provided additional administrative, logistical, and technical support.

The authors would like to thank all patients, caregivers, and stakeholders who completed the survey. The authors also would like to acknowledge the organizations and individuals who participated in this study (see Appendix Document 4 for full list). At SHM, the authors would like to specifically thank Claudia Stahl, Jenna Goldstein, Kevin Vuernick, Dr Brad Sharpe, and Dr Larry Wellikson for their support.

The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Department of Veterans Affairs, Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

Thirty-six million people are hospitalized annually in the United States,¹ and a significant proportion of these patients are rehospitalized within 30 days.² Gaps in hospital care are many and well documented, including high rates of adverse events, hospital-acquired conditions, and suboptimal care transitions.^3-5 Despite significant efforts to improve the care of hospitalized patients and some incremental improvement in the safety of hospital care, hospital care remains suboptimal.^6-9 Importantly, hospitalization remains a challenging and vulnerable time for patients and caregivers.

Despite research efforts to improve hospital care, there remains very little data regarding what patients, caregivers, and other stakeholders believe are the most important priorities for improving hospital care, experiences, and outcomes. Small studies described in brief reports provide limited insights into what aspects of hospital care are most important to patients and to their families.^10-13 These small studies suggest that communication and the comfort of caregivers and of patient family members are important priorities, as are the provision of adequate sleeping arrangements, food choices, and psychosocial support. However, the limited nature of these studies precludes the possibility of larger conclusions regarding patient priorities.^10-13

The evolution of patient-centered care has led to increasing efforts to engage, and partner, with patients, caregivers, and other stakeholders to obtain their input on healthcare, research, and improvement efforts.¹⁴ The guiding principle of this engagement is that patients and their caregivers are uniquely positioned to share their lived experiences of care and that their involvement ensures their voices are represented.^15-17 Therefore to obtain greater insight into priority areas from the perspectives of patients, caregivers, and other healthcare stakeholders, we undertook a systematic engagement process to create a patient-partnered and stakeholder-­partnered research agenda for improving the care of hospitalized adult patients.

Guiding Frameworks for Study Methods

We used two established, validated methods to guide our collaborative, inclusive, and consultative approach to patient and stakeholder engagement and research prioritization:

• The Patient-Centered Outcomes Research Institute (PCORI) standards for formulating patient-centered research questions,¹⁸ which includes methods for stakeholder engagement that ensures the representativeness of engaged groups and dissemination of study results.¹⁸
• The James Lind Alliance (JLA) approach to “priority setting partnerships,” through which patients, caregivers, and clinicians partner to identify and prioritize unanswered questions.¹⁹

The Improving Hospital Outcomes through Patient Engagement (i-HOPE) study included eight stepwise phases to formulate and prioritize a set of patient-centered research questions to improve the care and experiences of hospitalized patients and their families.²⁰ Our process is described below and summarized in Table 1.

Phases of Question Development

Phase 1: Steering Committee Formation

Nine clinical researchers, nine patients and/or caregivers, and two administrators from eight academic and community hospitals from across the United States formed a steering committee to participate in teleconferences every other week to manage all stages of the project including design, implementation, and dissemination. At the time of the project conceptualization, the researchers were a subgroup of the Society of Hospital Medicine Research Committee.²¹ Patient partners on the steering committee were identified from local patient and family advisory councils (PFACs) of the researchers’ institutions. Patients partners had previously participated in research or improvement initiatives with their hospitalist partners. Patient partners received stipends throughout the project in recognition of their participation and expertise. Included in the committee was a representative from the Society of Hospital Medicine (SHM)—our supporting and dissemination partner.

Phase 2: Stakeholder Identification

We created a list of potential stakeholder organizations to participate in the study based on the following:

• Organizations with which SHM has worked on initiatives related to the care of hospitalized adult patients
• Organizations with which steering committee members had worked
• Internet searches of organizations participating in similar PCORI-funded projects and of other professional societies that represented patients or providers who work in hospital or post-acute care settings
• Suggestions from stakeholders identified through the first two approaches as described above

We intended to have a broad representation of stakeholders to ensure diverse perspectives were included in the study. Stakeholder organizations included patient advocacy groups, providers, researchers, payers, policy makers and funding agencies.

Phase 3: Stakeholder Engagement and Awareness Training

Representatives from 39 stakeholder organizations who agreed to participate in the study were further orientated to the study rationale and methods via a series of interactive online webinars. This included reminding organziations that everyone’s input and perspective were valued and that we had a flat organization structure that ensured all stakeholders were equal.

Phase 4: Survey Development and Administration

We chose a survey approach to solicit input on identifying gaps in patient care and to generate research questions. The steering committee developed an online survey collaboratively with stakeholder organization representatives. We used survey pretesting with patient and researcher members from the steering committee. The goal of pretesting was to ensure accessibility and comprehension for all potential respondents, particularly patients and caregivers. The final survey asked respondents to record up to three questions that they thought would improve the care of hospitalized adult patients and their families. The specific wording of the survey is shown in the Figure and the entire survey in Appendix Document 1.

We chose three questions because that is the number of entries per participant that is recommended by JLA; it also minimizes responder burden.¹⁹ We asked respondents to identify the stakeholder group they represented (eg, patient, caregiver, healthcare provider, researcher) and for providers to identify where they primarily worked (eg, acute care hospital, post-acute care, advocacy group).

Survey Administration. We administered the survey electronically using Research Electronic Data Capture (REDCap), a secure web-based application used for collecting research data.²² Stakeholders were asked to disseminate the survey broadly using whatever methods that they felt was appropriate to their leadership or members.

Phase 5: Initial Question Categorization Using Qualitative Content Analysis

Six members of the steering committee independently performed qualitative content analysis to categorize all submitted questions.^23,24 This analytic approach identifies, analyzes, and reports patterns within the data.^23,24 We hypothesized that some of the submitted questions would relate to already-­known problems with hospitalization. Therefore the steering committee developed an a priori codebook of 48 categories using common systems-based issues and diseases related to the care of hospitalized patients based on the hospitalist core competency topics developed by hospitalists and the SHM Education Committee,²⁵ personal and clinical knowledge and experience related to the care of hospitalized adult patients, and published literature on the topic. These a priori categories and their definitions are shown in Appendix Document 2 and were the basis for our initial theory-driven (deductive) approach to data analysis.²³

Once coding began, we identified 32 new and additional categories based on our review of the submitted questions, and these were the basis of our data-driven (inductive) approach to analysis.²³ All proposed new codes and definitions were discussed with and approved by the entire steering committee prior to being added to the codebook (Appendix Document 2).

While coding categories were mutually exclusive, multiple codes could be attributed to a question depending on the content and meaning of a question. To ensure methodological rigor, reviewers met regularly via teleconference or communicated via email throughout the analysis to iteratively refine and define coding categories. All questions were reviewed independently, and then discussed, by at least two members of the analysis team. Any coding disparities were discussed and resolved by negotiated consensus.²⁶ Analysis was conducted using Dedoose V8.0.35 (Sociocultural Research Consultants, Los Angeles, California).

Phase 6: Initial Question Identification Using Quantitative Content Analysis

Following thematic categorization, all steering committee members then reviewed each category to identify and quantify the most commonly submitted questions.²⁷ A question was determined to be a commonly submitted question when it appeared at least 10 times.

Phase 7: Interim Priority Setting

We sent the list of the most commonly submitted questions (Appendix Document 3) to stakeholder organizations and patient partner networks for review and evaluation. Each organization was asked to engage with their constituents and leaders to collectively decide on which of these questions resonated and was most important. These preferences would then be used during the in-person meeting (Phase 8). We did not provide stakeholder organizations with information about how many times each question was submitted by respondents because we felt this could potentially bias their decision-making processes such that true importance and relevance would not obtained.

Phase 8: In-person Meeting for Final Question Prioritization and Refinement

Representatives from all 39 participating stakeholder organizations were invited to participate in a 2-day, in-person meeting to create a final prioritized list of questions to be used to guide patient-centered research seeking to improve the care of hospitalized adult patients and their caregivers. This meeting was attended by 43 stakeholders (26 stakeholder organization representatives and 17 steering committee members) from 37 unique stakeholder organizations. To facilitate the inclusiveness and to ensure a consensus-driven process, we used nominal group technique (NGT) to allow all of the meeting participants to discuss the list of prioritized questions in small groups.²⁸ NGT allows participants to comprehend each other’s point of view to ensure no perpsectives are excluded.²⁸ The NGT was followed by two rounds of individual voting. Stakeholders were then asked to frame their discussions and their votes based on the perspectives of their organizations or PFACs that they represent. The voting process required participants to make choices regarding the relative importance of all of the questions, which therefore makes the resulting list a true prioritized list. In the first round of voting, participants voted for up to five questions for inclusion on the prioritized list. Based on the distribution of votes, where one vote equals one point, each of the 36 questions was then ranked in order of the assigned points. The rank-ordering process resulted in a natural cut point or delineated point, resulting in the 11 questions considered to be the highest prioritized questions. Following this, a second round of voting took place with the same parameters as the first round and allowed us to rank order questions by order of importance and priority. Finally, during small and large group discussions, the original text of each question was edited, refined, and reformatted into questions that could drive a research agenda.

Ethical Oversight

This study was reviewed by the Institutional Review Board of the University of Texas Health Science Center at San Antonio and deemed not to be human subject research (UT Health San Antonio IRB Protocol Number: HSC20170058N).

In total, 499 respondents from 39 unique stakeholder organizations responded to our survey. Respondents self-identified into multiple categorizes resulting in 267 healthcare providers, 244 patients and caregivers, and 63 researchers. Characteristics of respondents to the survey are shown in Table 2.

An overview of study results is shown in Table 1. Respondents submitted a total of 782 questions related to improving the care of hospitalized patients. These questions were categorized during thematic analysis into 70 distinct categories—52 that were health system related and 18 that were disease specific (Appendix 2). The most frequently used health system–related categories were related to discharge care transitions, medications, patient understanding, and patient-family-care team communication (Appendix 2).

From these categories, 36 questions met our criteria for “commonly identified,” ie, submitted at least 10 times (Appendix Document 3). Notably, these 36 questions were derived from 67 different coding categories, of which 24 (36%) were a priori (theory-driven) categories²³ created by the Steering Committee before analysis began and 43 (64%) categories were created as a result of this study’s stakeholder-engaged process and a data-driven approach²³ to analysis (Appendix Document 3). These groups of questions were then presented during the 2-day, in-person meeting and reduced to a final 11 questions that were identified in rank order as top priorities (Table 3). The questions considered highest priority related to ensuring shared treatment and goals of care decision making, improving hospital discharge handoff to other care facilities and providers, and reducing the confusion related to education on medications, conditions, hospital care, and discharge.

Using a dynamic and collaborative stakeholder engagement process, we identified 11 questions prioritized in order of importance by patients, caregivers, and other healthcare stakeholders to improve the care of hospitalized adult patients. While some of the topics identified are already well-known topics in need of research and improvement, our findings frame these topics according to the perspectives of patients, caregivers, and stakeholders. This unique perspective adds a level of richness and nuance that provides insight into how to better address these topics and ultimately inform research and quality improvement efforts.

The question considered to be the highest priority area for future research and improvement surmised how it may be possible to implement interventions that engage patients in shared decision making. Shared decision making involves patients and their care team working together to make decisions about treatment, and other aspects of care based on sound clinical evidence that balances the risks and outcomes with patient preferences and values. Although considered critically important,²⁹ a recent evaluation of shared decision making practices in over 250 inpatient encounters identified significant gaps in physicians’ abilities to perform key elements of a shared decision making approach and reinforced the need to identify what strategies can best promote widespread shared decision making.³⁰ While there has been considerable effort to faciliate shared decision making in practice, there remains mixed evidence regarding the sustainability and impact of tools seeking to support shared decision making, such as decision aids, question prompt lists, and coaches.³¹ This suggests that new approaches to shared decision making may be required and likely explains why this question was rated as a top priority by stakeholders in the current study.

Respondents frequently framed their questions in terms of their lived experiences, providing stories and scenarios to illustrate the importance of the questions they submitted. This personal framing highlighted to us the need to think about improving care delivery from the end-user perspective. For example, respondents framed questions about care transitions not with regard to early appointments, instructions, or medication lists, but rather in terms of whom to call with questions or how best to reach their physician, nurse, or other identified provider. These perspectives suggest that strategies and approaches to improvement that start with patient and caregiver experiences, such as design thinking,³² may be important to continued efforts to improve hospital care. Additionally, the focus on the interpersonal aspects of care delivery highlights the need to focus on the patient-provider relationship and communication.

Questions submitted by respondents demonstrated a stark difference between “patient education” and “patient understanding,” which suggests that being provided with education or education materials regarding care did not necessarily lead to a clear patient understanding. The potential for lack of understanding was particularly prominent in the context of care plan development and during times of care transition—topics that were encompassed in 9 out of 11 of our prioritized research questions. This may suggest that approaches that improve the ability for healthcare providers to deliver information may not be sufficient to meet the needs of patients and caregivers. Rather, partnering to develop a shared understanding—whether about prognosis, medications, hospital, or discharge care plans—is critical. Improved communication practices are not an endpoint for information delivery, but rather a starting point leading to a shared understanding.

Several of the priority areas identified in our study reflect the immensely complex intersections among patients, caregivers, clinicians, and the healthcare delivery system. Addressing these gaps in order to reach the goal of ideal hospital care and an improved patient experience will likely require coordinated approaches and strong involvement and buy-in from multiple stakeholders including the voices of patients and caregivers. Creating patient-centered and stakeholder-driven research has been an increasing priority nationally.³³ Yet to realize this, we must continue to understand the foundations and best practices of authentic stakeholder engagement so that it can be achieved in practice.³⁴ We intend for this prioritized list of questions to galvanize funders, researchers, clinicians, professional societies, and patient and caregiver advocacy groups to work together to address these topics through the creation of new research evidence or the sustainable implementation of existing evidence.

Our findings provide a foundation for stakeholder groups to work in partnership to find research and improvement solutions to the problems identified. Our efforts demonstrate the value and importance of a systematic and broad engagement process to ensure that the voices of patients, caregivers, and other healthcare stakeholders are included in guiding hospital research and quality improvement efforts. This is highlighted by the fact our results of prioritized category areas for research were largely only uncovered following the creation of coding categories during the analysis process and were not captured using a priori catgeories that were expected by the steering committee.

The strengths of this study include our attempts to systematically identify and engage a wide range of perspectives in hospital medicine, including perspectives from patients and their caregivers. There are also acknowledged limitations in our study. While we included patients and PFACs from across the country, the opinions of the people we included may not be representative of all patients. Similarly, the perspectives of the other participants may not have completely represented their stakeholder organizations. While we attempted to include a broad range of organizations, there may be other relevant groups who were not represented in our sample.

In summary, our findings provide direction for the multiple stakeholders involved in improving hospital care. The results will allow the research community to focus on questions that are most important to patients, caregivers, and other stakeholders, reframing them in ways that are more relevant to patients’ lived experiences and that reflect the complexity of the issues. Our findings can also be used by healthcare providers and delivery organizations to target local improvement efforts. We hope that patients and caregivers will use our results to advocate for research and improvement in areas that matter the most to them. We hope that policy makers and funding agencies use our results to promote work in these areas and drive a national conversation about how to most effectively improve hospital care.

The Society of Hospital Medicine (SHM) provided additional administrative, logistical, and technical support.

The authors would like to thank all patients, caregivers, and stakeholders who completed the survey. The authors also would like to acknowledge the organizations and individuals who participated in this study (see Appendix Document 4 for full list). At SHM, the authors would like to specifically thank Claudia Stahl, Jenna Goldstein, Kevin Vuernick, Dr Brad Sharpe, and Dr Larry Wellikson for their support.

The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of the Department of Veterans Affairs, Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors, or Methodology Committee.

“I need to get out of here! I haven’t gotten any sleep, my medications never come on time, and I feel like a pincushion. I am leaving NOW!” The commotion interrupts your intern’s meticulous presentation as your team quickly files into the room. You find a disheveled, visibly frustrated man tearing at his intravenous line, surrounded by his half-eaten breakfast and multiple urinals filled to various levels. His IV pump is beeping, and telemetry wires hang haphazardly off his chest.

Mr. Smith had been admitted for a heart failure exacerbation. You’d been making steady progress with diuresis but are now faced with a likely discharge against medical advice if you can’t defuse the situation.

As hospitalists, this scenario might feel eerily familiar. Perhaps Mr. Smith had enough of being in the hospital and just wanted to go home to see his dog, or maybe the food was not up to his standards.

However, his next line stops your team dead in its tracks. “I feel like I am in Vietnam all over again. I am tied up with all these wires and feel like a prisoner! Please let me go.” It turns out that Mr. Smith had a comorbidity that was overlooked during his initial intake: posttraumatic stress disorder.

Impact of PTSD

PTSD is a diagnosis characterized by intrusive recurrent thoughts, dreams, or flashbacks that follow exposure to a traumatic event or series of events (see Table 1). While more common among veterans (for example, Vietnam veterans have an estimated lifetime prevalence of PTSD of 30.9% for men and 26.9% for women),¹ a national survey of U.S. households estimated the lifetime prevalence of PTSD among adult Americans to be 6.8%.² PTSD is often underdiagnosed and underreported by patients in the outpatient setting, leading to underrecognition and undertreatment of these patients in the inpatient setting.

Although it may not be surprising that patients with PTSD use more mental health services, they are also more likely to use nonmental health services. In one study, total utilization of outpatient nonmental health services was 91% greater in veterans with PTSD, and these patients were three times more likely to be hospitalized than those without any mental health diagnoses.³ Additionally, they are likely to present later and stay longer when compared with patients without PTSD. One study estimated the cost of PTSD-related hospitalization in the United States from 2002 to 2011 as being $34.9 billion.⁴ Notably, close to 95% of hospitalizations in this study listed PTSD as a secondary rather than primary diagnosis, suggesting that the vast majority of these admitted patients are cared for by frontline providers who are not trained mental health professionals.

How PTSD manifests in the hospital

But, how exactly can the hospital environment contribute to decompensation of PTSD symptoms? Unfortunately, there is little empiric data to guide us. Based on what we do know of PTSD, we offer the following hypotheses.

Patients with PTSD may feel a loss of control or helplessness when admitted to the inpatient setting. For example, they cannot control when they receive their medications or when they get their meals. The act of showering or going outside requires approval. In addition, they might perceive they are being “ordered around” by staff and may be carted off to a study without knowing why the study is being done in the first place.

Triggers in the hospital environment may contribute to PTSD flares. Think about the loud, beeping IV pump that constantly goes off at random intervals, disrupting sleep. What about a blood draw in the early morning where the phlebotomist sticks a needle into the arm of a sleeping patient? Or the well-intentioned provider doing prerounds who wakes a sleeping patient with a shake of the shoulder or some other form of physical touch? The multidisciplinary team crowding around their hospital bed? For a patient suffering from PTSD, any of these could easily set off a cascade of escalating symptoms.

Knowing that these triggers exist, can anything be done to ameliorate their effects? We propose some practical suggestions for improving the hospital experience for patients with PTSD.

Strategies to combat PTSD in the inpatient setting

Perhaps the most practical place to start is with preserving sleep in hospitalized patients with PTSD. The majority of patients with PTSD have sleep disturbances, and interrupted sleep routines in these patients can exacerbate nightmares and underlying psychiatric issues.⁵ Therefore, we should strive to avoid unnecessary awakenings.

While this principle holds true for all hospitalized patients, it must be especially prioritized in patients with PTSD. Ask yourself these questions during your next admission: Must intravenous fluids run 24 hours a day, or could they be stopped at 6 p.m.? Are vital signs needed overnight? Could the last dose of furosemide occur at 4 p.m. to avoid nocturia?

Another strategy involves bedtime routines. Many of these patients may already follow a home sleep routine as part of their chronic PTSD management. To honor these habits in the hospital might mean that staff encourage turning the lights and the television off at a designated time. Additionally, the literature suggests music therapy can have a significant impact on enhanced sleep quality. When available, music therapy may reduce insomnia and decrease the amount of time prior to falling asleep.⁶

Other methods to counteract PTSD fall under the general principle of “trauma-informed care.” Trauma-informed care comprises practices promoting a culture of safety, empowerment, and healing.⁷ It is a mindful and sensitive approach that acknowledges the pervasive nature of trauma exposure, the reality of ongoing adverse effects in trauma survivors, and the fact that recovery is highly personal and complex.⁸

By definition, patients with PTSD have endured some traumatic event. Therefore, ideal care teams will ask patients about things that may trigger their anxiety and then work to mitigate them. For example, some patients with PTSD have a severe startle response when woken up by someone touching them. When patients feel that they can share their concerns with their care team and their team honors that observation by waking them in a different way, trust and control may be gained. This process of asking for patient guidance and adjusting accordingly is consistent with a trauma-informed care approach.⁹ A true trauma-informed care approach involves the entire practice environment but examining and adjusting our own behavior and assumptions are good places to start.

Summary of recommended treatments

Psychotherapy is preferable over pharmacotherapy, but both can be combined as needed. Individual trauma-focused psychotherapies utilizing a primary component of exposure and/or cognitive restructuring have strong evidence for effectiveness but are primarily outpatient based.

For pharmacologic treatment, selective serotonin reuptake inhibitors (for example, sertraline, paroxetine, or fluoxetine) and serotonin norepinephrine reuptake inhibitors (for example, venlafaxine) monotherapy have strong evidence for effectiveness and can be started while inpatient. However, these medications typically take weeks to produce benefits. Recent trials studying prazosin, an alpha1-adrenergic receptor antagonist used to alleviate nightmares associated with PTSD, have demonstrated inefficacy or even harm,leading experts to caution against its use.^10,11 Finally, benzodiazepine and atypical antipsychotic usage should be restricted and used as a last resort.¹²

In summary, PTSD is common among veterans and nonveterans. While hospitalists may rarely admit patients because of their PTSD, they will often take care of patients who have PTSD as a comorbidity. Therefore, understanding the basics of PTSD and how hospitalization may exacerbate its symptoms can meaningfully improve care for these patients.

Dr. Fletcher is a hospitalist at the Milwaukee Veterans Affairs Medical Center and Froedtert Hospital in Wauwatosa, Wis. She is professor of internal medicine and program director for the internal medicine residency program at the Medical College of Wisconsin, Milwaukee. She is also faculty mentor for the VA’s Chief Resident for Quality and Safety. Dr. Kwan is a hospitalist at the VA San Diego Healthcare System and is associate professor at the University of California, San Diego, in the division of hospital medicine. He serves as an associate clerkship director of both the internal medicine clerkship and the medicine subinternship. He is the chair of SHM’s Physicians in Training committee. Dr. Steinbach is chief of hospital medicine at the Atlanta VA Medical Center and assistant professor of medicine in the division of hospital medicine at Emory University, Atlanta.

References

1. Kang HK et al. Posttraumatic stress disorder and chronic fatigue syndrome–like illness among Gulf War veterans: A population-based survey of 30,000 veterans. Am J Epidemiol. 2003;157(2):141-8.

2. Kessler RC et al. Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005; 62(6):593-602.

3. Cohen BE et al. Mental health diagnoses and utilization of VA nonmental health medical services among returning Iraq and Afghanistan veterans. J Gen Intern Med. 2010;25(1):18-24.

4. Haviland MG et al. Posttraumatic stress disorder–related hospitalizations in the United States (2002-2011): Rates, co-occurring illnesses, suicidal ideation/self-harm, and hospital charges. J Nerv Ment Dis. 2016; 204(2):78-86.

5. Aurora RN et al. Best practice guide for the treatment of nightmare disorder in adults. J Clin Sleep Med. 2010;6(4):389-401.

6. Blanaru M et al. The effects of music relaxation and muscle relaxation techniques on sleep quality and emotional measures among individuals with posttraumatic stress disorder. Ment Illn. 2012;4(2):e13.

7. Tello M. (2018, Oct 16). Trauma-informed care: What it is, and why it’s important. Retrieved March 18, 2019, from https://www.health.harvard.edu/blog/trauma-informed-care-what-it-is-and-why-its-important-2018101613562.

8. Harris M et al. Using trauma theory to design service systems. San Francisco: 2001.

9. Substance abuse and mental health services administration. SAMHSA’s concept of trauma and guidance for a trauma-informed approach. HHS publication no. SMA 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2014.

10. Raskind MA et al. Trial of prazosin for posttraumatic stress disorder in military veterans. N Engl J Med. 2018 Feb 8;378(6):507-7.

11. McCall WV et al. A pilot, randomized clinical trial of bedtime doses of prazosin versus placebo in suicidal posttraumatic stress disorder patients with nightmares. J Clin Psychopharmacol. 2018 Dec;38(6):618-21.

12. U.S. Department of Veterans Affairs/U.S. Department of Defense. Clinical practice guideline for the management of posttraumatic stress disorder and acute stress reaction 2017. Accessed February 18, 2019.

“I need to get out of here! I haven’t gotten any sleep, my medications never come on time, and I feel like a pincushion. I am leaving NOW!” The commotion interrupts your intern’s meticulous presentation as your team quickly files into the room. You find a disheveled, visibly frustrated man tearing at his intravenous line, surrounded by his half-eaten breakfast and multiple urinals filled to various levels. His IV pump is beeping, and telemetry wires hang haphazardly off his chest.

Mr. Smith had been admitted for a heart failure exacerbation. You’d been making steady progress with diuresis but are now faced with a likely discharge against medical advice if you can’t defuse the situation.

As hospitalists, this scenario might feel eerily familiar. Perhaps Mr. Smith had enough of being in the hospital and just wanted to go home to see his dog, or maybe the food was not up to his standards.

However, his next line stops your team dead in its tracks. “I feel like I am in Vietnam all over again. I am tied up with all these wires and feel like a prisoner! Please let me go.” It turns out that Mr. Smith had a comorbidity that was overlooked during his initial intake: posttraumatic stress disorder.

Impact of PTSD

PTSD is a diagnosis characterized by intrusive recurrent thoughts, dreams, or flashbacks that follow exposure to a traumatic event or series of events (see Table 1). While more common among veterans (for example, Vietnam veterans have an estimated lifetime prevalence of PTSD of 30.9% for men and 26.9% for women),¹ a national survey of U.S. households estimated the lifetime prevalence of PTSD among adult Americans to be 6.8%.² PTSD is often underdiagnosed and underreported by patients in the outpatient setting, leading to underrecognition and undertreatment of these patients in the inpatient setting.

Although it may not be surprising that patients with PTSD use more mental health services, they are also more likely to use nonmental health services. In one study, total utilization of outpatient nonmental health services was 91% greater in veterans with PTSD, and these patients were three times more likely to be hospitalized than those without any mental health diagnoses.³ Additionally, they are likely to present later and stay longer when compared with patients without PTSD. One study estimated the cost of PTSD-related hospitalization in the United States from 2002 to 2011 as being $34.9 billion.⁴ Notably, close to 95% of hospitalizations in this study listed PTSD as a secondary rather than primary diagnosis, suggesting that the vast majority of these admitted patients are cared for by frontline providers who are not trained mental health professionals.

How PTSD manifests in the hospital

But, how exactly can the hospital environment contribute to decompensation of PTSD symptoms? Unfortunately, there is little empiric data to guide us. Based on what we do know of PTSD, we offer the following hypotheses.

Patients with PTSD may feel a loss of control or helplessness when admitted to the inpatient setting. For example, they cannot control when they receive their medications or when they get their meals. The act of showering or going outside requires approval. In addition, they might perceive they are being “ordered around” by staff and may be carted off to a study without knowing why the study is being done in the first place.

Triggers in the hospital environment may contribute to PTSD flares. Think about the loud, beeping IV pump that constantly goes off at random intervals, disrupting sleep. What about a blood draw in the early morning where the phlebotomist sticks a needle into the arm of a sleeping patient? Or the well-intentioned provider doing prerounds who wakes a sleeping patient with a shake of the shoulder or some other form of physical touch? The multidisciplinary team crowding around their hospital bed? For a patient suffering from PTSD, any of these could easily set off a cascade of escalating symptoms.

Knowing that these triggers exist, can anything be done to ameliorate their effects? We propose some practical suggestions for improving the hospital experience for patients with PTSD.

Strategies to combat PTSD in the inpatient setting

Perhaps the most practical place to start is with preserving sleep in hospitalized patients with PTSD. The majority of patients with PTSD have sleep disturbances, and interrupted sleep routines in these patients can exacerbate nightmares and underlying psychiatric issues.⁵ Therefore, we should strive to avoid unnecessary awakenings.

While this principle holds true for all hospitalized patients, it must be especially prioritized in patients with PTSD. Ask yourself these questions during your next admission: Must intravenous fluids run 24 hours a day, or could they be stopped at 6 p.m.? Are vital signs needed overnight? Could the last dose of furosemide occur at 4 p.m. to avoid nocturia?

Another strategy involves bedtime routines. Many of these patients may already follow a home sleep routine as part of their chronic PTSD management. To honor these habits in the hospital might mean that staff encourage turning the lights and the television off at a designated time. Additionally, the literature suggests music therapy can have a significant impact on enhanced sleep quality. When available, music therapy may reduce insomnia and decrease the amount of time prior to falling asleep.⁶

Other methods to counteract PTSD fall under the general principle of “trauma-informed care.” Trauma-informed care comprises practices promoting a culture of safety, empowerment, and healing.⁷ It is a mindful and sensitive approach that acknowledges the pervasive nature of trauma exposure, the reality of ongoing adverse effects in trauma survivors, and the fact that recovery is highly personal and complex.⁸

By definition, patients with PTSD have endured some traumatic event. Therefore, ideal care teams will ask patients about things that may trigger their anxiety and then work to mitigate them. For example, some patients with PTSD have a severe startle response when woken up by someone touching them. When patients feel that they can share their concerns with their care team and their team honors that observation by waking them in a different way, trust and control may be gained. This process of asking for patient guidance and adjusting accordingly is consistent with a trauma-informed care approach.⁹ A true trauma-informed care approach involves the entire practice environment but examining and adjusting our own behavior and assumptions are good places to start.

Summary of recommended treatments

Psychotherapy is preferable over pharmacotherapy, but both can be combined as needed. Individual trauma-focused psychotherapies utilizing a primary component of exposure and/or cognitive restructuring have strong evidence for effectiveness but are primarily outpatient based.

For pharmacologic treatment, selective serotonin reuptake inhibitors (for example, sertraline, paroxetine, or fluoxetine) and serotonin norepinephrine reuptake inhibitors (for example, venlafaxine) monotherapy have strong evidence for effectiveness and can be started while inpatient. However, these medications typically take weeks to produce benefits. Recent trials studying prazosin, an alpha1-adrenergic receptor antagonist used to alleviate nightmares associated with PTSD, have demonstrated inefficacy or even harm,leading experts to caution against its use.^10,11 Finally, benzodiazepine and atypical antipsychotic usage should be restricted and used as a last resort.¹²

In summary, PTSD is common among veterans and nonveterans. While hospitalists may rarely admit patients because of their PTSD, they will often take care of patients who have PTSD as a comorbidity. Therefore, understanding the basics of PTSD and how hospitalization may exacerbate its symptoms can meaningfully improve care for these patients.

Dr. Fletcher is a hospitalist at the Milwaukee Veterans Affairs Medical Center and Froedtert Hospital in Wauwatosa, Wis. She is professor of internal medicine and program director for the internal medicine residency program at the Medical College of Wisconsin, Milwaukee. She is also faculty mentor for the VA’s Chief Resident for Quality and Safety. Dr. Kwan is a hospitalist at the VA San Diego Healthcare System and is associate professor at the University of California, San Diego, in the division of hospital medicine. He serves as an associate clerkship director of both the internal medicine clerkship and the medicine subinternship. He is the chair of SHM’s Physicians in Training committee. Dr. Steinbach is chief of hospital medicine at the Atlanta VA Medical Center and assistant professor of medicine in the division of hospital medicine at Emory University, Atlanta.

References

1. Kang HK et al. Posttraumatic stress disorder and chronic fatigue syndrome–like illness among Gulf War veterans: A population-based survey of 30,000 veterans. Am J Epidemiol. 2003;157(2):141-8.

2. Kessler RC et al. Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005; 62(6):593-602.

3. Cohen BE et al. Mental health diagnoses and utilization of VA nonmental health medical services among returning Iraq and Afghanistan veterans. J Gen Intern Med. 2010;25(1):18-24.

4. Haviland MG et al. Posttraumatic stress disorder–related hospitalizations in the United States (2002-2011): Rates, co-occurring illnesses, suicidal ideation/self-harm, and hospital charges. J Nerv Ment Dis. 2016; 204(2):78-86.

5. Aurora RN et al. Best practice guide for the treatment of nightmare disorder in adults. J Clin Sleep Med. 2010;6(4):389-401.

6. Blanaru M et al. The effects of music relaxation and muscle relaxation techniques on sleep quality and emotional measures among individuals with posttraumatic stress disorder. Ment Illn. 2012;4(2):e13.

7. Tello M. (2018, Oct 16). Trauma-informed care: What it is, and why it’s important. Retrieved March 18, 2019, from https://www.health.harvard.edu/blog/trauma-informed-care-what-it-is-and-why-its-important-2018101613562.

8. Harris M et al. Using trauma theory to design service systems. San Francisco: 2001.

9. Substance abuse and mental health services administration. SAMHSA’s concept of trauma and guidance for a trauma-informed approach. HHS publication no. SMA 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2014.

10. Raskind MA et al. Trial of prazosin for posttraumatic stress disorder in military veterans. N Engl J Med. 2018 Feb 8;378(6):507-7.

11. McCall WV et al. A pilot, randomized clinical trial of bedtime doses of prazosin versus placebo in suicidal posttraumatic stress disorder patients with nightmares. J Clin Psychopharmacol. 2018 Dec;38(6):618-21.

12. U.S. Department of Veterans Affairs/U.S. Department of Defense. Clinical practice guideline for the management of posttraumatic stress disorder and acute stress reaction 2017. Accessed February 18, 2019.

“I need to get out of here! I haven’t gotten any sleep, my medications never come on time, and I feel like a pincushion. I am leaving NOW!” The commotion interrupts your intern’s meticulous presentation as your team quickly files into the room. You find a disheveled, visibly frustrated man tearing at his intravenous line, surrounded by his half-eaten breakfast and multiple urinals filled to various levels. His IV pump is beeping, and telemetry wires hang haphazardly off his chest.

Mr. Smith had been admitted for a heart failure exacerbation. You’d been making steady progress with diuresis but are now faced with a likely discharge against medical advice if you can’t defuse the situation.

As hospitalists, this scenario might feel eerily familiar. Perhaps Mr. Smith had enough of being in the hospital and just wanted to go home to see his dog, or maybe the food was not up to his standards.

However, his next line stops your team dead in its tracks. “I feel like I am in Vietnam all over again. I am tied up with all these wires and feel like a prisoner! Please let me go.” It turns out that Mr. Smith had a comorbidity that was overlooked during his initial intake: posttraumatic stress disorder.

Impact of PTSD

PTSD is a diagnosis characterized by intrusive recurrent thoughts, dreams, or flashbacks that follow exposure to a traumatic event or series of events (see Table 1). While more common among veterans (for example, Vietnam veterans have an estimated lifetime prevalence of PTSD of 30.9% for men and 26.9% for women),¹ a national survey of U.S. households estimated the lifetime prevalence of PTSD among adult Americans to be 6.8%.² PTSD is often underdiagnosed and underreported by patients in the outpatient setting, leading to underrecognition and undertreatment of these patients in the inpatient setting.

Although it may not be surprising that patients with PTSD use more mental health services, they are also more likely to use nonmental health services. In one study, total utilization of outpatient nonmental health services was 91% greater in veterans with PTSD, and these patients were three times more likely to be hospitalized than those without any mental health diagnoses.³ Additionally, they are likely to present later and stay longer when compared with patients without PTSD. One study estimated the cost of PTSD-related hospitalization in the United States from 2002 to 2011 as being $34.9 billion.⁴ Notably, close to 95% of hospitalizations in this study listed PTSD as a secondary rather than primary diagnosis, suggesting that the vast majority of these admitted patients are cared for by frontline providers who are not trained mental health professionals.

How PTSD manifests in the hospital

But, how exactly can the hospital environment contribute to decompensation of PTSD symptoms? Unfortunately, there is little empiric data to guide us. Based on what we do know of PTSD, we offer the following hypotheses.

Patients with PTSD may feel a loss of control or helplessness when admitted to the inpatient setting. For example, they cannot control when they receive their medications or when they get their meals. The act of showering or going outside requires approval. In addition, they might perceive they are being “ordered around” by staff and may be carted off to a study without knowing why the study is being done in the first place.

Triggers in the hospital environment may contribute to PTSD flares. Think about the loud, beeping IV pump that constantly goes off at random intervals, disrupting sleep. What about a blood draw in the early morning where the phlebotomist sticks a needle into the arm of a sleeping patient? Or the well-intentioned provider doing prerounds who wakes a sleeping patient with a shake of the shoulder or some other form of physical touch? The multidisciplinary team crowding around their hospital bed? For a patient suffering from PTSD, any of these could easily set off a cascade of escalating symptoms.

Knowing that these triggers exist, can anything be done to ameliorate their effects? We propose some practical suggestions for improving the hospital experience for patients with PTSD.

Strategies to combat PTSD in the inpatient setting

Perhaps the most practical place to start is with preserving sleep in hospitalized patients with PTSD. The majority of patients with PTSD have sleep disturbances, and interrupted sleep routines in these patients can exacerbate nightmares and underlying psychiatric issues.⁵ Therefore, we should strive to avoid unnecessary awakenings.

While this principle holds true for all hospitalized patients, it must be especially prioritized in patients with PTSD. Ask yourself these questions during your next admission: Must intravenous fluids run 24 hours a day, or could they be stopped at 6 p.m.? Are vital signs needed overnight? Could the last dose of furosemide occur at 4 p.m. to avoid nocturia?

Another strategy involves bedtime routines. Many of these patients may already follow a home sleep routine as part of their chronic PTSD management. To honor these habits in the hospital might mean that staff encourage turning the lights and the television off at a designated time. Additionally, the literature suggests music therapy can have a significant impact on enhanced sleep quality. When available, music therapy may reduce insomnia and decrease the amount of time prior to falling asleep.⁶

Other methods to counteract PTSD fall under the general principle of “trauma-informed care.” Trauma-informed care comprises practices promoting a culture of safety, empowerment, and healing.⁷ It is a mindful and sensitive approach that acknowledges the pervasive nature of trauma exposure, the reality of ongoing adverse effects in trauma survivors, and the fact that recovery is highly personal and complex.⁸

By definition, patients with PTSD have endured some traumatic event. Therefore, ideal care teams will ask patients about things that may trigger their anxiety and then work to mitigate them. For example, some patients with PTSD have a severe startle response when woken up by someone touching them. When patients feel that they can share their concerns with their care team and their team honors that observation by waking them in a different way, trust and control may be gained. This process of asking for patient guidance and adjusting accordingly is consistent with a trauma-informed care approach.⁹ A true trauma-informed care approach involves the entire practice environment but examining and adjusting our own behavior and assumptions are good places to start.

Summary of recommended treatments

Psychotherapy is preferable over pharmacotherapy, but both can be combined as needed. Individual trauma-focused psychotherapies utilizing a primary component of exposure and/or cognitive restructuring have strong evidence for effectiveness but are primarily outpatient based.

For pharmacologic treatment, selective serotonin reuptake inhibitors (for example, sertraline, paroxetine, or fluoxetine) and serotonin norepinephrine reuptake inhibitors (for example, venlafaxine) monotherapy have strong evidence for effectiveness and can be started while inpatient. However, these medications typically take weeks to produce benefits. Recent trials studying prazosin, an alpha1-adrenergic receptor antagonist used to alleviate nightmares associated with PTSD, have demonstrated inefficacy or even harm,leading experts to caution against its use.^10,11 Finally, benzodiazepine and atypical antipsychotic usage should be restricted and used as a last resort.¹²

In summary, PTSD is common among veterans and nonveterans. While hospitalists may rarely admit patients because of their PTSD, they will often take care of patients who have PTSD as a comorbidity. Therefore, understanding the basics of PTSD and how hospitalization may exacerbate its symptoms can meaningfully improve care for these patients.

Dr. Fletcher is a hospitalist at the Milwaukee Veterans Affairs Medical Center and Froedtert Hospital in Wauwatosa, Wis. She is professor of internal medicine and program director for the internal medicine residency program at the Medical College of Wisconsin, Milwaukee. She is also faculty mentor for the VA’s Chief Resident for Quality and Safety. Dr. Kwan is a hospitalist at the VA San Diego Healthcare System and is associate professor at the University of California, San Diego, in the division of hospital medicine. He serves as an associate clerkship director of both the internal medicine clerkship and the medicine subinternship. He is the chair of SHM’s Physicians in Training committee. Dr. Steinbach is chief of hospital medicine at the Atlanta VA Medical Center and assistant professor of medicine in the division of hospital medicine at Emory University, Atlanta.

References

1. Kang HK et al. Posttraumatic stress disorder and chronic fatigue syndrome–like illness among Gulf War veterans: A population-based survey of 30,000 veterans. Am J Epidemiol. 2003;157(2):141-8.

2. Kessler RC et al. Lifetime prevalence and age-of-onset distributions of DSM-IV disorders in the National Comorbidity Survey Replication. Arch Gen Psychiatry. 2005; 62(6):593-602.

3. Cohen BE et al. Mental health diagnoses and utilization of VA nonmental health medical services among returning Iraq and Afghanistan veterans. J Gen Intern Med. 2010;25(1):18-24.

4. Haviland MG et al. Posttraumatic stress disorder–related hospitalizations in the United States (2002-2011): Rates, co-occurring illnesses, suicidal ideation/self-harm, and hospital charges. J Nerv Ment Dis. 2016; 204(2):78-86.

5. Aurora RN et al. Best practice guide for the treatment of nightmare disorder in adults. J Clin Sleep Med. 2010;6(4):389-401.

6. Blanaru M et al. The effects of music relaxation and muscle relaxation techniques on sleep quality and emotional measures among individuals with posttraumatic stress disorder. Ment Illn. 2012;4(2):e13.

7. Tello M. (2018, Oct 16). Trauma-informed care: What it is, and why it’s important. Retrieved March 18, 2019, from https://www.health.harvard.edu/blog/trauma-informed-care-what-it-is-and-why-its-important-2018101613562.

8. Harris M et al. Using trauma theory to design service systems. San Francisco: 2001.

9. Substance abuse and mental health services administration. SAMHSA’s concept of trauma and guidance for a trauma-informed approach. HHS publication no. SMA 14-4884. Rockville, MD: Substance Abuse and Mental Health Services Administration; 2014.

10. Raskind MA et al. Trial of prazosin for posttraumatic stress disorder in military veterans. N Engl J Med. 2018 Feb 8;378(6):507-7.

11. McCall WV et al. A pilot, randomized clinical trial of bedtime doses of prazosin versus placebo in suicidal posttraumatic stress disorder patients with nightmares. J Clin Psychopharmacol. 2018 Dec;38(6):618-21.

12. U.S. Department of Veterans Affairs/U.S. Department of Defense. Clinical practice guideline for the management of posttraumatic stress disorder and acute stress reaction 2017. Accessed February 18, 2019.