Applying RE-AIM to evaluations of Veterans Health Administration Enterprise-Wide Initiatives: lessons learned.

Introduction: The United States Veterans Health Administration (VHA) Office of Rural Health funds Enterprise-Wide Initiatives (system-wide initiatives) to spread promising practices to rural Veterans. The Office requires that evaluations of Enterprise-Wide Initiatives use the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. This presents a unique opportunity to understand the experience of using RE-AIM across a series of evaluations. The authors conducted a study to document the benefits and pitfalls of using RE-AIM, capture the variety of ways that the team captured the elements of RE-AIM, and develop recommendations for the future use of RE-AIM in evaluation. Materials and methods: The authors first conducted a document review to capture pre-existing information about how RE-AIM was used. They subsequently facilitated two focus groups to gather more detailed information from team members who had used RE-AIM. Finally, they used member-checking throughout the writing process to ensure accurate data representation and interpretation and to gather additional feedback. Results: Four themes emerged from the document review, focus groups, and member checking. RE-AIM: provides parameters and controls the evaluation scope, "buckets" are logical, plays well with other frameworks, and can foster collaboration or silo within a team. Challenges and attributes for each RE-AIM dimension were also described. Discussion: Overall, participants reported both strengths and challenges to using RE-AIM as an evaluation framework. The overarching theme around the challenges with RE-AIM dimensions was the importance of context. Many of these benefits and challenges of using RE-AIM may not be unique to RE-AIM and would likely occur when using any prescribed framework. The participants reported on the RE-AIM domains in a variety of ways in their evaluation reports and were not always able capture data as originally planned. Recommendations included: start with an evaluation framework (or frameworks) and revisit it throughout the evaluation, consider applying RE-AIM PRISM (Practical Robust Implementation Framework) to gain a broader perspective, and intentionally integrate quantitative and qualitative team members, regardless of the framework used.

VA Outreach Is an Essential Area for Improving Veterans' Health Care Accessibility.

INTRODUCTION: The Veterans Health Administration (VHA) is tasked with providing access to health care to veterans of military service. However, many eligible veterans have either not yet enrolled or underutilized VHA services. Further study of barriers to access before veterans enroll in VHA care is necessary to understand how to address this issue. The ChooseVA (née MyVA Access) initiative aims to achieve this mission to improve veterans' health care access. Although veteran outreach was not specifically addressed by the initiative, it is a critical component of improving veterans' access to health care. Findings from this multisite evaluation of ChooseVA implementation describe sites' efforts to improve VHA outreach and veterans' experiences with access. MATERIALS AND METHODS: This quality improvement evaluation employed a multi-method qualitative methodology, including 127 semi-structured interviews and 81 focus groups with VHA providers and staff ("VHA staff") completed during 21 VHA medical center facility site visits between July and November 2017 and 48 telephone interviews with veterans completed between May and October 2018. Interviews and focus groups were transcribed and analyzed using deductive and inductive analysis to capture challenges and strategies to improve VHA health care access (VHA staff data), experiences with access to care (veteran data), barriers and facilitators to care (staff and veteran data), contextual factors, and emerging categories and themes. We developed focused themes describing perceived challenges, descriptions of VHA staff efforts to improve veteran outreach, and veterans' experiences with accessing VHA health care. RESULTS: VHA staff and veteran respondents reported a lack of veteran awareness of eligibility for VHA services. Veterans reported limited understanding of the range of services offered. This awareness gap served as a barrier to veterans' ability to successfully access VHA health care services. Veterans described this awareness gap as contributing to delayed VHA enrollment and delayed or underutilized health care benefits and services. Staff focused on community outreach and engaging veterans for VHA enrollment as part of their efforts to implement the ChooseVA access initiative. Staff and veteran respondents agreed that outreach efforts were helpful for engaging veterans and facilitating access. CONCLUSIONS: Although efforts across VHA programs informed veterans about VHA services, our results suggest that both VHA staff and veterans agreed that missed opportunities exist. Gaps include veterans' lack of awareness or understanding of VHA benefits for which they qualify for. This can result in delayed access to care which may negatively impact veterans, including those separating from the military and vulnerable populations such as veterans who experience pregnancy or homelessness.

Voices of Women Veterans with Lower Limb Prostheses: a Qualitative Study.

BACKGROUND: Women Veterans with amputation are a group with unique needs whose numbers have grown over the last 5 years, accounting for nearly 3% of all Veterans with amputation in 2019. Although identified as a national priority by the Veterans Health Administration, the needs of this population have remained largely underrepresented in amputation research. OBJECTIVE: To describe the experiences of women Veterans with lower extremity amputation (LEA) related to prosthetic care provision and devices. DESIGN: National qualitative study using semi-structured individual interviews. PARTICIPANTS: Thirty women Veterans with LEA who had been prescribed a prosthesis at least 12 months prior. APPROACH: Inductive content analysis. KEY RESULTS: Four key themes emerged: (1) a sense of "feeling invisible" and lacking a connection with other women Veterans with amputation; (2) the desire for prosthetic devices that meet their biological and social needs; (3) the need for individualized assessment and a prosthetic limb prescription process that is tailored to women Veterans; the current process was often perceived as biased and either dismissive of women's concerns or failing to adequately solicit them; and (4) the desire for prosthetists who listen to and understand women's needs. CONCLUSIONS: Women Veterans with LEA articulated themes reminiscent of those previously reported by male Veterans with LEA, such as the importance of prostheses and the central role of the provider-patient relationship. However, they also articulated unique needs that could translate into specific strategies to improve prosthetic care, such as integrating formal opportunities for social support and peer interaction for women Veterans with LEA, advocating for administrative changes and research efforts to expand available prosthetic component options, and ensuring that clinical interactions are gender-sensitive and free of bias.

Care-seeking and delay of care during COPD exacerbations.

Patients who receive earlier treatment for acute exacerbations of chronic obstructive pulmonary disease (COPD) have a better prognosis, including earlier symptom resolution and reduced risk of future emergency-department visits (ED) or hospitalizations. However, many patients delay seeking care or do not report worsening symptoms to their healthcare provider. In this study, we aimed to understand how patients perceived their breathing symptoms and identify factors that led to seeking or delaying care for an acute exacerbation of COPD. We conducted semistructured interviews with 60 individuals following a recent COPD exacerbation. Participants were identified from a larger study of outpatients with COPD by purposive sampling by exacerbation type: 15 untreated, 15 treated with prednisone and/or antibiotics in the outpatient setting, 16 treated in an urgent care or ED setting, and 14 hospitalized. Data were analyzed using inductive content analysis. Participants were primarily male (97%) with a mean age of 69.1 ± 6.9 years, mean FEV1 1.42 (±0.63), and mean mMRC dyspnea of 2.7 (±1.1). We identified 4 primary themes: (i) access and attitudinal barriers contribute to reluctance to seek care, (ii) waiting is a typical response to new exacerbations, (iii) transitioning from waiting to care-seeking: the tipping point, and (iv) learning from and avoiding worse outcomes. Interventions to encourage earlier care-seeking for COPD exacerbations should consider individuals' existing self-management approaches, address attitudinal barriers to seeking care, and consider health-system changes to increase access to non-emergent outpatient treatment for exacerbations.Clinical Trial Registration NCT02725294.

Provider Perspectives on Implementing Shared Decision Making for PTSD Treatment in VA Primary Care.

Shared decision making is an important implementation "pull" strategy for increasing uptake of evidence-based mental health practices. In this qualitative study, we explored provider perspectives on implementing shared decision making at the point of mental health treatment initiation using a publicly available, patient-facing decision support tool for post-traumatic stress disorder (PTSD). We conducted semi-structured interviews with 22 mental health providers (psychiatrists, nurses, psychologists, and social workers) working in one of five VA primary care clinics. Interviewed were analyzed using thematic analysis. Provider were enthusiastic about using decision aids as a source of high quality information that could improve patient experience and confidence in treatment. However, providers had concerns about decision aid accessibility, time constraints to conduct shared decision making in-session, and patient motivation to engage in shared decision making. Providers stated they would prefer to use shared decision making with patients that they felt were most likely to follow through with treatment. While providers believed that shared decision making could improve PTSD treatment planning, they thought it most appropriate for patients with the highest levels of motivation and fewest barriers to care. These beliefs may limit widespread adoption and reflect missed opportunities to reach difficult-to-engage patients.

Differences in Perceptions of and Practices Regarding Treatment of Alcohol Use Disorders Among VA Primary Care Providers in Urban and Rural Clinics.

BACKGROUND: Effective behavioral and pharmacological treatments are available and recommended for patients with alcohol use disorders (AUD) but rarely received. Barriers to receipt and provision of evidence-based AUD treatments delivered by specialists may be greatest in rural areas. METHODS: A targeted subanalysis of qualitative interview data collected from primary care providers at 5 Veterans Affairs clinics was conducted to identify differences in provider perceptions and practices regarding AUD treatment across urban and rural clinics. Key contacts were used to recruit 24 providers from 3 "urban" clinics at medical centers and 2 "rural" community-based outpatient clinics. Providers completed 30-minute semistructured interviews, which were recorded, transcribed, and analyzed using inductive content analysis. RESULTS: Thirteen urban and 11 rural providers participated. Urban and rural providers differed regarding referral practices and in perceptions of availability and utility of specialty addictions treatment. Urban providers described referral to specialty treatment as standard practice, while rural providers reported substantial barriers to specialty care access and infrequent specialty care referral. Urban providers viewed specialty addictions treatment as accessible and comprehensive, and perceived addictions providers as "experts" and collaborators, whereas rural providers perceived inadequate support from the health care system for AUD treatment. Urban providers desired greater integration with specialty addictions care while rural providers wanted access to local addictions treatment resources. CONCLUSIONS: Providers in rural settings view referral to specialty addictions treatment as impractical and resources inadequate to treat AUD. Additional work is needed to understand the unique needs of rural clinics and decrease barriers to AUD treatment.

Barriers to and Facilitators of Alcohol Use Disorder Pharmacotherapy in Primary Care: A Qualitative Study in Five VA Clinics.

BACKGROUND: Three medications are FDA-approved and recommended for treating alcohol use disorders (AUD) but they are not offered to most patients with AUD. Primary care (PC) may be an optimal setting in which to offer and prescribe AUD medications, but multiple barriers are likely. OBJECTIVE: This qualitative study used social marketing theory, a behavior change approach that employs business marketing techniques including "segmenting the market," to describe (1) barriers and facilitators to prescribing AUD medications in PC, and (2) beliefs of PC providers after they were segmented into groups more and less willing to prescribe AUD medications. DESIGN: Qualitative, interview-based study. PARTICIPANTS: Twenty-four providers from five VA PC clinics. APPROACH: Providers completed in-person semi-structured interviews, which were recorded, transcribed, and analyzed using social marketing theory and thematic analysis. Providers were divided into two groups based on consensus review. KEY RESULTS: Barriers included lack of knowledge and experience, beliefs that medications cannot replace specialty addiction treatment, and alcohol-related stigma. Facilitators included training, support for prescribing, and behavioral staff to support follow-up. Providers more willing to prescribe viewed prescribing for AUD as part of their role as a PC provider, framed medications as a potentially effective "tool" or "foot in the door" for treating AUD, and believed that providing AUD medications in PC might catalyze change while reducing stigma and addressing other barriers to specialty treatment. Those less willing believed that medications could not effectively treat AUD, and that treating AUD was the role of specialty addiction treatment providers, not PC providers, and would require time and expertise they do not have. CONCLUSIONS: We identified barriers to and facilitators of prescribing AUD medications in PC, which, if addressed and/or capitalized on, may increase provision of AUD medications. Providers more willing to prescribe may be the optimal target of a customized implementation intervention to promote changes in prescribing.

Primary Care Providers' Interest in Using a Genetic Test to Guide Alcohol Use Disorder Treatment.

BACKGROUND: Efforts to identify genetic moderators of pharmacotherapy response have generated interest in clinical applications of pharmacogenetic tests in alcohol use disorder (AUD) treatment. To date, no research on providers' interest in using pharmacogenetic tests in the context of AUD treatment has been reported. We conducted qualitative interviews with primary care providers from 5 clinics in the Veterans Health Administration (VA) to assess their interest in using a hypothetical genetic test to inform treatment of AUD with pharmacotherapy. METHODS: Key contacts were used to recruit 24 providers from 5 primary care clinics associated with a single large VA medical facility. Participants completed 30-minute in-person semi-structured interviews focused on barriers and facilitators to provision of pharmacotherapy for AUD. Interviews included a hypothetical scenario regarding the availability of a genetic test to inform AUD pharmacotherapy provision and/or selection. Provider responses to the hypothetical scenario were recorded, transcribed and analyzed qualitatively using inductive content analysis. Data were independently coded by three investigators, and themes were identified via consensus. RESULTS: Participants were generally interested in a genetic test to aid in AUD treatment planning. Five common themes were identified, including: perceived benefits of a pharmacogenetic test (e.g., aiding with therapeutic choice, positively impacting patient motivation for and engagement with AUD treatment), perceived drawbacks (e.g., limiting potential benefits of pharmacotherapy by reducing the target population for its receipt, adverse impacts of "negative" results), caveats to clinical utility (e.g., utility would depend on prognostic accuracy and/or medication characteristics), uncertainty as to whether such a test would impact clinical decision-making, and pragmatic barriers to use (costs and other resources, such as laboratory facilities). CONCLUSIONS: Primary care providers in this study generally believed a genetic test to aid in AUD treatment planning would be useful, due to its potential to hone treatment choice as well as to influence patient motivation and adherence to treatment. However, providers acknowledged that a test's utility would depend on the strength of its prognostic characteristics, its other benefits relative to standard care, and lack of pragmatic barriers.

Racial/Ethnic Differences in the Prevalence of Clinically Recognized Alcohol Use Disorders Among Patients from the U.S. Veterans Health Administration.

BACKGROUND: Alcohol use disorders (AUDs) are common and have worse consequences for racial/ethnic minority groups than whites. AUDs are often underrecognized in clinical settings, but it is unknown whether the prevalence of clinically recognized AUD varies across racial/ethnic groups. We describe the overall and age- and gender-stratified prevalence of clinically documented AUD across 3 racial/ethnic groups in a national sample of Veterans Health Administration (VA) patients. METHODS: Data from VA's National Patient Care Database identified all patients who used VA care in Fiscal Year 2012 and were documented as black, Hispanic, or white race/ethnicity. The prevalence of clinically recognized AUD based on ICD-9 diagnoses was compared across racial/ethnic groups overall and within gender and age groups using chi-square tests of independence. RESULTS: Among 4,666,403 eligible patients, 810,902 (17.4%) were black, 302,331 (6.5%) were Hispanic, and 3,553,170 (76.1%) were white. The prevalence of clinically recognized AUD was 6.5% overall, and 9.8% (95% CI 9.8 to 9.9) among black, 7.1% (95% CI 7.0 to 7.2) among Hispanic, and 5.7% (95% CI 5.6 to 5.7) among white patients (p < 0.001). This pattern generally held for men, regardless of age group, with the exception of those 18 to 29 years old, for whom no difference was observed across race/ethnicity. Among women, the prevalence of AUD was generally lowest among Hispanic and highest among black patients, with the exception of those 30 to 44 years old, for whom the highest prevalence was among whites. CONCLUSIONS: In contrast to findings from the general population, the prevalence of clinically recognized AUD among VA patients is generally highest among black men and women and lowest among white men and Hispanic women. This is the first study to describe the prevalence of clinically recognized AUD across racial/ethnic groups in a large healthcare system. Future research comparing estimates to diagnoses based on structured gold-standard assessments is needed to understand whether AUDs are under- or overidentified.

Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care.

RATIONALE: Communication with family of critically ill patients is often poor and associated with family distress. OBJECTIVES: To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care. METHODS: We conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict. MEASUREMENTS AND MAIN RESULTS: Outcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001). CONCLUSIONS: Communication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).

Local Implementation of Alcohol Screening and Brief Intervention at Five Veterans Health Administration Primary Care Clinics: Perspectives of Clinical and Administrative Staff.

BACKGROUND AND OBJECTIVE: Population-based alcohol screening, followed by brief intervention for patients who screen positive for unhealthy alcohol use, is widely recommended for primary care settings and considered a top prevention priority, but is challenging to implement. However, new policy initiatives in the U.S., including the Affordable Care Act, may help launch widespread implementation. While the nationwide Veterans Health Administration (VA) has achieved high rates of documented alcohol screening and brief intervention, research has identified quality problems with both. We conducted a qualitative key informant study to describe local implementation of alcohol screening and brief intervention from the perspectives of frontline adopters in VA primary care in order to understand the process of implementation and factors underlying quality problems. METHODS: A purposive snowball sampling method was used to identify and recruit key informants from 5 VA primary care clinics in the northwestern U.S. Key informants completed 20-30 minute semi-structured interviews, which were recorded, transcribed, and qualitatively analyzed using template analysis. RESULTS: Key informants (N=32) included: clinical staff (n=14), providers (n=14), and administrative informants (n=4) with varying participation in implementation of and responsibility for alcohol screening and brief intervention at the medical center. Ten inter-related themes (5 a priori and 5 emergent) were identified and grouped into 3 applicable domains of Greenhalgh's conceptual framework for dissemination of innovations, including values of adopters (theme 1), processes of implementation (themes 2 and 3), and post-implementation consequences in care processes (themes 4-10). While key informants believed alcohol use was relevant to health and important to address, the process of implementation (in which no training was provided and electronic clinical reminders "just showed up") did not address critical training and infrastructure needs. Key informants lacked understanding of the goals of screening and brief intervention, believed referral to specialty addictions treatment (as opposed to offering brief intervention) was the only option for following up on a positive screen, reported concern regarding limited availability of treatment resources, and lacked optimism regarding patients' interest in seeking help. CONCLUSIONS: Findings suggest that the local process of implementing alcohol screening and brief intervention may have inadequately addressed important adopter needs and thus may have ultimately undermined, instead of capitalized on, staff and providers' belief in the importance of addressing alcohol use as part of primary care. Additional implementation strategies, such as training or academic detailing, may address some unmet needs and help improve the quality of both screening and brief intervention. However, these strategies may be resource-intensive and insufficient for comprehensively addressing implementation barriers.

Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU.

The intensive care unit (ICU), where death is common and even survivors of an ICU stay face the risk of long-term morbidity and re-admissions to the ICU, represents an important setting for improving communication about palliative and end-of-life care. Communication about the goals of care in this setting should be a high priority since studies suggest that the current quality of ICU communication is often poor and is associated with psychological distress among family members of critically ill patients. This paper describes the development and evaluation of an intervention designed to improve the quality of care in the ICU by improving communication among the ICU team and with family members of critically ill patients. We developed a multi-faceted, interprofessional intervention based on self-efficacy theory. The intervention involves a "communication facilitator" - a nurse or social worker - trained to facilitate communication among the interprofessional ICU team and with the critically ill patient's family. The facilitators are trained using three specific content areas: a) evidence-based approaches to improving clinician-family communication in the ICU, b) attachment theory allowing clinicians to adapt communication to meet individual family member's communication needs, and c) mediation to facilitate identification and resolution of conflict including clinician-family, clinician-clinician, and intra-family conflict. The outcomes assessed in this randomized trial focus on psychological distress among family members including anxiety, depression, and post-traumatic stress disorder at 3 and 6 months after the ICU stay. This manuscript also reports some of the lessons that we have learned early in this study.

Supporting hope and prognostic information: nurses' perspectives on their role when patients have life-limiting prognoses.

CONTEXT: Clinicians often feel challenged by the need to deliver difficult prognostic information to patients with a life-limiting illness while, at the same time, support their hopes. Few studies have examined nurses' perspectives on their roles in meeting these patient and family needs. OBJECTIVES: Our objectives were to 1) describe nurses' perspectives on meeting patients' needs for hope and illness information and 2) offer insights for interventions designed to improve communication about end-of-life care for patients and their families. METHODS: Using experienced interviewers, we conducted one-on-one, semistructured interviews with 22 nurses caring for patients with advanced chronic obstructive pulmonary disease or cancer. Interviews were analyzed using a limited application of grounded theory. RESULTS: Three themes emerged: 1) Nurses support patients' hopes by understanding individual aspects of these hopes, focusing on patient's quality of life, and building trust with patients; 2) Nurses provide prognostic information by assessing what the patient knows and following their lead. Nurses report doing these two activities independently; and 3) Nurses identify activities associated with the provision of prognostic information that required collaboration with physicians. Important barriers that complicate effective discussion of prognosis with patients and families were identified. CONCLUSIONS: Nurses describe behaviors that are useful when meeting patients' and families' needs for hope and which they are comfortable implementing in practice, without collaboration with other clinicians. By contrast, most behaviors related to meeting patients' and families' needs regarding prognostic information are completed collaboratively with physicians. These findings provide insight for the development of interdisciplinary interventions targeting communication around end-of-life care.

Abandonment at the end of life from patient, caregiver, nurse, and physician perspectives: loss of continuity and lack of closure.

BACKGROUND: Surveys and anecdotes suggest that patients and family members sometimes feel abandoned by their physicians at the transition to end-of-life care. To our knowledge, no prior studies describe abandonment prospectively. METHODS: We conducted a longitudinal, qualitative study of patients, family caregivers, physicians, and nurses using a community-based sample. Using a purposive strategy, we recruited 31 physicians who identified 55 patients with incurable cancer or advanced chronic obstructive pulmonary disease, 36 family caregivers, and 25 nurses. Eligible patients met the prognostic criterion that their physician "would not be surprised" if death occurred within a year. Qualitative, semistructured interviews were performed at enrollment, 4 to 6 months, and 12 months and were audiotaped, transcribed, and coded by an interdisciplinary team. When asked to talk about hope and prognostic information, participants spontaneously raised concerns about abandonment, and we incorporated this topic into our interview guide. RESULTS: Two themes were identified: before death, abandonment worries related to loss of continuity between patient and physician; at the time of death or after, feelings of abandonment resulted from lack of closure for patients and families. Physicians reported lack of closure but did not discuss this as abandonment. CONCLUSIONS: The professional value of nonabandonment at the end of life consists of 2 different elements: (1) providing continuity, of both expertise and the patient-physician relationship; and (2) facilitating closure of an important therapeutic relationship. Framing this professional value as continuity and closure could promote the development of interventions to improve this aspect of end-of-life care.

An approach to understanding the interaction of hope and desire for explicit prognostic information among individuals with severe chronic obstructive pulmonary disease or advanced cancer.

BACKGROUND: Physicians often report that they are reluctant to discuss prognosis for life-threatening illnesses with patients and family out of concern for destroying their hope, yet there is little empirical research describing how patients and family incorporate their needs for hope with desires for prognostic information. OBJECTIVE: We conducted a qualitative study to examine the perspectives of patients, family, physicians, and nurses on the simultaneous need for supporting hope and discussing prognosis. METHODS: We conducted in-depth longitudinal qualitative interviews with patients with either advanced cancer or severe chronic obstructive pulmonary disease (COPD), along with their family, physicians, and nurses. We used principles of grounded theory to analyze the transcripts and evaluated a conceptual model with four diagrams depicting different types of approaches to hope and prognostic information. RESULTS: We interviewed 55 patients, 36 family members, 31 physicians, and 25 nurses representing 220 hours of interviews. Asking patients directly "how much information" they wanted was, by itself, not useful for identifying information needs, but in-depth questioning identified variability in patients' and family members' desires for explicit prognostic information. All but 2 patients endorsed at least one of the diagrams concerning the interaction of hope and prognostic information and some patients described moving from one diagram to another over the course of their illness. Respondents also described two different approaches to communication about prognosis based on the diagram selected: two of the four diagrams suggested a direct approach and the other two suggested a cautious, indirect approach. CONCLUSIONS: This study found important variability in the ways different patients with life-limiting illnesses approach the interaction of wanting support for hope and prognostic information from their clinicians. The four-diagram approach may help clinicians understand individual patients and families, but further research is needed to determine the utility of these diagrams for improving communication about end-of-life care.