Measuring Quality-weighted Hospital-Free-Days in Acute Respiratory Failure: A Modified Delphi Study.

RATIONALE: Hospital-free days (HFDs), a measure of the number of days alive spent outside the hospital, is increasingly used as an endpoint in studies of patients with acute respiratory failure (ARF) or other critical and serious illnesses. Current approaches to measuring HFDs do not account for decrements in functional status or quality of life that ARF survivors and family members value. OBJECTIVES: To develop an acceptable approach to measure quality-weighted HFDs using patient-reported outcomes. METHODS: We conducted a 4-round modified Delphi among ARF experts - those with lived or professional experience. Experts rated survivorship domains, instrument and data collection characteristics, and methods to translate responses into quality-weighted HFDs. The consensus threshold was that >70% of respondents rated an item "Totally Acceptable" or "Acceptable" and <15% of respondents rated the item "Totally Unacceptable", "Unacceptable", or "Slightly Unacceptable." RESULTS: Fifty-seven experts participated in Round 1. Response rates were 82-93% for subsequent rounds. Priority survivorship domains were physical function and health-related quality of life. Participants reached consensus that data collection during ARF recovery should take fewer than 15 minutes per assessment, allow for surrogate completion when patients are unable, and continue for at least 24 months of follow-up. Using the EuroQol-5 Dimensions (EQ-5D) to quality-weight HFDs met consensus criteria for acceptability. A majority of panelists preferred quality-weighted HFDs to unweighted HFDs or survival for use in future ARF studies. CONCLUSIONS: Quality-weighting HFDs using patient and/or surrogate responses to the EQ-5D captured stakeholder priorities and was acceptable to this Delphi panel.

Survival analysis under imperfect record linkage using historic census data.

BACKGROUND: Advancements in linking publicly available census records with vital and administrative records have enabled novel investigations in epidemiology and social history. However, in the absence of unique identifiers, the linkage of the records may be uncertain or only be successful for a subset of the census cohort, resulting in missing data. For survival analysis, differential ascertainment of event times can impact inference on risk associations and median survival. METHODS: We modify some existing approaches that are commonly used to handle missing survival times to accommodate this imperfect linkage situation including complete case analysis, censoring, weighting, and several multiple imputation methods. We then conduct simulation studies to compare the performance of the proposed approaches in estimating the associations of a risk factor or exposure in terms of hazard ratio (HR) and median survival times in the presence of missing survival times. The effects of different missing data mechanisms and exposure-survival associations on their performance are also explored. The approaches are applied to a historic cohort of residents in Ambler, PA, established using the 1930 US census, from which only 2,440 out of 4,514 individuals (54%) had death records retrievable from publicly available data sources and death certificates. Using this cohort, we examine the effects of occupational and paraoccupational asbestos exposure on survival and disparities in mortality by race and gender. RESULTS: We show that imputation based on conditional survival results in less bias and greater efficiency relative to a complete case analysis when estimating log-hazard ratios and median survival times. When the approaches are applied to the Ambler cohort, we find a significant association between occupational exposure and mortality, particularly among black individuals and males, but not between paraoccupational exposure and mortality. DISCUSSION: This investigation illustrates the strengths and weaknesses of different imputation methods for missing survival times due to imperfect linkage of the administrative or registry data. The performance of the methods may depend on the missingness process as well as the parameter being estimated and models of interest, and such factors should be considered when choosing the methods to address the missing event times.

Identifying Core Outcome Domains in Chronic Skin Disease Using the Best-Worst Scaling Method.

Importance: The use of patient-reported outcome measures (PROMs) potentially holds promise as an opportunity to improve outcomes and quality of care for patients with skin disease, but the routine use of PROMs remains limited. While the Patient-Reported Outcomes Measurement Information System (PROMIS) has several strengths and domains relevant to those with chronic skin disease, it is not clear which are most useful. Objective: To determine which PROMIS domains are most meaningful to those with chronic skin disease to develop a PROMIS profile that effectively captures the experience of living with these skin diseases. Design, Setting, and Participants: This cross-sectional study was based on data gathered from an internet survey that was administered to a sample of adult respondents in the US on the Prolific Platform and ResearchMatch and through the National Psoriasis Foundation. A list of PROMIS domains relevant to chronic skin disease was developed through literature review. These domains were included in a best-worst scaling exercise, in which participants were shown 12 sets of 4 domains and asked to choose which domain in each set was the most important and least important to their experience. Participants completed the survey between December 2022 and June 2023. Data were analyzed in June 2023. Main Outcomes and Measures: Ratio-scaled preference score for each of the domains. Results: Of 939 total participants, 559 (59.5%) were female, 20 (2.1%) gender nonconforming, 7 (0.7%) transgender men, and 1 (0.1%) transgender women; there were 4 American Indian/Alaska Native (0.4%), 50 Asian (5.3%), 63 Black (6.7%), 66 Hispanic or Latino/a/x (7.0%), 2 Native Hawaiian/Pacific Islander (0.2%), 749 White (79.8%), and 42 multiracial individuals (4.5%). The survey was completed by 200 participants with acne, 316 with psoriasis, 199 with atopic dermatitis, and 224 with various chronic skin diseases. For those with acne, the highest-scored domains were body image (15.66), appearance (14.96), life satisfaction (11.29), depression (9.25), and anxiety (9.18). For those with psoriasis, the highest-scored domains were life satisfaction (11.31), appearance (11.05), itch (10.98), pain (9.97), and body image (8.75). For those with atopic dermatitis, the highest-scored domains were itch (12.60), life satisfaction (11.65), appearance (11.40), body image (11.25), and pain (10.03). Conclusion and Relevance: The results of this study suggest that body image, appearance, life satisfaction, itch, pain, anxiety, and depression were highly rated across the surveys. By identifying the PROMIS domains most important to individuals with chronic skin disease, clinicians can choose the domains that are most relevant to patients. In addition, this may guide the construction of a PROMIS profile that effectively captures the experience of living with these skin diseases and can serve as a patient-reported measure of disease severity and treatment effectiveness.

Transplant recipient, care partner, and clinician perceptions of medication adherence monitoring technology: A mixed methods study.

Medication nonadherence is a leading cause of graft loss. Adherence monitoring technologies-reminder texts, smart bottles, video-observed ingestion, and digestion-activated signaling pills-may support adherence. However, patient, care partner, and clinician perceptions of these tools are not well studied. We conducted qualitative individual semistructured interviews and focus groups among 97 participants at a single center: kidney and liver transplant recipients 2 weeks to 18 months posttransplant, their care partners, and transplant clinicians. We assessed adherence practices, reactions to monitoring technologies, and opportunities for care integration. One-size-fits-all approaches were deemed infeasible. Interviewees considered text messages the most acceptable approach; live video checks were the least acceptable and raised the most concerns for inconvenience and invasiveness. Digestion-activated signaling technology produced both excitement and apprehension. Patients and care partners generally aligned in perceptions of adherence monitoring integration into clinical care. Key themes were importance of routine, ease of use, leveraging technology for actionable medication changes, and aversion to surveillance. Transplant clinicians similarly considered text messages most acceptable and video checks least acceptable. Clinicians reported that early posttransplant use and real-time adherence tracking with patient feedback may facilitate successful implementation. The study provides initial insights that may inform future adherence technology implementation.

Participant experiences in HIV cure-directed trial with an extended analytical treatment interruption in Philadelphia, United States.

BACKGROUND: A feature of HIV cure trials is the need to interrupt treatment to test the efficacy of experimental interventions-a process known as analytical treatment interruptions (ATIs). OBJECTIVES: We report the experiences of participants after they completed an extended ATI. METHODS: From April to November 2022, we conducted post-ATI in-depth interviews with BEAT2 clinical trial (NCT03588715) participants who stopped ART while receiving an immunotherapy regimen. We used conventional content analysis to code the data. RESULTS: We conducted interviews with 11 Black/African American and three White/Caucasian participants (11 males, two females, and one transgender woman). The mean ATI was 38 weeks. Participants noted several significant experiences surrounding the interventions' side effects, ATI, and returning to medication. Some participants had positive experiences with their ATI. Other participants were nervous during the ATI. Rising viral loads led some to feel a sense of failure. Although trial experiences were heterogeneous, participants unanimously had positive interactions with the clinical trial staff which facilitated their retention in the trial. Participants shared their experiences with the trial, including changes in expectations, experiences with experimental interventions and procedures, compensation as a measure of respect, effort, transportation, and effects of COVID-19 during the trial. Based on these results, we provide considerations for the conduct of future HIV cure-directed clinical trials involving ATIs. CONCLUSIONS: Managing expectations, focusing on participants' contributions, and providing support to reduce feelings of having failed the research team and/or the HIV community following viral rebound should be part of HIV cure trial design. Discussing the mental health impact of rebound during consent, distinct from risk, is needed. Continued efforts to understand how people with HIV experience ATIs will improve future designs of HIV cure clinical trials.

Engaging Stakeholders to Improve Care for Adults with Complex Health and Social Needs during a Public Health Emergency.

A public health emergency such as the COVID-19 pandemic exacerbates the already challenging environment facing adults with complex health and social needs (ACHSN) and the systems of care that support them. Between September 2020 and April 2021, 51 participants representing six different stakeholder groups were engaged using interviews, asynchronous Delphi surveys, and a virtual stakeholder meeting to learn from their perspectives about the greatest needs and possible solutions affecting ACHSN populations during the COVID-19 pandemic and to develop a prioritized research agenda to improve care for ACHSN populations. Mental health and financial concerns were strongly and consistently endorsed as the most important issues. Future research priorities identified included both macro systems research such as testing alternative state-level models of payment for physical and mental health care and research that could be conducted at a local level (such as identifying needs for patient care navigation services and testing models of care navigation).

Stigma and Social Determinants of Health Associated With Fidelity to Guideline-Concordant Therapy in Patients With Breast Cancer Living With and Without HIV in Botswana.

BACKGROUND: Patients with breast cancer in sub-Saharan Africa (SSA) experience a disproportionate burden of mortality. Fidelity to treatment guidelines, defined as receiving optimal dose and frequency of prescribed treatments, improves survival. We sought to identify patient factors associated with treatment fidelity and how this may differ for people with HIV (PWH) and breast cancer. METHODS: We conducted a qualitative study of women who initiated outpatient treatment for stages I-III breast cancer in Botswana, with deviance sampling of high- and low-fidelity patients. One-on-one interviews were conducted using semi-structured guides informed by the Theory of Planned Behavior. The sample size was determined by thematic saturation. Transcribed interviews were double coded with an integrated analytic approach. RESULTS: We enrolled 15 high- and 15 low-fidelity participants from August 25, 2020 to December 15, 2020, including 10 PWH (4 high, 6 low fidelity). Ninety-three percent had stage III disease. Barriers to treatment fidelity included stigma, social determinants of health (SDOH), and health system barriers. Acceptance and de-stigmatization, peer and other social support, increased knowledge and self-efficacy were identified as facilitators. The COVID-19 pandemic amplified existing socioeconomic stressors. Unique barriers and facilitators identified by PWH included intersectional stigma, and HIV and cancer care integration, respectively. CONCLUSION: We identified multilevel modifiable patient and health system factors associated with fidelity. The facilitators provide opportunities for leveraging existing strengths within the Botswana context to design implementation strategies to increase treatment fidelity to guideline-concordant breast cancer therapy. However, PWH experienced unique barriers, suggesting that interventions to address fidelity may need to be tailored to specific comorbidities.

Using poetry to elicit internal medicine residents' perspectives on wellness.

PURPOSE: To elicit internal medicine residents' perspectives on wellness through poetry writing, examining (1) response rates, (2) the tone/sentiment of their submissions and (3) the primary thematic content. STUDY DESIGN: In academic year 2019-2020, a random sample of 88 residents from four internal medicine residency programmes was invited to participate in a year-long study of wellness. In December 2019, an open-ended prompt asked residents to write a poem reflecting on their well-being. Responses were inductively coded using content analysis techniques. RESULTS: The response rate for the poetry prompt was 94%. The tone of the entries was most often neutral or contradictory (42%), followed by negative (33%) and positive (25%). There were three main themes: (1) Mindsets: most residents simply wanted to make it through their programme; (2) wellness influencers: the main wellness supporters were external to the programme such as vacationing and exercise; within hospitals, friendships with colleagues and boosted wellness and (3) scheduling/repetition: difficult schedules drained energy as did the monotony of administrative tasks. CONCLUSIONS: Poetry appears to be an innovative and effective vehicle to elicit residents' perspectives without compromising response rate. Poetry survey techniques allow medical trainees to provide powerful messaging to leadership. Most of what is known about trainee wellness is derived from quantitative surveys. This study showed medicine trainees' willingness to engage in poetry and add richness and personal detail to highlight key drivers of wellness. Such information provides context and brings attention in a compelling manner to an important topic.

Patient- and Team-Level Characteristics Associated with Handoff Protocol Fidelity in a Hybrid Implementation Study: Results from a Qualitative Comparative Analysis.

BACKGROUND: Standardization is an evidence-based approach to improve handoffs. The factors underpinning fidelity (that is, adherence) to standardized handoff protocols are not well specified, which hampers implementation and sustainability efforts. METHODS: The Handoffs and Transitions in Critical Care (HATRICC) study (2014-2017) involved the creation and implementation of a standardized protocol for operating room (OR)-to-ICU handoffs in two mixed surgical ICUs. The present study used fuzzy-set qualitative comparative analysis (fsQCA) to characterize combinations of conditions associated with fidelity to the HATRICC protocol. Conditions were derived from postintervention handoff observations yielding quantitative and qualitative data. RESULTS: Sixty handoffs had complete fidelity data. Four conditions from the SEIPS 2.0 model were used to explain fidelity: (1) whether the patient was newly admitted to the ICU; (2) presence of an ICU provider; (3) observer ratings of attention-paying by the handoff team; and (4) whether the handoff took place in a quiet environment. None of the conditions were singly necessary or sufficient for high fidelity. Three combinations of conditions were sufficient for fidelity: (1) presence of the ICU provider and high attention ratings; (2) a newly admitted patient, presence of the ICU provider, and quiet environment; and (3) a newly admitted patient, high attention ratings, and quiet environment. These three combinations explained 93.5% of the cases demonstrating high fidelity. CONCLUSION: In a study of OR-to-ICU handoff standardization, multiple combinations of contextual factors were associated with handoff protocol fidelity. Handoff implementation efforts should consider multiple fidelity-promoting strategies that support these combinations of conditions.

Caregiver experiences helping children with Down syndrome use positive airway pressure to treat obstructive sleep apnea.

BACKGROUND/OBJECTIVE: While positive airway pressure (PAP) is an efficacious intervention for the treatment of obstructive sleep apnea syndrome (OSAS) in children with Down syndrome (DS), implementation and consistent use can be difficult. Caregiver perspectives and experiences using PAP are described with the aim of informing clinical practice. METHODS: Qualitative semi-structured phone interviews were conducted with 40 caregivers (i.e., mothers) of children with DS and OSAS treated with PAP for at least 6 months. Content analysis was used to identify themes associated with adherence and non-adherence. RESULTS: Respondents indicated variability in caregiver experience with the adoption of PAP and observed benefits of PAP. Varied experiences were attributed to several themes including accessing supplies, interactions with the medical team and equipment company, and patients' unique needs and behaviors, including the child's willingness and ability to adapt to PAP, sensory sensitivities, keeping the mask on all night, and differences in daytime behavior. Many families reported that desensitization with a reward system and trust within the caregiver-patient relationship were helpful. Caregiver suggestions for improving PAP adherence for families of children with DS included improving communication with the medical team and medical equipment company, emphasizing patience, using visual supports, and social support and education for extended family. CONCLUSIONS: Although family experiences varied, several actionable strategies by both the medical team and families emerged for improving the experience of and adherence to PAP in children with DS.

Factors Associated With Primary Care Physician Decision-making When Making Medication Recommendations vs Surgical Referrals.

Importance: Although objective data are used routinely in prescription drug recommendations, it is unclear how referring physicians apply evidence when making surgeon or hospital recommendations for surgery. Objective: To compare the factors associated with the hospital or surgeon referral decision-making process with that used for prescription medication recommendations. Design, Setting, and Participants: This qualitative study comprised interviews conducted between April 26 and May 18, 2021, of a purposive sample of 21 primary care physicians from a large primary care network in the Northeast US. Main Outcomes and Measures: Main outcomes were the factors considered when making prescription medication recommendations vs referral recommendations to specific surgeons or hospitals for surgery. Results: All 21 participant primary care physicians (14 women [66.7%]) reported use of evidence-based decision support tools and patient attributes for prescription medication recommendations. In contrast, for surgeon and hospital referral recommendations, primary care physicians relied on professional experience and training, personal beliefs about surgical quality, and perceived convenience. Primary care physicians cited perceived limitations of existing data on surgical quality as a barrier to the use of such data in the process of making surgical referrals. Conclusions and Relevance: As opposed to the widespread use of objective decision support tools for guidance on medication recommendations, primary care physicians relied on subjective factors when making referrals to specific surgeons and hospitals. The findings of this study highlight the potential to improve surgical outcomes by introducing accessible, reliable data as an imperative step in the surgical referral process.

Impact of Stigma on Clinician Training for Opioid Use Disorder Care: A Qualitative Study in a Primary Care Learning Collaborative.

PURPOSE: We undertook a study to examine how stigma influences the uptake of training on medication for opioid use disorder (MOUD) in primary care academic programs. METHODS: We conducted a qualitative study of 23 key stakeholders responsible for implementing MOUD training in their academic primary care training programs that were participants in a learning collaborative in 2018. We assessed barriers to and facilitators of successful program implementation and used an integrated approach to develop a codebook and analyze the data. RESULTS: Participants represented the family medicine, internal medicine, and physician assistant fields, and they included trainees. Most participants described clinician and institutional attitudes, misperceptions, and biases that enabled or hindered MOUD training. Perceptions included concerns that patients with OUD are "manipulative" or "drug seeking." Elements of stigma in the origin domain (ie, beliefs by primary care clinicians or the community that OUD is a choice and not a disease), the enacted domain (eg, hospital bylaws banning MOUD and clinicians declining to obtain an X-Waiver to prescribe MOUD), and the intersectional domain (eg, inadequate attention to patient needs) were perceived as major barriers to MOUD training by most respondents. Participants described strategies that improved the uptake of training, including giving attention to clinician concerns, clarifying the biology of OUD, and ameliorating clinician fears of being ill equipped to provide care for patients. CONCLUSIONS: OUD-related stigma was commonly reported in training programs and impeded the uptake of MOUD training. Potential strategies to address stigma in the training context, beyond providing content on effective evidence-based treatments, include addressing the concerns of primary care clinicians and incorporating the chronic care framework into OUD treatment.

"I Know That I Was a Part of Making a Difference": Participant Motivations for Joining a Cure-Directed HIV Trial with an Analytical Treatment Interruption.

Analytical treatment interruption (ATI), defined as a closely monitored clinical pause in antiretroviral therapy (ART), is a core component of many HIV cure-directed clinical studies. ATIs may cause significant physical and psychosocial risks for people living with HIV and, as a result, integrating participant and community perspectives into clinical trial designs that include an ATI is crucial to ensuring a successful and person-centered trial. We conducted semi-structured interviews with participants enrolling in the BEAT-2 cure-directed trial (NCT03588715). Interviews elicited participant motivations and decision-making processes for trial participation along with participants' perceptions of the ATI. Interviews were recorded, transcribed, and analyzed using a directed content analysis. Fourteen of 15 trial participants completed interviews. The majority were Black (79%) cisgender male (79%). Participants noted several significant motivating factors contributing to their desire to enroll in the HIV cure-directed clinical trial, the most prominent being a desire to find a cure for HIV and help others in the HIV community. HIV care teams were the most commonly identified resource for patients when making the decision to enroll in the trial, and family, friends, and romantic partners also played a significant role. Altruism was a primary motivation for participation, although participants also shared interest in learning about HIV science and research. Participants had a strong understanding of trial procedures and displayed significant trust in the study team to keep them informed and healthy during their participation. The ATI was a significant source of anxiety for participants. Their primary worry was that their prior antiretroviral therapy (ART) regimen would no longer be effective once they resumed ART. Despite these concerns, participants shared considerable excitement for continued participation in the trial and being a part of the search toward an HIV cure.

Developing effective health coaches: Experience gained in a clinical trial of a health coach intervention.

OBJECTIVE: To identify the characteristics of an effective health coach and describe how these characteristics can be developed. METHODS: A qualitative descriptive design was used to obtain insights from a convenience, homogenous sample of health coaches, social workers, and research staff members collaborating as members of a team providing a health coaching telehealth intervention for lay caregivers. Individual interviews were analyzed using thematic analysis. RESULTS: The 11 study participants interviewed were predominately married (75 %), female (92 %) and Caucasian (83 %). Ages ranged from 27 to 66 with an average age of 42 years. The sample was highly educated, with five having attained a terminal degree (PhD or DNP). The participants described three themes of characteristics that contributed to the success of health coaches: personal characteristics, professional characteristics, and program characteristics. CONCLUSIONS: These characteristics expand what is known about attributes that contribute to successful health coaching. Most can be trained or used in developing programs and interventions. PRACTICE IMPLICATIONS: Our findings suggest that many of the core skills of an effective health coach can be developed through individual training, program design, and peer support. Innate personal characteristics such as trustworthiness, integrity, and compassion are hard to influence but can be identified in the hiring process.

A mixed methods study on factors that promote and ameliorate burnout in academic dermatologists.

The burnout literature is replete with burnout score results from quantitative surveys. There is a paucity of qualitative research that seeks to understand the impact of physician stressors on work-life balance and burnout. This study aimed to identify factors that support and disrupt work-life balance, drivers of burnout, and potential solutions among academic dermatologists. The objective was to better understand factors that promote wellness and ameliorate burnout. Concurrent explanatory mixed methods consisted of scores on the Abbreviated Maslach Burnout Inventory and open-ended semi-structured telephone interviews. The results were that positive factors, such as supportive home life and satisfaction derived from academic endeavors, compete with ongoing feelings of exhaustion, frustration, and apathy. Negative stressors include the electronic medical record, insufficient staffing, administrative and clinical task burden, and perceived lack of interest from mid-level and senior health system leadership in addressing clinicians' needs. This was a single-center academic study. As with all qualitative studies, these results may not be generalizable to all dermatologists. In addition, some participants were concerned about their anonymity. Modifiable root causes of burnout require institutional commitment to sustain the pace required by academic dermatologists.

Participants' Perspectives on Payment for Research Participation: A Qualitative Study.

Investigators commonly offer payments to research participants to promote recruitment and retention. Yet the ethics of offering monetary incentives to research participants continues to be debated. Prior conceptual work has addressed some of these concerns; there is, however, also a need for empirical evidence to understand the effects of payment on participants. Here, we report the results of a qualitative study comprising (1) discourse analysis of recruitment conversations between study coordinators and potential participants for an actual clinical trial and (2) semistructured interviews with participants addressing the effects of an incentive on their decision-making. Many participants reported that money had been a motivation for enrolling in the clinical trial but did not use reasoning that suggested undue influence or unjust inducement. These findings add to a growing body of literature suggesting that payment is an ethically acceptable tool for promoting recruitment and retention in clinical trials.

A Qualitative Study of Resident Experiences With Clinical Event Debriefing.

OBJECTIVES: The facilitated discussion of events through clinical event debriefing (CED) can promote learning and wellbeing, but resident involvement is often limited. Although the graduate medical education field supports CED, interventions to promote resident involvement are limited by poor insight into how residents experience CED. The objective of this study was to characterize pediatric resident experiences with CED, with a specific focus on practice barriers and facilitators. METHODS: We conducted this qualitative study between November and December 2020 at a large, free-standing children's hospital. We recruited pediatric residents from postgraduate years 1 to 4 to participate in virtual focus groups. Focus groups were digitally recorded, deidentified, and transcribed. Transcripts were entered into coding software for analysis. We analyzed the data using a modified grounded theory approach to identify major themes. RESULTS: We conducted 4 mixed-level focus groups with 26 residents. Our analysis identified multiple barriers and facilitators of resident involvement in CED. Several barriers were logistical in nature, but the most salient barriers were derived from unique features of the resident role. For example, residents described the transience of their role as a barrier to both participating and engaging in CED. However, they described advancing professional experience and the desire for reflective learning as facilitators. CONCLUSIONS: Residents in this study highlighted many factors affecting their participation and engagement in CED, including barriers related to the unique features of their role. On the basis of resident experiences, we propose several recommendations for CED practice that graduate medical education programs and hospitals should consider for supporting resident involvement in CED.

Developing a Research Agenda for Adults with Complex Health and Social Needs.

This work presents a research agenda addressing the needs of adults with complex health and social needs (ACHSN) formulated through an engagement process fostering cross-stakeholder group communication, shared understanding of identified issues, and mutual commitment to improving care for ACHSN. Nominal group technique and stakeholder interviews were used to develop prioritized stakeholder consensus regarding health issues, barriers, and solutions affecting ACHSN. The engagement process culminated in two stakeholder meetings with all stakeholders to review, process, and develop a shared understanding of the findings. Issues prioritized for future research included the conditions of mental health, diabetes, and addiction; and interventions addressing the barriers of comorbidities, support for mental health, and cost of care/logistics. Notable areas of alignment and variance existed across stakeholder perspectives. Emphasized themes especially relevant to future research included the importance of grounding interventions in multi-stakeholder shared understanding and active inclusion of the patient voice.

Decision-making Among Hepatitis C Virus-negative Transplant Candidates Offered Organs from Donors with HCV Infection.

Background: Historically, many organs from deceased donors with hepatitis C virus (HCV) were discarded. The advent of highly curative direct-acting antiviral (DAA) therapies motivated transplant centers to conduct trials of transplanting HCV-viremic organs (nucleic acid amplification test positive) into HCV-negative recipients, followed by DAA treatment. However, the factors that influence candidates' decisions regarding acceptance of transplant with HCV-viremic organs are not well understood. Methods: To explore patient-level perceptions, influences, and experiences that inform candidate decision-making regarding transplant with organs from HCV-viremic donors, we conducted a qualitative semistructured interview study embedded within 3 clinical trials investigating the safety and efficacy of transplanting lungs and kidneys from HCV-viremic donors into HCV-negative recipients. The study was conducted from June 2019 to March 2021. Results: Among 44 HCV-negative patients listed for organ transplant who were approached for enrollment in the applicable clinical trial, 3 approaches to decision-making emerged: positivist, risk analyses, and instinctual response. Perceptions of risk contributed to conceptualizations of factors influencing decisions. Moreover, most participants relied on multiple decision-making approaches, either simultaneously or sequentially. Conclusions: Understanding how different decisional models influence patients' choices regarding transplant with organs from HCV-viremic donors may promote shared decision-making among transplant patients and providers.