The origins of unpredictability in life outcome prediction tasks.

Why are some life outcomes difficult to predict? We investigated this question through in-depth qualitative interviews with 40 families sampled from a multidecade longitudinal study. Our sampling and interviewing process was informed by the earlier efforts of hundreds of researchers to predict life outcomes for participants in this study. The qualitative evidence we uncovered in these interviews combined with a mathematical decomposition of prediction error led us to create a conceptual framework. Our specific evidence and our more general framework suggest that unpredictability should be expected in many life outcome prediction tasks, even in the presence of complex algorithms and large datasets. Our work provides a foundation for future empirical and theoretical work on unpredictability in human lives.

Challenges in implementation of molecular classification in early stage endometrial cancer-An NRG Oncology cooperative group mixed-methods study.

BACKGROUND: Professional guidelines recommend molecular profiling for mismatch repair (MMR), p53, and polymerase epsilon (POLE) status in endometrial cancer (EC). However, adoption in the United States has not been documented, and barriers to the implementation of testing have not been described. METHODS: In this mixed-methods study, implementation science frameworks were used to develop a quantitative survey. Gynecologic oncologists, medical oncologists, radiation oncologists, and pathologists affiliated with NRG Oncology programs were contacted through snowball sampling and were surveyed during 2022-2023. A subset of respondents was interviewed. Statistical and thematic analyses were performed. RESULTS: At least 403 NRG Oncology-affiliated providers were contacted for the survey, and 107 (26.6%) responded. Greater than 90% of respondents perceived POLE, MMR, and p53 status as important for clinical care. MMR and p53 tests were perceived as easy to obtain, but only 24.2% of respondents reported that POLE testing was moderately or very easy to obtain. Respondents from academic sites reported better access to molecular classification and perceived greater importance of molecular classification compared with respondents from community sites. In thematic analysis of 13 qualitative interviews, cost concerns were reported as large barriers to testing. Interviewees reported a desire for prospective data to guide treatment selection based on classification results. CONCLUSIONS: Although integrating molecular classification into standard pathologic reporting is recommended, and clinicians perceive molecular profiling in early stage EC as important, survey respondents noted significant implementation barriers. Implementation challenges that differ between community oncology and academic practice settings were identified. Strategies to improve equitable access to molecular classification of early stage EC are needed.

A framework for building comprehensive cancer center's capacity for bidirectional engagement.

PURPOSE: Community engagement has benefits for cancer centers' work and for its researchers. This study examined the experiences and perceptions of community engagement by members of the Case Comprehensive Cancer Center (Case CCC) to create and implement a framework to meet the needs of the entire cancer center. METHODS: This study included three phases: 1) Semi-structured interviews with 12 researchers from a basic science program to identify needs and suggestions for the support of community engagement; 2) Preliminary interview results informed the development of a survey of 86 cancer center members' about their awareness of and readiness to integrate community outreach and engagement into their research; and 3) The Case CCC Office of Community Outreach and Engagement reviewed the results from phases 1 and 2 to develop and then utilize a framework of engagement opportunities. RESULTS: In the interviews and surveys, cancer center members recognized the importance of community engagement and expressed an interest in participating in COE-organized opportunities for bidirectional engagement. While participation barriers include communication issues, limited awareness of opportunities, and competing priorities, members were open to learning new skills, changing approaches, and utilizing services to facilitate engagement. The framework outlines engagement opportunities ranging from high touch, low reach to low touch, and high reach and was used to develop specific services. CONCLUSION: This study identified varying needs around community engagement using an approach aimed at understanding the perspectives of a community of scientists. Implementing the framework enables reaching scientists in different ways and facilitates scientists' recognition of and engagement with opportunities.

Qualitative Analysis of Patient Experiences Reaching Urethroplasty for Recurrent Urethral Stricture Disease.

PURPOSE: Despite the inferior outcomes, urethral stricture patients often undergo multiple endoscopic procedures prior to undergoing definitive urethroplasty. We sought to qualitatively evaluate the patient experience of obtaining urethroplasty to better understand the impact of this experience on quality of life. MATERIALS AND METHODS: Patients treated with urethroplasty between September 2019 and July 2021 were identified and invited to participate in our study if they had undergone ≥ 2 endoscopic procedures prior to urethroplasty. Semistructured telephone interviews were conducted, coded, and analyzed using an iterative inductive-deductive approach. RESULTS: Of the 105 urethroplasty patients during the study period, 50 (47.6%) had undergone ≥ 2 endoscopic procedures prior (IQR 3-5), of whom 20 participated in the study. Qualitative themes related to repeat endoscopic procedures included unmet treatment expectations, dissatisfaction with catheterization and repeat procedures, and negative impacts of recurrent stricture symptoms and treatments on quality of life. External factors associated with a delay to urethroplasty included financial constraints, surgeon access, and time off work. CONCLUSIONS: A trajectory of declining quality of life and unmet treatment expectations are the primary factors driving the decision to proceed with urethroplasty. However, external factors such as recovery costs and access to specialists play important roles in delaying surgery. These findings illustrate the need for improved community provider education and patient counseling to better inform expectations of both patients and providers with various treatment outcomes. Furthermore, these data highlight the need to improve access to specialized care for urethral stricture patients.

The first AI-based Chatbot to promote HIV self-management: A mixed methods usability study.

BACKGROUND: We developed MARVIN, an artificial intelligence (AI)-based chatbot that provides 24/7 expert-validated information on self-management-related topics for people with HIV. This study assessed (1) the feasibility of using MARVIN, (2) its usability and acceptability, and (3) four usability subconstructs (perceived ease of use, perceived usefulness, attitude towards use, and behavioural intention to use). METHODS: In a mixed-methods study conducted at the McGill University Health Centre, enrolled participants were asked to have 20 conversations within 3 weeks with MARVIN on predetermined topics and to complete a usability questionnaire. Feasibility, usability, acceptability, and usability subconstructs were examined against predetermined success thresholds. Qualitatively, randomly selected participants were invited to semi-structured focus groups/interviews to discuss their experiences with MARVIN. Barriers and facilitators were identified according to the four usability subconstructs. RESULTS: From March 2021 to April 2022, 28 participants were surveyed after a 3-week testing period, and nine were interviewed. Study retention was 70% (28/40). Mean usability exceeded the threshold (69.9/68), whereas mean acceptability was very close to target (23.8/24). Ratings of attitude towards MARVIN's use were positive (+14%), with the remaining subconstructs exceeding the target (5/7). Facilitators included MARVIN's reliable and useful real-time information support, its easy accessibility, provision of convivial conversations, confidentiality, and perception as being emotionally safe. However, MARVIN's limited comprehension and the use of Facebook as an implementation platform were identified as barriers, along with the need for more conversation topics and new features (e.g., memorization). CONCLUSIONS: The study demonstrated MARVIN's global usability. Our findings show its potential for HIV self-management and provide direction for further development.

Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

Identifying Major Barriers to Home Dialysis (The IM-HOME Study): Findings From a National Survey of Patients, Care Partners, and Providers.

RATIONALE & OBJECTIVE: Developing strategies to improve home dialysis use requires a comprehensive understanding of barriers. We sought to identify the most important barriers to home dialysis use from the perspective of patients, care partners, and providers. STUDY DESIGN: This is a convergent parallel mixed-methods study. SETTING & PARTICIPANTS: We convened a 7-member advisory board of patients, care partners, and providers who collectively developed lists of major patient/care partner-perceived barriers and provider-perceived barriers to home dialysis. We used these lists to develop a survey that was distributed to patients, care partners, and providers-through the American Association of Kidney Patients and the National Kidney Foundation. The surveys asked participants to (1) rank their top 3 major barriers (quantitative) and (2) describe barriers to home dialysis (qualitative). ANALYTICAL APPROACH: We compiled a list of the top 3 patient/care partner-perceived and top 3 provider-perceived barriers (quantitative). We also conducted a directed content analysis of open-ended survey responses (qualitative). RESULTS: There were 522 complete responses (233 providers; 289 patients/care partners). The top 3 patient/care partner-perceived barriers were fear of performing home dialysis; lack of space; and the need for home-based support. The top 3 provider-perceived barriers were poor patient education; limited mechanisms for home-based support staff, mental health, and education; and lack of experienced staff. We identified 9 themes through qualitative analysis: limited education; financial disincentives; limited resources; high burden of care; built environment/structure of care delivery that favors in-center hemodialysis; fear and isolation; perceptions of inequities in access to home dialysis; provider perspectives about patients; and patient/provider resiliency. LIMITATIONS: This was an online survey that is subject to nonresponse bias. CONCLUSIONS: The top 3 barriers to home dialysis for patient/care partners and providers incompletely overlap, suggesting the need for diverse strategies that simultaneously address patient-perceived barriers at home and provider-perceived barriers in the clinic. PLAIN-LANGUAGE SUMMARY: There are many barriers to home dialysis use in the United States. However, we know little about which barriers are the most important to patients and clinicians. This makes it challenging to develop strategies to increase home dialysis use. In this study, we surveyed patients, care partners, and clinicians across the country to identify the most important barriers to home dialysis, namely (1) patients/care partners identified fear of home dialysis, lack of space, and lack of home-based support; and (2) clinicians identified poor patient education, limited support for staff and patients, and lack of experienced staff. These findings suggest that patients and clinicians perceive different barriers and that both sets of barriers should be addressed to expand home dialysis use.

Patterns of Care Following a Positive Fecal Blood Test for Colorectal Cancer: A Mixed Methods Study.

BACKGROUND/OBJECTIVE: Multilevel barriers to colonoscopy after a positive fecal blood test for colorectal cancer (CRC) are well-documented. A less-explored barrier to appropriate follow-up is repeat fecal testing after a positive test. We investigated this phenomenon using mixed methods. DESIGN: This sequential mixed methods study included quantitative data from a large cohort of patients 50-89 years from four healthcare systems with a positive fecal test 2010-2018 and qualitative data from interviews with physicians and patients. MAIN MEASURES: Logistic regression was used to evaluate whether repeat testing was associated with failure to complete subsequent colonoscopy and to identify factors associated with repeat testing. Interviews were coded and analyzed to explore reasons for repeat testing. KEY RESULTS: A total of 316,443 patients had a positive fecal test. Within 1 year, 76.3% received a colonoscopy without repeat fecal testing, 3% repeated testing and then received a colonoscopy, 4.4% repeated testing without colonoscopy, and 16.3% did nothing. Among repeat testers (7.4% of total cohort, N = 23,312), 59% did not receive a colonoscopy within 1 year. In adjusted models, those with an initial positive test followed by a negative second test were significantly less likely to receive colonoscopy than those with two successive positive tests (OR 0.37, 95% CI 0.35-0.40). Older age (65-75 vs. 50-64 years: OR 1.37, 95% CI 1.33-1.41) and higher comorbidity score (≥ 4 vs. 0: OR 1.75, 95% CI 1.67-1.83) were significantly associated with repeat testing compared to those who received colonoscopy without repeat tests. Qualitative interview data revealed reasons underlying repeat testing, including colonoscopy avoidance, bargaining, and disbelief of positive results. CONCLUSIONS: Among patients in this cohort, 7.4% repeated fecal testing after an initial positive test. Of those, over half did not go on to receive a colonoscopy within 1 year. Efforts to improve CRC screening must address repeat fecal testing after a positive test as a barrier to completing colonoscopy.

"Queer people are excellent caregivers, but we're stretched so very thin": Psychosocial wellbeing and impacts of caregiving among LGBTQI cancer carers.

BACKGROUND: LGBTQI (lesbian, gay, bisexual, transgender, queer and/or intersex) communities are increasingly recognized as a vulnerable and high-risk population in oncology. LGBTQI cancer carers, including carers who are LGBTQI and other carers of LGBTQI people, experience many of the same stressors as LGBTQI patients but their support needs are often overlooked in the cancer literature. METHOD: This mixed-methods study examined distress and quality of life in LGBTQI cancer carers. Online surveys were completed by 129 carers and 31 carers took part in a one-to-one semi-structured interview. Analyses of variance (ANOVAs) tested for differences in psychosocial outcomes and carer experiences by gender, sexuality, age, carer relationship and carer/patient LGBTQI status. Reflexive thematic analysis of interviews and open-ended survey responses facilitated in-depth examination of subjective experiences. RESULTS: 42.6% of participants reported high or very high distress. Distress was significantly positively correlated with discrimination in cancer care, health impact, financial impact and lack of family support; it was negatively correlated with comfort in LGBTQI sexuality and gender identity, social support and quality of life. Four themes were identified in thematic analysis of qualitative data: (1) Identity on the sidelines: LGBTQI sexuality and gender pushed aside during cancer caregiving; (2) Fear of being shut-out: rejection and exclusion of LGBTQI cancer carers; (3) Lack of support for LGBTQI caregivers; and (4) Closer and stronger relationships due to a culture of mutual caregiving. CONCLUSIONS: LGBTQI cancer carers must contend with typical caregiving demands whilst also managing additional minority stressors, including discrimination, rejection from family, isolation from LGBTQI communities, and invisibility in healthcare and support services. Despite this, LGBTQI carers showed resilience in building their own mutually supportive networks to rally around the person with cancer, which were reported to ameliorate psychosocial vulnerabilities. Service providers need to recognize the needs of LGBTQI cancer carers through inclusive and reflective practices. This will facilitate trust and patient and carer sexuality and gender identity disclosure, with positive consequences for wellbeing and satisfaction with cancer care.

Development and initial evaluation of a clinical prediction model for risk of treatment resistance in first-episode psychosis: Schizophrenia Prediction of Resistance to Treatment (SPIRIT).

BACKGROUND: A clinical tool to estimate the risk of treatment-resistant schizophrenia (TRS) in people with first-episode psychosis (FEP) would inform early detection of TRS and overcome the delay of up to 5 years in starting TRS medication. AIMS: To develop and evaluate a model that could predict the risk of TRS in routine clinical practice. METHOD: We used data from two UK-based FEP cohorts (GAP and AESOP-10) to develop and internally validate a prognostic model that supports identification of patients at high-risk of TRS soon after FEP diagnosis. Using sociodemographic and clinical predictors, a model for predicting risk of TRS was developed based on penalised logistic regression, with missing data handled using multiple imputation. Internal validation was undertaken via bootstrapping, obtaining optimism-adjusted estimates of the model's performance. Interviews and focus groups with clinicians were conducted to establish clinically relevant risk thresholds and understand the acceptability and perceived utility of the model. RESULTS: We included seven factors in the prediction model that are predominantly assessed in clinical practice in patients with FEP. The model predicted treatment resistance among the 1081 patients with reasonable accuracy; the model's C-statistic was 0.727 (95% CI 0.723-0.732) prior to shrinkage and 0.687 after adjustment for optimism. Calibration was good (expected/observed ratio: 0.999; calibration-in-the-large: 0.000584) after adjustment for optimism. CONCLUSIONS: We developed and internally validated a prediction model with reasonably good predictive metrics. Clinicians, patients and carers were involved in the development process. External validation of the tool is needed followed by co-design methodology to support implementation in early intervention services.

Feasibility and acceptability of study methods and psychosocial interventions for body image among women diagnosed with breast cancer: A systematic review and narrative synthesis.

OBJECTIVE: This systematic review aimed to summarize evidence for the feasibility and acceptability of psychosocial interventions for body image among women diagnosed with breast cancer and the study methods used to evaluate the interventions in question. METHODS: Articles were identified via MEDLINE, CINAHL, CENTRAL, PsychINFO, and EMBASE. Inclusion criteria were: (1) peer-reviewed publication in English from 2000 onward with accessible full-text, (2) reported data on the feasibility and/or acceptability of psychosocial interventions and/or study methods, (3) included at least one measure of body image or reported a body-related theme, and (4) sample comprised women diagnosed with breast cancer. All study designs were eligible. Two reviewers independently performed study selection, data extraction, and quality assessment. RESULTS: Sixty-two articles were included. Participants and comparator groups varied as did interventions. Feasibility and acceptability of the interventions and study methods were inconsistently operationalized and reported across studies. Evidence of feasibility and acceptability was heterogeneous within and across studies, though mostly positive. CONCLUSION: Published psychosocial interventions for body image and study methods are generally feasible and acceptable. Findings should be used to advance the development, implementation, and evaluation of interventions designed to improve outcomes (body image or otherwise) for women diagnosed with breast cancer. SYSTEMATIC REVIEW REGISTRATION: This review was registered with the International Prospective Register of Systematic Reviews (PROSPERO; ID: CRD42021269062, 11 September 2021).

Symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa: A mixed-methods systematic review.

OBJECTIVE: A mixed-methods systematic review to determine reported symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa. METHODS: Literature searches were conducted in Medline, Embase, PsycINFO, Global Health, Web of Science, CINAHL, and the Cochrane Library. Quantitative and qualitative studies that comprised study populations of women with breast cancer from countries in Africa, detailing symptoms, concerns, and experiences of living with and beyond breast cancer were included. Inductive framework analysis was applied to organise existing literature with the Adversity, Restoration, and Compatibility framework and quality was assessed using the Mixed Methods Appraisal Tool. RESULTS: In total, 48 studies were included, comprising quantitative (n = 24), qualitative (n = 23) and mixed method (n = 1) studies. Women reported multiple complex and burdensome symptoms at all stages of the breast cancer disease trajectory. Multiple pervasive factors influencing participants' experiences included a lack of cancer knowledge, being removed from decision-making, religion, and the presence and use of traditional medicines. Literature relating to benefit finding, understanding identity for the future, and broader perspectives of well-being was absent. CONCLUSIONS: This review contributes insights and mapping of symptoms, concerns, and experiences of women with breast cancer in Africa. There is a great necessity to increase an understanding of the needs and experiences of women with breast cancer in Africa following cancer treatment, stages of remission, and longer-term monitoring and follow-up. This is required to ensure access to prompt and timely clinical and individualized supportive care for women with breast cancer in Africa.

Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life.

OBJECTIVE: To deliver and evaluate an educational intervention to equip health and social care professionals (professionals) on how best to support parents at end of life with cancer concerning their dependent children (<18). METHODS: An evidence-based and theory-driven face-to-face educational intervention was developed and evaluated using three levels of Kirkpatrick's Model of Evaluation. Pre-test, post-test surveys were completed immediately before-and-after the intervention using a validated self-efficacy scale and single-item questions evaluating perceived usefulness and relevance (levels one/two). Qualitative interviews ≥ 3-months post-intervention explored if, and how the intervention impacted professionals' practice (level three). Fourteen sessions were delivered at oncology settings to 347 professionals between 2021 and 2023. Two hundred seventy four professionals completed the pre-test survey, with 239 completing the post-test survey. Fourteen professionals were interviewed between three-and 19-months post-intervention. RESULTS: Quantitative findings demonstrated a statistically significant improvement in self-efficacy post-educational intervention (p < 0.001). Qualitative data highlighted professionals gained new approaches to progress end of life conversations with parents, despite some familial resistance to sharing the reality of the situation with children. Positive intervention content shaping clinical practice included the bereaved parent's lived experience, communication framework and roleplay videos. Some professionals considered a booster session and opportunities to practice conversations necessary to further consolidate learning into practice. CONCLUSIONS: Evidence and theory-driven education can positively impact professionals' provision of family-centred cancer care. Future studies should explore the impact of this educational intervention on familial outcomes. Alongside a sustainable delivery of this intervention, advanced communication skills programmes should incorporate parent-child end of life conversations.

Predictors of Nicotine Replacement Therapy Adherence: Mixed-Methods Research With a Convergent Parallel Design.

BACKGROUND: Few studies have examined the effect of baseline attitudes toward nicotine replacement therapy (NRT) on its actual adherence in a smoking cessation intervention. PURPOSE: This study (i) examined the predictability of baseline variables (quantitative data) on NRT adherence and (ii) explored the congruence of participants' statements about NRT products (qualitative data) during counseling sessions with their baseline attitudes. METHODS: This is a mixed-methods research study using a convergent parallel design. Participants included 74 individuals in the treatment group who received behavioral counseling and combination NRT. A Poisson regression analysis was performed to identify baseline variables predicting NRT adherence. Thematic analysis was completed with a subset of participants (n = 38) who varied in NRT attitude scores and adherence. A joint display was created to integrate quantitative and qualitative data and discover convergence. RESULTS: Approximately 59% of the participants (41/74) used NRT continuously for ≥5 weeks. Having negative attitudes toward NRT and depressive symptoms predicted NRT adherence even after controlling for education and anxiety symptoms. Thematic analysis revealed that NRT adherence is a learning process that consists of the following three distinctive but interrelated phases: (i) information needs, (ii) comprehensive readiness, and (iii) experiential learning. Of the 38 participants, 34 (89.5%) showed convergence between baseline attitude scores and statements about NRT made during counseling sessions. CONCLUSIONS: Individuals who have negative attitudes toward NRT are less likely to use the products in a smoking cessation intervention. Counselors should assess attitudes toward NRT at baseline and address them proactively during counseling sessions.

Few research studies have explored how attitudes toward nicotine substitutes (nicotine patches, gum, and lozenges) affect people's adherence to those substitutes (using them consistently as directed). This study examined (i) whether age, gender, education, attitudes toward the substitutes, and depressive and anxiety symptoms would predict peoples' adherence to these nicotine substitutes during a study to help stop smoking and (ii) whether peoples' statements about their experiences with the substitutes would reveal any patterns. The study was conducted with 74 individuals who received behavioral counseling and combination nicotine substitutes. Having negative attitudes toward the substitutes and depressive symptoms predicted adherence. Age, gender, education, positive attitudes, and anxiety symptoms did not. Statements from a subset of participants (n = 38) revealed that adherence to the substitutes is a learning process that consists of the following three phases: (i) needing more information assuring the safety of the substitutes, (ii) being mentally and situationally ready, and (iii) learning while being involved in the process such as "trial and error." Individuals who have negative attitudes toward the substitutes are less likely to use them, and counselors should assess attitudes toward nicotine replacement therapy before suggesting their use and address these attitudes proactively during smoking cessation counseling sessions.

Gaps in Patient-Centered Decision-Making Related to Complex Surgery: A Mixed-Methods Study.

INTRODUCTION: We sought to understand the perceptions of surgeons around patient preferred roles in decision-making and their approaches to patient-centered decision-making (PCDM). METHODS: A concurrent embedded mixed-methods design was utilized among a cohort of surgeons performing complex surgical procedures. Data were collected through online surveys. Associations between perceptions and PCDM approaches were examined. RESULTS: Among 241 participants, most respondents were male (67.2%) with an average age of 47.6 y (standard deviation = 10.3); roughly half (52.4%) had practiced medicine for 10 or more years. Surgeons most frequently agreed (94.2%) with the statement, "Patients prefer to make health decisions on their own after seriously considering their physician's opinion." Conversely, surgeons most frequently disagreed (73.0%) with the statement, "Patients prefer that their physician make health decisions for them." Nearly one-third (30.4%) of surgeon qualitative responses (n = 115) indicated that clinical/biological information would help them tailor their approach to PCDM. Only 12.2% of respondents indicated that they assess patient preferences regarding both decision-making and information needs. CONCLUSIONS: Surgeons most frequently agree that patients want to make their own health decisions after seriously considering their physicians opinion. A greater focus on what information surgeons should know before treatment decision-making may help optimize patient experience and outcomes related to complex surgical procedures.

Attribute Development in Health-Related Discrete Choice Experiments: A Systematic Review of Qualitative Methods and Techniques to Inform Quantitative Instruments.

OBJECTIVES: This review sought to identify the qualitative methods and techniques that researchers have used in the past decade to develop attributes and inform health-related discrete choice experiments (DCEs) surveys from a patient perspective. METHODS: The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for reporting systematic reviews. An adapted appraisal tool following guidelines for reporting qualitative research for quantitative instruments and criteria for attribute development in DCEs was applied for quality assessment and data extraction. A narrative approach was used to synthesize data. This examination included consideration of issues pertaining to sampling, data collection, data analysis, attribute list reduction, wording, methodological adaptations to capture patient preferences, and testing the pre-experimental design decisions of the DCE survey. RESULTS: Of 8505 articles identified for abstract screening, 680 were included for full-text screening, 36 of which met the inclusion criteria. Practices to improve methodological robustness included pre-data collection materials to inform instruments, data collection methods specific for decision-making scenarios, purposeful selection of data analysis methods to address the research question, and participants' involvement in reducing the list of attributes. Examples of methodological adaptations for patients were noted. CONCLUSIONS: DCEs have the potential to become a mixed-method approach in which the qualitative phase informs a reduced list of attributes for a survey, serves the predesign decisions of the experiment by testing trade-offs, overlapping, understandability, face, and content validity and provides explanations of the quantitative results. Establishing guidelines for using qualitative methods for DCE attribute development may help to broadly enhance the methodological robustness of DCEs.

PrEP Stigma as a Minority Stressor among Black Sexual Minority Men: A Mixed-Methods Study.

Black sexual minority men (BSMM) remain disproportionately affected by HIV, yet Pre-exposure prophylaxis (PrEP) uptake in this population remains relatively low. Informed by minority stress theory, PrEP stigma may manifest in and exacerbate societal marginalization based on sexuality and race. We used an exploratory sequential mixed-methods approach to determine if PrEP-specific stigma was associated with reduced PrEP uptake among BSMM, and qualitatively explored how PrEP use is stigmatized among BSMM. We analyzed cross-sectional data from a pilot sample of BSMM (n = 151) collected in late 2020 in the United States, testing for associations between PrEP stigma and PrEP use using modified Poisson regression. Subsequently, we selected participants (n = 23) from this sample for qualitative interviews starting in 2022. Responses to questions related to PrEP stigma were analyzed using thematic analysis. PrEP stigma was associated less than half the PrEP use (aPR = 0.43, 95% CI = 0.24, 0.75) among BSMM after adjustment. Qualitatively, we identified three major themes in how PrEP use is stigmatized among BSMM: PrEP-specific sexual stigma, intersections between PrEP and HIV stigma, and PrEP misinformation and disinformation. Aligned with minority stress theory, each theme was based in part in stigma related to sexuality or race. We found strong relationships between PrEP stigma and PrEP use independent of several sociobehavioral factors. Each of our themes were based in part in minority stressors, and underscore the importance of culturally competent PrEP promotion efforts towards BSMM. Addressing stigma is a core component of health equity efforts towards ending the HIV epidemic.

Challenges to the HIV Care Continuum During the COVID-19 Pandemic in Mexico: A Mixed Methods Study.

The COVID-19 pandemic has been reported to disrupt the access to care of people who live with HIV (PWH). The impact of the pandemic on the longitudinal HIV care continuum, however, has not been properly evaluated. We performed a mixed-methods study using data from the Mexican System of Distribution, Logistics, and ART Surveillance on PWH that are cared for in the state of Oaxaca. We evaluated the number of HIV diagnoses performed in the state before and during the pandemic with an interrupted time series. We used the longitudinal HIV care continuum framework to describe the stages of HIV care before and during the pandemic. Finally, we performed a qualitative analysis to determine which were the challenges faced by staff and users regarding HIV care during the pandemic. New HIV diagnoses were lower during the first year of the pandemic compared with the year immediately before. Among 2682 PWH with enough information to determine their status of care, 728 started receiving care during the COVID-19 pandemic and 1954 before the pandemic. PWH engaged before the pandemic spent 42825 months (58.2% of follow-up) in optimal HIV control compared with 3061 months (56.1% of follow-up) for those engaged in care during the pandemic. Staff and users reported decreases in the frequency of appointments, prioritisation of unhealthy users, larger disbursements of ART medication, and novel communication strategies with PWH. Despite challenges due to government cutbacks, changes implemented by staff helped maintain HIV care due to higher flexibility in ART delivery and individualised attention.

HIV Pre-exposure Prophylaxis (PrEP) Care in Belgium: A mixed-methods Study on PrEP Users' Experiences and Service Delivery Preferences.

In Belgium, HIV pre-exposure prophylaxis (PrEP) services are mainly provided through specialised HIV clinics. To optimise PrEP uptake and retention in care, we require insights into users' perspectives on PrEP care. We aimed to elicit experiences with, and preferences for, PrEP service delivery among PrEP users in Belgium, including willingness to involve their family physician (FP) in PrEP care. We adopted a sequential mixed-methods design. We used a web-based longitudinal study among 326 PrEP users that consisted of two questionnaires at six-month intervals, and complemented this with 21 semi-structured interviews (September 2020-January 2022). We conducted descriptive analyses and logistic regression to examine factors associated with willingness to involve their FP in PrEP care. Interviews were analysed using thematic analysis. Survey respondents reported high satisfaction with care received in HIV clinics [median score 9 (IQR 8-10), 10='very satisfied']. Interviews revealed the importance of regular HIV/STI screening, and the expertise and stigma-free environment of HIV clinics. Yet, they also contextualised service delivery barriers reported in the questionnaire, including the burden of cost and challenges integrating PrEP visits into their private and professional lives. Although 63.8% (n = 208/326) of baseline respondents preferred attending an HIV clinic for PrEP follow-up, 51.9% (n = 108/208) of participants in the follow-up questionnaire reported to be willing to have their FP involved in PrEP care. Participants reporting trust in FPs' PrEP and sexual health expertise, or who didn't feel judged by their FP, were more likely to be willing to involve them in PrEP care. Therefore, we recommend a differentiated PrEP service delivery approach, including involving FPs, to make PrEP care more client-centred.

An evaluation of an employment assistance program focused on people living with HIV in Toronto, Canada.

Unemployment is more common among people living with HIV (PLWH) compared to the general population. PLWH who are employed have better physical and mental health outcomes compared to unemployed PLWH. The main objective of this mixed-methods study was to conduct a program evaluation of Employment Action (EACT), a community-based program that assists PLWH in Toronto, Ontario, Canada to maintain meaningful employment. We extracted quantitative data from two HIV services databases used by EACT, and collected qualitative data from 12 individuals who had been placed into paid employment through EACT. From 131 clients included in the analysis, 38.1% (n = 50) maintained their job for at least 6 weeks within the first year of enrollment in the EACT program. Gender, ethnicity, age, and first language did not predict employment maintenance. Our interviews highlighted the barriers and facilitators to effective service delivery. Key recommendations include implementing skills training, embedding PLWH as EACT staff, and following up with clients once they gain employment. Investment in social programs such as EACT are essential for strengthening their data collection capacity, active outreach to service users, and sufficient planning for the evaluation phase prior to program implementation.