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.

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.

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.

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.

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.

An Assessment of Patient, Caregiver, and Clinician Perspectives on the Post-discharge Phase of Care.

OBJECTIVE: We sought to elicit patients', caregivers', and health care providers' perceptions of home recovery to inform care personalization in the learning health system. SUMMARY BACKGROUND DATA: Postsurgical care has shifted from the hospital into the home. Daily care responsibilities fall to patients and their caregivers, yet stakeholder concerns in these heterogeneous environments, especially as they relate to racial inequities, are poorly understood. METHODS: Surgical oncology patients, caregivers, and clinicians participated in freelisting; an open-ended interviewing technique used to identify essential elements of a domain. Within 2 weeks after discharge, participants were queried on 5 domains: home independence, social support, pain control, immediate, and overall surgical impact. Salience indices, measures of the most important words of interest, were calculated using Anthropac by domain and group. RESULTS: Forty patients [20 whites and 20 African-Americans (AAs)], 30 caregivers (17 whites and 13 AAs), and 20 providers (8 residents, 4 nurses, 4 nurse practitioners, and 4 attending surgeons) were interviewed. Patients and caregivers attended to the personal recovery experience, whereas providers described activities and individuals associated with recovery. All groups defined surgery as life-changing, with providers and caregivers discussing financial and mortality concerns. Patients shared similar thoughts about social support and self-care ability by race, whereas AA patients described heterogeneous pain management and more hopeful recovery perceptions. AA caregivers expressed more positive responses than white caregivers. CONCLUSIONS: Patients live the day-to-day of recovery, whereas caregivers and clinicians also contemplate more expansive concerns. Incorporating relevant perceptions into traditional clinical outcomes and concepts could enhance the surgical experience for all stakeholders.

Provider Barriers and Facilitators of Breast Cancer Guideline-Concordant Therapy Delivery in Botswana: A Consolidated Framework for Implementation Research Analysis.

INTRODUCTION: Systemic treatment for breast cancer in sub-Saharan Africa (SSA) is cost effective. However, there are limited real-world data on the translation of breast cancer treatment guidelines into clinical practice in SSA. The study aimed to identify provider factors associated with adherence to breast cancer guideline-concordant care at Princess Marina Hospital (PMH) in Botswana. MATERIALS AND METHODS: The Consolidated Framework for Implementation Research was used to conduct one-on-one semistructured interviews with breast cancer providers at PMH. Purposive sampling was used, and sample size was determined by thematic saturation. Transcribed interviews were double-coded and analyzed in NVivo using an integrated analysis approach. RESULTS: Forty-one providers across eight departments were interviewed. There were variations in breast cancer guidelines used. Facilitators included a strong tension for change and a government-funded comprehensive cancer care plan. Common provider and health system barriers were lack of available resources, staff shortages and poor skills retention, lack of relative priority compared with HIV/AIDS, suboptimal interdepartmental communication, and lack of a clearly defined national cancer control policy. Community-level barriers included accessibility and associated transportation costs. Participants recommended the formal implementation of future guidelines that involved key stakeholders in all phases of planning and implementation, strategic government buy-in, expansion of multidisciplinary tumor boards, leveraging nongovernmental and academic partnerships, and setting up monitoring, evaluation, and feedback processes. DISCUSSION: The study identified complex, multilevel factors affecting breast cancer treatment delivery in Botswana. These results and recommendations will inform strategies to overcome specific barriers in order to promote standardized breast cancer care delivery and improve survival outcomes. IMPLICATIONS FOR PRACTICE: To address the increasing cancer burden in low- and middle-income countries, resource-stratified guidelines have been developed by multiple international organizations to promote high-quality guideline-concordant care. However, these guidelines still require adaptation in order to be successfully translated into clinical practice in the countries where they are intended to be used. This study highlights a systematic approach of evaluating important contextual factors associated with the successful adaptation and implementation of resource-stratified guidelines in sub-Saharan Africa. In Botswana, there is a critical need for local stakeholder input to inform country-level and facility-level resources, cancer care accessibility, and community-level barriers and facilitators.

A Qualitative Assessment of Factors That Children, Parents, and Clinicians Prioritize in the Setting of Elective Anesthesia and Surgery.

BACKGROUND: Assessing the postoperative recovery of pediatric patients is challenging as there is no validated comprehensive patient-centered recovery assessment tool for this population. A qualitative investigative approach with in-depth stakeholder interviews can provide insight into the recovery process and inform the development of a comprehensive patient-centered postoperative assessment tool for children. METHODS: We conducted open-ended, semistructured interviews with children 6-12 years old undergoing elective surgery (n = 35), their parents (n = 37), and clinicians (n = 23) who commonly care for this population (nurses, anesthesiologists, and surgeons). A codebook was developed and analyzed using NVivo 12 Plus. The codebook was iteratively developed using a qualitative content analysis approach with modifications made throughout to refine codes. We report the results of this thematic analysis of patient, parent, and clinician transcripts. RESULTS: Postoperative recovery priorities/concerns overlapped and also diverged across the 3 groups. Topics prioritized by children included mobility and self-care, as well as access to a strong social support network following surgery. The majority of children reported feeling anxious about the surgery and separating from their parents, as well as sadness about their inability to participate in activities while recovering. Although children highly valued familial support during recovery, there was variable awareness of the impact of surgery on family members and support network. In contrast, parents focused on the importance of clear and open communication among themselves and the health care team and being equipped with appropriate knowledge and resources on discharge. The immediate repercussions of the child's surgery, such as pain, confusion, and nausea, appeared to be a primary focus of both parents and clinicians when describing recovery. Clinicians had a comprehensive awareness of the possible psychological impacts of surgery in children, while parents reported varying degrees of awareness or concern regarding longer-term or more latent impacts of surgery and anesthesia (eg, anxiety and depression). Prior experience with pediatric surgery emerged as a distinguishing characteristic for parents and clinicians as parents without prior experience expressed less understanding of or comfort with managing a child's recovery following surgery. CONCLUSIONS: A patient-centered qualitative investigative approach yielded insights regarding the importance of various aspects of recovery in pediatric patients, their parents, and members of the health care team. Specifically, this investigation highlighted the importance of clear communication providing anticipatory guidance for families presenting for elective surgery in an effort to optimize patient recovery. This information will be used in the development of a patient-centered recovery assessment tool.

Serial Neurologic Assessment in Pediatrics (SNAP): A New Tool for Bedside Neurologic Assessment of Critically Ill Children.

OBJECTIVES: We developed a tool, Serial Neurologic Assessment in Pediatrics, to screen for neurologic changes in patients, including those who are intubated, are sedated, and/or have developmental disabilities. Our aims were to: 1) determine protocol adherence when performing Serial Neurologic Assessment in Pediatrics, 2) determine the interrater reliability between nurses, and 3) assess the feasibility and acceptability of using Serial Neurologic Assessment in Pediatrics compared with the Glasgow Coma Scale. DESIGN: Mixed-methods, observational cohort. SETTING: Pediatric and neonatal ICUs. SUBJECTS: Critical care nurses and patients. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Serial Neurologic Assessment in Pediatrics assesses Mental Status, Cranial Nerves, Communication, and Motor Function, with scales for children less than 6 months, greater than or equal to 6 months to less than 2 years, and greater than or equal to 2 years old. We assessed protocol adherence with standardized observations. We assessed the interrater reliability of independent Serial Neurologic Assessment in Pediatrics assessments between pairs of trained nurses by percent- and bias- adjusted kappa and percent agreement. Semistructured interviews with nurses evaluated acceptability and feasibility after nurses used Serial Neurologic Assessment in Pediatrics concurrently with Glasgow Coma Scale during routine care. Ninety-eight percent of nurses (43/44) had 100% protocol adherence on the standardized checklist. Forty-three nurses performed 387 paired Serial Neurologic Assessment in Pediatrics assessments (149 < 6 mo; 91 ≥ 6 mo to < 2 yr, and 147 ≥ 2 yr) on 299 patients. Interrater reliability was substantial to near-perfect across all components for each age-based Serial Neurologic Assessment in Pediatrics scale. Percent agreement was independent of developmental disabilities for all Serial Neurologic Assessment in Pediatrics components except Mental Status and lower extremity Motor Function for patients deemed "Able to Participate" with the assessment. Nurses reported that they felt Serial Neurologic Assessment in Pediatrics, compared with Glasgow Coma Scale, was easier to use and clearer in describing the neurologic status of patients who were intubated, were sedated, and/or had developmental disabilities. About 92% of nurses preferred to use Serial Neurologic Assessment in Pediatrics over Glasgow Coma Scale. CONCLUSIONS: When used by critical care nurses, Serial Neurologic Assessment in Pediatrics has excellent protocol adherence, substantial to near-perfect interrater reliability, and is feasible to implement. Further work will determine the sensitivity and specificity for detecting clinically meaningful neurologic decline.

Practical Guidance for Studies Using Freelisting Interviews.

Freelisting is a qualitative interviewing technique that has recently grown in popularity. It is an excellent tool for rapidly exploring how groups of people think about and define a particular health-related domain and is well suited for engaging communities and identifying shared priorities. In this article, we outline 7 practical considerations for conducting freelisting studies summarized from 16 articles conducted by the authors at the University of Pennsylvania and Thomas Jefferson University in partnership with community-based organizations and students. Our recommendations can inform study design, data collection, and data analysis for investigators who are interested in using freelisting interviews in their research.

The Abdominal Hernia-Q: Development, Psychometric Evaluation, and Prospective Testing.

OBJECTIVE: Our study completes the development and estimates the psychometric properties of a novel, ventral hernia-specific patient reported outcomes (PRO) tool-the Abdominal Hernia-Q (AHQ). SUMMARY BACKGROUND DATA: A standardized method for measuring hernia-related PRO has not been identified. There remains a need for a broadly applicable, hernia-specific tool that incorporates patient viewpoints and offers pre- and postoperative forms. METHODS: Concept elicitation interviews, focus groups, and cognitive debriefing interviews were completed to define content. The preoperative AHQ was administered to patients scheduled to have a ventral hernia repair (VHR). The postoperative AHQ was administered to patients within 24 months post-VHR. The SF-12 and HerQLes were concurrently administered. Psychometric evaluation was performed. Subsequently, the AHQ (pre: 8 items; post: 16 items) underwent prospective testing. RESULTS: Cross-sectional evaluations of patient responses to the AHQ (pre n = 104; post n = 261) demonstrated high internal consistency (Cronbach α pre = 0.86; post = 0.90) and moderate disattenuated correlations with the HerQLes (pre r = -0.71 and post r = -0.70) and the SF-12 domains (pre and post r ≥ 0.5 for 7 of 8 domains). Principal components analyses produced 2 factors preoperatively and 3 factors postoperatively. In prospective testing (n = 67), the AHQ scores replicated the cross-sectional psychometric results and suggested sensitivity to clinical outcomes. CONCLUSIONS: Through patient involvement and rigorous, iterative psychometric evaluation, we have produced substantial data to suggest the validity and reliability of AHQ scores in measuring hernia-specific PRO. The AHQ advances the clinical management and treatment of patients with abdominal hernias by providing a more complete understanding of patient-defined outcomes.

A Partially Structured Postoperative Handoff Protocol Improves Communication in 2 Mixed Surgical Intensive Care Units: Findings From the Handoffs and Transitions in Critical Care (HATRICC) Prospective Cohort Study.

OBJECTIVE: To assess the effectiveness of standardizing operating room (OR) to intensive care unit (ICU) handoffs in a mixed surgical population. SUMMARY OF BACKGROUND DATA: Standardizing OR to ICU handoffs improves information transfer after cardiac surgery, but there is limited evidence in other surgical contexts. METHODS: This prospective interventional cohort study (NCT02267174) was conducted in 2 surgical ICUs in 2 affiliated hospitals. From 2014 to 2016, we developed, implemented, and assessed the effectiveness of a new standardized handoff protocol requiring bedside clinician communication using an information template. The primary study outcome was number of information omissions out of 13 possible topics, recorded by trained observers. Data were analyzed using descriptive statistics, bivariate analyses, and multivariable regression. RESULTS: We observed 165 patient transfers (68 pre-, 97 postintervention). Before standardization, observed handoffs had a mean 4.7 ±â€Š2.9 information omissions each. After standardization, information omissions decreased 21.3% to 3.7 ±â€Š1.9 (P = 0.023). In a pre-specified subanalysis, information omissions for new ICU patients decreased 36.2% from 4.7 ±â€Š3.1 to 3.0 ±â€Š1.6 (P = 0.008, interaction term P = 0.008). The decrement in information omissions was linearly associated with the number of protocol steps followed (P < 0.001). After controlling for patient stability, the intervention was still associated with reduced omissions. Handoff duration increased after standardization from 4.1 ±â€Š3.3 to 8.0 ±â€Š3.9 minutes (P < 0.001). ICU mortality and length of stay did not change postimplementation. CONCLUSION: Standardizing OR to ICU handoffs significantly improved information exchange in 2 mixed surgical ICUs, with a concomitant increase in handoff duration. Additional research is needed to identify barriers to and facilitators of handoff protocol adherence.

Determinants of stigma among patients with hepatitis C virus infection.

Stigma around hepatitis C virus (HCV) infection is an important and understudied barrier to HCV treatment and elimination. The determinants of HCV-related stigma, including the impacts of stage of HCV treatment (ie spontaneously cleared; diagnosed, untreated; previously treated, not cured; currently being treated; and treated, cured) and coinfection with human immunodeficiency virus (HIV), remain unknown. To address these gaps, we conducted a cross-sectional study among patients with a history of HCV infection (n = 270) at outpatient clinics in Philadelphia from July 2018 to May 2019. We evaluated stigma using the validated HCV Stigma Scale, adapted from the Berger HIV Stigma Scale. Associations among HCV-related stigma and hypothesized demographic, behavioural, and clinical risk factors were evaluated by multivariable linear regression. Most participants (95.5%) experienced HCV-related stigma. Mean stigma scores did not differ significantly between HCV-monoinfected and HIV/HCV-coinfected participants (P = .574). However, we observed significant interactions between HIV status and multiple determinants; therefore, we stratified analyses by HIV status. Among HIV/HCV-coinfected participants, previous HCV treatment without cure, female gender, Hispanic/Latinx ethnicity and some college education were significantly associated with higher HCV-stigma scores. An annual income of $10 000-$40 000 was associated with significantly lower stigma scores. No significant associations were observed among HCV-monoinfected participants. We found that most participants experienced stigma associated with HCV diagnosis. While stigma scores were similar between HCV-monoinfected and HIV/HCV-coinfected participants, the determinants associated with HCV stigma differed by HIV status. Understanding how experiences of stigma differ between HCV-monoinfected and HIV/HCV-coinfected patients may aid in the development of targeted interventions to address the HCV epidemic.

Early Childhood Sleep Intervention in Urban Primary Care: Caregiver and Clinician Perspectives.

BACKGROUND: Despite significant income-related disparities in pediatric sleep, few early childhood sleep interventions have been tailored for or tested with families of lower socio-economic status (SES). This qualitative study assessed caregiver and clinician perspectives to inform adaptation and implementation of evidence-based behavioral sleep interventions in urban primary care with families who are predominantly of lower SES. METHODS: Semi-structured interviews were conducted with (a) 23 caregivers (96% mothers; 83% Black; 65% ≤125% U.S. poverty level) of toddlers and preschoolers with insomnia or insufficient sleep and (b) 22 urban primary care clinicians (physicians, nurse practitioners, social workers, and psychologists; 87% female; 73% White). Guided by the Consolidated Framework for Implementation Research, the interview guide assessed multilevel factors across five domains related to intervention implementation. Qualitative data were analyzed using an integrated approach to identify thematic patterns across participants and domains. RESULTS: Patterns of convergence and divergence in stakeholder perspectives emerged across themes. Participants agreed upon the importance of child sleep and intervention barriers (family work schedules; household and neighborhood factors). Perspectives aligned on intervention (flexibility; collaborative and empowering care) and implementation (caregiver-to-caregiver support and use of technology) facilitators. Clinicians identified many family barriers to treatment engagement, but caregivers perceived few barriers. Clinicians also raised healthcare setting factors that could support (integrated care) or hinder (space and resources) implementation. CONCLUSIONS: Findings point to adaptations to evidence-based early childhood sleep intervention that may be necessary for effective implementation in urban primary care. Such adaptations could potentially reduce significant pediatric sleep-related health disparities.

Causal Pathways Between Severe Mental Illness and Behaviors Related to HIV: Patient Perspectives.

The purpose of this study was to identify causal pathways between HIV infection and severe mental illness. Data were collected through open-ended, semi-structured interviews. An integrated approach to the analysis, using inductive and deductive coding, was used to identify patterns among respondents. Standardized instruments were used to characterize the sample in terms of risk behaviors, physical and mental functioning and depression. Twenty-six men and women with a diagnosis of HIV and unipolar depression (n = 11) or schizophrenia/schizoaffective versus bipolar disorder (n = 15) participated. For persons with unipolar depression, the HIV diagnosis often preceded depressive symptoms. For persons with schizophrenia/schizoaffective versus bipolar disorder, mania and psychosis symptoms often preceded HIV. Substance use, incarceration and adverse childhood experiences were common across diagnoses. Attention to the directionality of effects between mental illness and HIV has important implications for anticipatory guidance for infectious disease specialists, primary care providers and public health practitioners as well as policymakers.

What makes one respond to acupuncture for insomnia? Perspectives of cancer survivors.

OBJECTIVE: Like any therapy, acupuncture is effective for some patients, while not helpful for others. Understanding from a patients' perspective what makes one respond or not to acupuncture can help guide further intervention development. This study aimed to identify factors that influence the perception of acupuncture's therapeutic effect among cancer survivors with insomnia. METHOD: We conducted post-treatment semi-structured interviews with cancer survivors who were randomized to the acupuncture group in a clinical trial for the treatment of insomnia. Survivors were categorized into Responders and Non-Responders to acupuncture treatment based on the change in the Insomnia Severity Index with a reduction of eight points or greater as the cut-off for the response. An integrated approach to data analysis was utilized by merging an a priori set of codes derived from the key ideas and a set of codes that emerged from the data through a grounded theory approach. Codes were examined for themes and patterns. RESULTS: Among 28 cancer survivors interviewed, 18 (64%) were classified as Responders. Participants perceived the ability to respond to acupuncture as dependent on treatment that effectively: (1) alleviated co-morbidities contributing to insomnia, (2) supported sleep hygiene practices, and (3) provided a durable therapeutic effect. Acupuncture treatment that did not address one of these themes often detracted from positive treatment outcomes and diminished perceived benefit from acupuncture. SIGNIFICANCE OF RESULTS: We identified patient-perceived contributors to response to acupuncture, such as co-morbid medical conditions, adequate support for sleep hygiene practices, and temporary therapeutic relief. Addressing these factors may improve the overall effectiveness of acupuncture for insomnia.

Surgical Consultation as Social Process: Implications for Shared Decision Making.

OBJECTIVE: This qualitative study examines surgical consultation as a social process and assesses its alignment with assumptions of the shared decision-making (SDM) model. SUMMARY OF BACKGROUND DATA: SDM stresses the importance of patient preferences and rigorous discussion of therapeutic risks/benefits based on these preferences. However, empirical studies have highlighted discrepancies between SDM and realities of surgical decision making. Qualitative research can inform understanding of the decision-making process and allow for granular assessment of the nature and causes of these discrepancies. METHODS: We observed consultations between 3 general surgeons and 45 patients considering undergoing 1 of 2 preference-sensitive elective operations: (1) hernia repair, or (2) cholecystectomy. These patients and surgeons also participated in semi-structured interviews. RESULTS: By the time of the consultation, patients and surgeons were predisposed toward certain decisions by preceding events occurring elsewhere. During the visit, surgeons had differential ability to arbitrate surgical intervention and construct the severity of patients' conditions. These upstream dynamics frequently displaced the centrality of the risk/benefit-based consent discussion. CONCLUSION: The influence of events preceding consultation suggests that decision-making models should account for broader spatiotemporal spans. Given surgeons' authority to define patients' conditions and control service provision, SDM may be premised on an overestimation of patients' power to alter the course of decision making once in a specialist's office. Considering the subordinate role of the risk/benefit discussion in many surgical decisions, it will be important to study if and how the social process of decision making is altered by SDM-oriented decision aids that foreground this discussion.

Qualitative study of system-level factors related to genomic implementation.

PURPOSE: Research on genomic medicine integration has focused on applications at the individual level, with less attention paid to implementation within clinical settings. Therefore, we conducted a qualitative study using the Consolidated Framework for Implementation Research (CFIR) to identify system-level factors that played a role in implementation of genomic medicine within Implementing GeNomics In PracTicE (IGNITE) Network projects. METHODS: Up to four study personnel, including principal investigators and study coordinators from each of six IGNITE projects, were interviewed using a semistructured interview guide that asked interviewees to describe study site(s), progress at each site, and factors facilitating or impeding project implementation. Interviews were coded following CFIR inner-setting constructs. RESULTS: Key barriers included (1) limitations in integrating genomic data and clinical decision support tools into electronic health records, (2) physician reluctance toward genomic research participation and clinical implementation due to a limited evidence base, (3) inadequate reimbursement for genomic medicine, (4) communication among and between investigators and clinicians, and (5) lack of clinical and leadership engagement. CONCLUSION: Implementation of genomic medicine is hindered by several system-level barriers to both research and practice. Addressing these barriers may serve as important facilitators for studying and implementing genomics in practice.

Using Crowdsourcing as a Platform to Evaluate Lay Perception of Prophylactic Mesh Placement.

BACKGROUND: Prophylactic mesh placement (PMP) at the time of open abdominal surgery has gained momentum over the last decade. However, there remains an identifiable gap in the literature regarding patient-reported outcomes and qualitative metrics. In effort to gauge the population's understanding or familiarity with PMP, this study provides an educational framework and uses crowdsourcing as a novel means to assess perception among the general population. METHODS: A cross-sectional survey study was conducted among the general public to elicit perspectives on PMP. An online crowdsourcing platform was used to capture responses to a questionnaire. Pearson's correlation coefficients, paired t-test, chi-square test, and Fisher's exact tests were performed. RESULTS: Of 433 respondents, 338 (78.1%) were included. Individuals who had previously undergone surgery and those who had prior hernia repair were more likely to choose PMP than surgically naïve patients (P = 0.06). CONCLUSIONS: The majority of respondents support the use of PMP. This study contributes to the existing body of literature on PMP and serves as the first qualitative description to gauge the population's perception and understanding of this surgical technique. Within the evolving health care landscape, understanding quality-of-life measures have become increasingly important in defining successful surgical outcomes. Although the data-driven level-I evidence supports the clinical use of PMP, this study intends to establish a framework for future patient-reported outcome studies.

Ongoing challenges in access to diabetes care among the indigenous population: perspectives of individuals living in rural Guatemala.

BACKGROUND: Indigenous persons living in Latin America suffer from a higher prevalence of type 2 diabetes compared to their non-indigenous counterparts. This difference has been attributed to a wide range of factors. Future interventions could be influenced by a deeper understanding of the challenges that impact care in rural regions and in other low-income settings. METHODS: This study was conducted using a modified grounded theory approach. Extended observations and fifteen interviews were performed with adult male and female residents of three rural Mayan towns in Sololá Department, Guatemala using purposive sampling. Questions focused on the perceptions of individuals living with type 2 diabetes and their caregivers regarding disease and treatment. RESULTS: Across interviews the most common themes that emerged included mistreatment by healthcare providers, mental health comorbidity, and medication affordability. These perceptions were in part influenced by indigeneity, poverty, and/or gender. CONCLUSIONS: Both structural and cultural barriers continue to impact diabetes care for indigenous communities in rural Guatemala. The interviews in this study suggest that indigenous people experience mistrust in the health care system, unreliable access to care, and mental health comorbidity in the context of type 2 diabetes care. These experiences are shaped by the complex relationship among poverty, gender, and indigeneity in this region. Targeted interventions that are conscious of these factors may increase their chances of success when attempting to address similar health disparities in comparable populations.