Feasibility and Acceptability of an Agenda-Setting Kit in the Care of People With Type 2 Diabetes: The QBSAFE ASK Feasibility Study.

This article reports on a study to assess the feasibility of research procedures and acceptability of QBSAFE, a set of conversation cards focused on quality of life, treatment burden, safety, and avoidance of future events in people with type 2 diabetes. The study enrolled 84 patients and 7 clinicians. Of the 58 patients who completed questionnaires, 64% agreed that the QBSAFE agenda-setting kit (ASK) helped them discuss their situation, 78% agreed that others could benefit from it, and 38% said they would use it again. Most clinicians felt confident responding to issues (in 89% of encounters) and said they would use the kit again (78%) and recommend it to colleagues (82%). The QBSAFE ASK can be feasibly implemented and holds promise in facilitating discussion and collaborative problem-solving.

The role of the purposeful shared decision making model in vascularized composite allotransplantation.

For some patients who have lost the lower part of an arm, hand transplant offers the possibility of receiving a new limb with varying degrees of sensation and function. This procedure, Vascularized Composite Allotransplantation (VCA), is demanding for patients and their care community and comes with significant risks. As a high-stakes decision, patients interested in VCA are subject to extensive clinical evaluation and eligibility decision making. Patients and their care community must also decide if hand transplant (versus other approaches including rehabilitative therapies with or without prosthesis) is right for them. This decision making is often confusing and practically and emotionally fraught. It is complicated in four ways: by the numerous beneficial and harmful potential effects of hand transplant or other options, the number of people affected by VCA and the diverse or conflicting positions that they may hold, the practical demands and limitations of the patient's life situation, and the existential significance of limb loss and transplant for the patient's being. Patients need support in working through these treatment determining issues. Evaluation does not provide this support. Shared decision making (SDM) is a method of care that helps patients think, talk, and feel their way through to the right course of action for them. However, traditional models of SDM that focus on weighing possible beneficial and harmful effects of treatments are ill-equipped to tackle the heterogeneous issues of VCA. A recent model, Purposeful SDM extends the range of troubling issues that SDM can help support beyond opposing effects, to include conflicting positions, life situations, and existential being. In this paper we explore the pertinence of these issues in VCA, methods of SDM that each require of clinicians, the benefits of supporting patients with the breadth of issues in their unique problematic situations, implications for outcomes and practice, and extend the theory of the Purposeful SDM model itself based on the issues present in hand transplant decision making.

Not all cost conversations are the same: An exploration of potential value in cost conversations during Atrial fibrillation treatment decision making.

OBJECTIVES: To explore the cost conversations taking place when patients with atrial fibrillation and their clinicians decide on whether and how to use anticoagulation to prevent strokes. METHODS: Secondary qualitative thematic analysis of conversations from 476 clinical encounters in three sites of a multicenter randomized trial comparing usual care with and without a shared decision-making tool. RESULTS: We identified three themes with subthemes: (1) What was discussed: conversation content (2) How content was transmitted: communication patterns and (3) Implicit conversation drivers. Due to each patient's unique circumstances, bi-directional conversations focused on relationship- and solution-based content enabled better cost burden discovery. Conversation drivers included affordability, comorbidities, preferences, and uncertainty about future costs. CONCLUSIONS: Cost conversations were often initiated by clinicians, and if they did not invite a response, patients passively received information without understanding or weighing cost burden. When clinicians discussed cost information using relational or solution-focused content and bi-directional communication patients were more likely to engage in discussion including their unique situation. PRACTICE IMPLICATIONS: Solution-focused cost conversations can reduce financial treatment burden, but require estimates of out-of-pocket costs, insurance coverage, and long-term financial effects of various options. Conversation tools and information on financial resources are valuable to patients and clinicians.

Financial Toxicity Among Patients With Metastatic Prostate Cancer: A Mixed Methods Approach to Identify Effective Interventions.

INTRODUCTION: Financial toxicity associated with treatments for metastatic prostate cancer remains poorly defined. We sought to understand aspects of financial toxicity not captured in a commonly employed financial toxicity questionnaire and identify potential interventions to help alleviate financial toxicity through a convergent mixed methods approach. METHODS: Patients seen at our institution's advanced prostate cancer clinic were approached for completion of the Comprehensive Score for Financial Toxicity (COST-FACIT) questionnaire (quantitative analysis). A maximal variation purposive sample was chosen to participate in focus group discussions (qualitative analysis). Conventional content analysis was performed using an inductive approach. COST-FACIT scores were compared between patients experiencing high and low financial toxicity using Wilcoxon rank sum test. RESULTS: Three themes were identified through qualitative analysis: (1) workload, (2) coping strategies, and (3) communication. We found alignment with the existing theory of financial capacity across our findings. Two unique aspects of financial toxicity emerged that were not assessed quantitatively and deemed to be significant. Specifically, cost transparency (including health care teams knowledgeable about and willing to discuss costs) and inclusion of informal caregivers in financial toxicity screening and decision-making may guide future interventions aimed at limiting financial toxicity in this population. CONCLUSIONS: Prolonged treatment courses involving multiple lines of treatment with varying costs result in distinct financial toxicity components for patients with metastatic prostate cancer that are not assessed with COST-FACIT. Improving cost transparency, health care team knowledge and engagement, and providing resources to support informal caregivers may have a significant impact on the financial toxicity experienced by these patients.

Decisional Regret Surrounding Dialysis Initiation: A Comparative Analysis.

Rationale & Objective: Dialysis comes with a substantial treatment burden, so patients must select care plans that align with their preferences. We aimed to deepen the understanding of decisional regret with dialysis choices. Study Design: This study had a mixed-methods explanatory sequential design. Setting & Participants: All patients from a single academic medical center prescribed maintenance in-center hemodialysis or presenting for home hemodialysis or peritoneal dialysis check-up during 3 weeks were approached for survey. A total of 78 patients agreed to participate. Patients with the highest (15 patients) and lowest decisional regret (20 patients) were invited to semistructured interviews. Predictors: Decisional regret scale and illness intrusiveness scale were used in this study. Analytical Approach: Quantitatively, we examined correlations between the decision regret scale and illness intrusiveness scale and sorted patients into the highest and lowest decision regret scale quartiles for further interviews; then, we compared patient characteristics between those that consented to interview in high and low decisional regret. Qualitatively, we used an adapted grounded theory approach to examine differences between interviewed patients with high and low decisional regret. Results: Of patients invited to participate in the interviews, 21 patients (8 high regret, 13 low regret) agreed. We observed that patients with high decisional regret displayed resignation toward dialysis, disruption of their sense of self and social roles, and self-blame, whereas patients with low decisional regret demonstrated positivity, integration of dialysis into their identity, and self-compassion. Limitations: Patients with the highest levels of decisional regret may have already withdrawn from dialysis. Patients could complete interviews in any location (eg, home, dialysis unit, and clinical office), which may have influenced patient disclosure. Conclusions: Although all patients experienced disruption after dialysis initiation, patients' approach to adversity differs between patients experiencing high versus low regret. This study identifies emotional responses to dialysis that may be modifiable through patient-support interventions.

As part of a quality improvement initiative in our dialysis practice, a patient stated, "I wish I never started dialysis." This quote served as the catalyst for embarking on a research project with the aim to understand why patients living with end-stage kidney disease have regret about starting and continuing dialysis, a lifesaving but time-intensive measure. We surveyed and interviewed patients on the topic and learned that patients experiencing regret had a disrupted sense of self and blamed themselves for their need of dialysis. Patients with little to no regret demonstrated positivity and self-compassion. These findings will help health care professionals as they work with patients considering dialysis or having newly started dialysis.

Developing LHS scholars' competency around reducing burnout and moral injury.

Despite the known benefits of supportive work environments for promoting patient quality and safety and healthcare worker retention, there is no clear mandate for improving work environments within Learning Health Systems (LHS) nor an LHS wellness competency. Striking rises in burnout levels among healthcare workers provide urgency for this topic. Methods: We brought three experts on moral injury, burnout prevention, and ethics to a recurring, interactive LHS training program "Design Shop" session, harnessing scholars' ideas prior to the meeting. Generally following SQUIRE 2.0 guidelines, we evaluated the prework and discussion via informal content analysis to develop a set of pathways for developing moral injury and burnout prevention programs. Along these lines, we developed a new competency for moral injury and burnout prevention within LHS training programs. Results: In preparation for the session, scholars differentiated moral injury from burnout, highlighted the profound impact of COVID-19 on moral injury, and proposed testable interventions to reduce injury. Scholar and expert input was then merged into developing the new competency in moral injury and burnout prevention. In particular, the competency focuses on preparing scholars to (1) demonstrate knowledge of moral injury and burnout, (2) measure burnout, moral injury, and their remediable predictors, (3) use methods for improving burnout, (4) structure training programs with supportive work environments, and (5) embed burnout and moral injury prevention into LHS structures. Conclusions: Burnout and moral injury prevention have been largely omitted in LHS training. A competency related to burnout and moral injury reduction can potentially bring sustainable work lives for scholars and their colleagues, better incorporation of their science into clinical practice, and better outcomes for patients.

The impact of health and wellness coaching on patient-important outcomes in chronic illness care: A systematic review and meta-analysis.

BACKGROUND: Health and Wellness Coaching (HWC) may be beneficial in chronic condition care. We sought to appraise its effectiveness on quality of life (QoL), self-efficacy (SE), depression, and anxiety. METHODS: We searched MEDLINE, EMBASE, CINAHL, PsycINFO, and Cochrane CENTRAL for randomized trials published January 2005 - March 2023 that compared HWC to standard clinical care or another intervention without coaching. We examined QoL, SE, depression, or anxiety outcomes. Meta-analysis utilizing the random-effects model was used to estimate the pooled standardized mean difference (SMD). RESULTS: Thirty included studies demonstrated that HWC improved QoL within 3 months (SMD 0.62 95 % CI 0.22-1.02, p = 0.002), SE within 1.5 months (SMD 0.38, 95 % CI 0.03-0.73, p = 0.03), and depression at 3, 6, and 12 months (SMD 0.67, 95 % CI 0.13-1.20, p = 0.01), (SMD 0.72, 95 % CI 0.19-1.24, p = 0.006), and (SMD 0.41, 95 % CI 0.09-0.73, p = 0.01) Certainty in the evidence for most outcomes was either very low or low primarily due to the high risk of bias, heterogeneity, and imprecision. CONCLUSION: HWC improves QoL, SE, and depression across chronic illness populations. Future research needs to standardize intervention reporting and outcome collection. PRACTICE IMPLICATIONS: Future HWC studies should standardize intervention components, reporting, and outcome measures, apply relevant chronic illness theories, and aim to follow participants for greater than one year.

A Single-Center Retrospective Evaluation of Decision-Making and Factors Motivating Hand Transplant Candidates.

INTRODUCTION: Advancements in vascularized composite allotransplantation have made hand transplants possible for persons living with upper limb loss. Hand transplantation is not a life-saving procedure, but rather a quality-of-life enhancing procedure; hence the risk of morbidity and mortality must be weighed against improvements in function and appearance. This study explored the decision-making process of patients evaluated for hand transplantation. METHODS/APPROACH: A qualitative case series study using retrospective chart data of evaluations was conducted between January 1, 2011 and February 28, 2020. Notes were extracted and read by three reviewers. Each case was summarized noting similarities and differences. FINDINGS: Nine patients underwent evaluation. Eight were no longer under evaluation and did not receive transplant; one was still undergoing evaluation. Patient motivations for evaluation were dissatisfaction with prostheses or self-image, chronic pain, performing activities of daily living, occupation, burden placed on caregivers, and concerns about overuse of non-affected limbs. Patients chose not to pursue transplantation due to rehabilitation time, immunosuppression, alternative treatments, and social and financial challenges. The clinical team discontinued evaluations due to unmet evaluation requirements, medical contraindications, or treatment alternatives. Different modes of shared decision-making were present depending on the party most heavily featured in the charts as driving decisions. DISCUSSION: This was an examination of shared decision-making with hand transplant candidates who did not proceed to transplant. Reasons for choosing alternative strategies for management were multifactorial. Lessons learned regarding patient motivations and shared decision-making can inform future interventions to better support patients.

Why is the Implementation of Beta-Lactam Therapeutic Drug Monitoring for the Critically Ill Falling Short? A Multicenter Mixed-Methods Study.

BACKGROUND: Beta-lactam therapeutic drug monitoring (BL TDM; drug level testing) can facilitate improved outcomes in critically ill patients. However, only 10%-20% of hospitals have implemented BL TDM. This study aimed to characterize provider perceptions and key considerations for successfully implementing BL TDM. METHODS: This was a sequential mixed-methods study from 2020 to 2021 of diverse stakeholders at 3 academic medical centers with varying degrees of BL TDM implementation (not implemented, partially implemented, and fully implemented). Stakeholders were surveyed, and a proportion of participants completed semistructured interviews. Themes were identified, and findings were contextualized with implementation science frameworks. RESULTS: Most of the 138 survey respondents perceived that BL TDM was relevant to their practice and improved medication effectiveness and safety. Integrated with interview data from 30 individuals, 2 implementation themes were identified: individual internalization and organizational features. Individuals needed to internalize, make sense of, and agree to BL TDM implementation, which was positively influenced by repeated exposure to evidence and expertise. The process of internalization appeared more complex with BL TDM than with other antibiotics (ie, vancomycin). Organizational considerations relevant to BL TDM implementation (eg, infrastructure, personnel) were similar to those identified in other TDM settings. CONCLUSIONS: Broad enthusiasm for BL TDM among participants was found. Prior literature suggested that assay availability was the primary barrier to implementation; however, the data revealed many more individual and organizational attributes, which impacted the BL TDM implementation. Internalization should particularly be focused on to improve the adoption of this evidence-based practice.

Who Is Most Burdened in Health Care? An Analysis of Responses to the ICAN Discussion Aid.

OBJECTIVE: To create a model based on patients' characteristics that can predict the number of burdens reported using the ICAN Discussion Aid, to target use of this tool to patients likeliest to benefit. PATIENTS AND METHODS: Six hundred thirty-five patients (aged ≥18 years) completed the ICAN Discussion Aid at a Scottsdale, Arizona, family medicine clinic. Patient characteristics were gathered from their health records. Regression trees with Poisson splitting criteria were used to model the data. RESULTS: Our model suggests the patients with the most burdens had major depressive disorder, with twice as many overall burdens (personal plus health care burdens) than patients without depression. Patients with depression who were younger than 38 years had the highest number of personal burdens. A body mass index (BMI) of 26 or greater was associated with increased health care burden versus a BMI below 26. CONCLUSION: The number of burdens a patient will report on the ICAN Discussion Aid can be approximated based on certain patient characteristics. Adults with major depression, a BMI of 26 or greater, and younger age may have greater reported burdens on ICAN, but this finding needs to be validated in independent samples.

Education for patients with limb loss or absence: Aging, overuse concerns, and patient treatment knowledge gaps.

The goals of vascular composite allotransplantation (VCA) for hand are to maximize functional status and psychosocial wellbeing and to improve quality of life. Candidates are carefully vetted by transplant programs through an extensive evaluation process to exclude those patients with contraindications and to select those that are most likely to attain functional or quality of life benefit from transplant. Patient choice for any treatment, however, requires that candidates be able to understand the risks, benefits, and alternatives before choosing to proceed. This study aimed to understand patients' knowledge and perceptions about treatment options for hand loss, including hand transplant. This study will be used to inform a standardized education approach and develop conversation aids for use by clinicians and patients throughout the treatment decision process. Ten individuals who had experienced hand amputation or had congenital limb loss were interviewed to better understand previous and current decisions about treatment, experiences in adjusting to their treatment, and perceptions about hand VCA. From this qualitative interview data, four findings emerged: (1) knowledge and education around VCA as a treatment option; (2) adaptation of individuals with limb loss; (3) fear of risk associated with transplantation; (4) issues of aging and overuse injuries to existing limbs. Results suggests that there is opportunity for expanding education about all treatment options for patients with new loss, long-term loss, and congenital limb loss. Establishing a baseline of knowledge about all options-prosthetics, rehabilitative strategies, and VCA-can help patients evaluate their values and goals of treatment. Issues associated with aging, including overuse and injury, and adaptability over the life course should be included in considerations about treatment choices. Data indicate the need for routinely assessing patient preferences about treatment choice so patients can plan for their future as they adapt and age and as technology for treatments change. To assure that thorough information is provided for current and future decision-making, education about treatment choices and selection procedures for VCA should be standardized.

Women's values and preferences on low-molecular-weight heparin and pregnancy: a mixed-methods systematic review.

BACKGROUND: Venous thromboembolism (VTE) in pregnancy is an important cause of maternal morbidity and mortality. Low-molecular-weight heparin (LMWH) is the cornerstone of prophylaxis and treatment of thrombotic events during pregnancy. LMWH has fewer adverse effects than other anticoagulants, does not cross the placenta, and is safe for the fetus. However, the use of LMWH during pregnancy is sensitive to womens' underlying preferences. The objective of this review is to systematically assess women's values and preferences research evidence on this topic. METHODS: We searched four electronic databases from inception to March 2022, and included studies examining values and preferences of using LMWH among pregnant women at risk of VTE. We followed a convergent integrated mixed-methods design to compare and contrast quantitative outcomes (utility and non-utility measures) and qualitative findings. We assessed the certainty of the values and preferences evidence with the GRADE approach for quantitative findings, and with GRADE-CERqual for qualitative evidence. Results were presented in a conjoint display. RESULTS: We screened 3,393 references and identified seven eligible studies. The mixed methods analysis resulted in four themes. Datasets confirmed each other in that: 1) the majority of women consider that benefits of treatment outweigh the inconveniences of daily injections; and 2) main concerns around medication are safety and injections administration. Quantitative outcomes expanded on the qualitative findings in that: 3) participants who perceived a higher risk of VTE were more willing to take LMWH. Finally, we found a discrepancy between the datasets around: 4) the amount of information preferred to make the decision; however, qualitative data expanded to clarify that women prefer making informed decisions and receive support from their clinician in their decision-making process. CONCLUSIONS: We are moderately confident that in the context of pregnancy, using LMWH is preferred by women given its net beneficial balance. Integrating data from different sources of evidence, and representing them in a jointly manner helps to identify patient's values and preferences. Our results may inform clinical practice guidelines and support shared decision-making process in the clinical encounter for the management of VTE in the context of pregnancy.

Using team science in vascularized composite allotransplantation to improve team and patient outcomes.

Reconstructive allografts using Vascularized Composite Allotransplantation (VCA) are providing individuals living with upper limb loss and facial disfigurement with new opportunities for a sensate, esthetically acceptable, and functional alternative to current treatment strategies. Important research attention is being paid to how best to assess and screen candidates for VCA, measure optimal patient outcomes, and support patient adherence to lifelong behaviors and medical regimens. Far less attention, however, has been dedicated to the team science required for these complex VCA teams to form, prepare, and provide the highest quality clinical and psychosocial care to those receiving VCA. VCA teams are unique in that they require specialized team members whose scope of practice may not otherwise overlap. The team also needs to constantly negotiate balancing patient safety with multiple risks throughout the transplant process. This study aimed to elucidate the team science needed for this highly innovative and complex area of medicine. Using in-depth qualitative interviews with 14 VCA team members and observations at team meetings, we found that careful consideration of team composition, team structure, and organizational commitment (e.g., local culture and team values; investment of resources) influences team performance and patient outcomes, but that to be efficient and truly effective, teams need to commit to developing processes that foster collaboration. These processes are action-oriented (e.g., communication, leadership), strategic (e.g., planning, training) and interpersonal (e.g., conflict management, trust building). Dedication and commitment to team science allows teams to manage conflict under stress and exercise ways to leverage strengths to provide optimal performance or patient psychosocial and clinical outcomes. This study can provide insight into quality improvement efforts for VCA teams and guidance for other transplant programs that wish to consider expansion into VCA.

ABLE to support patient financial capacity: A qualitative analysis of cost conversations in clinical encounters.

OBJECTIVE: To explore how costs of care are discussed in real clinical encounters and what humanistic elements support them. METHODS: A qualitative thematic analysis of 41 purposively selected transcripts of video-recorded clinical encounters from trials run between 2007 and 2015. Videos were obtained from a corpus of 220 randomly selected videos from 8 practice-based randomized trials and 1 pre-post prospective study comparing care with and without shared decision making (SDM) tools. RESULTS: Our qualitative analysis identified two major themes: the first, Space Needed for Cost Conversations, describes patients' needs regarding their financial capacity. The second, Caring Responses, describes humanistic elements that patients and clinicians can bring to clinical encounters to include good quality cost conversations. CONCLUSION: Our findings suggest that strengthening patient-clinician human connections, focusing on imbalances between patient resources and burdens, and providing space to allow potentially unexpected cost discussions to emerge may best support high quality cost conversations and tailored care plans. PRACTICE IMPLICATIONS: We recommend clinicians consider 4 aspects of communication, represented by the mnemonic ABLE: Ask questions, Be kind and acknowledge emotions, Listen for indirect signals and (discuss with) Every patient. Future research should evaluate the practicality of these recommendations, along with system-level improvements to support implementation of our recommendations.

Interventions for Increasing Digital Equity and Access (IDEA) among rural patients who smoke: Study protocol for a pragmatic randomized pilot trial.

BACKGROUND: Cigarette smoking prevalence is higher among rural compared with urban adults, yet access to cessation programming is reduced. The Increasing Digital Equity and Access (IDEA) study aims to evaluate three digital access and literacy interventions for promoting engagement with an online evidence-based smoking cessation treatment (EBCT) program among rural adults. METHODS: The pilot trial will use a pragmatic, three-arm, randomized, parallel-group design with participants recruited from a Midwest community-based health system in Minnesota, Wisconsin, and Iowa. All participants will receive an online, 12-week, EBCT program, and written materials on digital access resources. Participants will be stratified based on state of residence and randomly assigned with 1:1:1 allocation to one of three study groups: (1) Control Condition-no additional study intervention (n = 30); (2) Loaner Digital Device-Bluetooth enabled iPad with data plan coverage loaned for the study duration (n = 30); (3) Loaner Digital Device + Coaching Support-loaner device plus up to six, 15-20 min motivational interviewing-based coaching calls to enhance participants' digital access and literacy (n = 30). All participants will complete study assessments at baseline and 4- and 12-weeks post-randomization. Outcomes are cessation program and trial engagement, biochemically confirmed smoking abstinence, and patient experience. RESULTS: A rural community advisory committee was formed that fostered co-design of the study protocol for relevance to rural populations, including the trial design and interventions. CONCLUSION: Study findings, processes, and resources may have relevance to other health systems aiming to foster digital inclusion in smoking cessation and chronic disease management programs and clinical trials in rural communities.

Identifying and Managing Treatment Nonadherence.

Nonadherence to medical treatment is exceptionally common and associated with poor clinical outcomes, a negative impact on quality of life, and a large financial burden on health care systems. This article first addresses key contributors to nonadherence from patient-specific, treatment-specific, and health care system-specific factors. Second, it outlines tools for the practicing clinician to identify, evaluate, and manage nonadherence across the spectrum of chronic disease in partnership with patients.

Rural Patient Experiences of Accessing Care for Chronic Conditions: A Systematic Review and Thematic Synthesis of Qualitative Studies.

PURPOSE: Access to health care is a long-standing concern for rural patients; however, administrative measures fail to capture the subjective patient experience of accessing health care. The purpose of this review was to synthesize the qualitative literature on patient and caregiver experiences of accessing health care services for chronic disease management among US residents of rural areas. METHODS: We searched Embase, MEDLINE, PsycInfo, CINAHL, and Scopus to identify qualitative studies published during 2010-2019. A thematic synthesis approach was used to analyze findings from included studies. RESULTS: A total of 62 studies involving 1,354 unique participants were included. The largest share of studies (24.2%) was focused on the experience of patients with cancer, followed by behavioral health (16.1%), HIV and AIDS (14.5%), and diabetes (12.9%). We identified 4 primary analytic themes of barriers and facilitators associated with the experience of accessing health care services for chronic disease management in rural areas: (1) navigating the rural environment, (2) navigating the health care system, (3) financing chronic disease management, and (4) rural life (ie, common elements of a distinct "rural" way of thinking and behaving). CONCLUSIONS: In this comprehensive review, we found that important cultural, structural, and individual factors influenced the rural patient's experience of health care access and use, including barriers and facilitators posed by geographic and built environments, and distinct rural mores. Our findings can inform policies and programs that both facilitate structural aspects of access and include culturally appropriate interventions.VISUAL ABSTRACT.

Older Patients with Advanced Chronic Kidney Disease and Their Perspectives on Prognostic Information: a Qualitative Study.

BACKGROUND: Prognostic information is key to shared decision-making, particularly in life-limiting illness like advanced chronic kidney disease (CKD). OBJECTIVE: To understand the prognostic information preferences expressed by older patients with CKD. DESIGN AND PARTICIPANTS: Qualitative study of 28 consecutively enrolled patients over 65 years of age with non-dialysis dependent CKD stages 3b-5, receiving care in a multi-disciplinary CKD clinic. APPROACH: Semi-structured telephone or in-person interviews to explore patients' preference for and perceived value of individualized prognostic information. Interviews were analyzed using inductive content analysis. KEY RESULTS: We completed interviews with 28 patients (77.7 ± SD 6.8 years, 69% men). Patients varied in their preference for prognostic information and more were interested in their risk of progression to end-stage kidney disease (ESKD) than in life expectancy. Many conflated ESKD risk with risk of death, perceiving a binary choice between dialysis and quick decline and death. Patients expressed that prognostic information would allow them to plan, take care of important business, and think about their treatment options. Patients were accepting of prognostic uncertainty and imagined leveraging it to nurture hope or motivate them to better manage risk factors. They endorsed the desire to receive prognosis of life expectancy even though it may be hard to accept or difficult to talk about but worried it could create helplessness for other patients in their situation. CONCLUSION: Most, but not all, patients were interested in prognostic information and could see its value in motivating behavior change and allowing planning. Some patients expressed concern that information on life expectancy might cause depression and hopelessness. Therefore, prognostic information is most appropriate as part of a clinical conversation that fosters shared decision-making and helps patients consider treatment risks, benefits, and burdens in context of their lives.