Community-engaged implementation of a safety bundle for pregnancy-related severe hypertension in the outpatient setting: protocol for a type 3 hybrid study with a multiple baseline design.

BACKGROUND: Hypertensive disorders of pregnancy are among the leading causes of maternal mortality and morbidity in the U.S., with rates highest among birthing people who are Black, rural residents, and/or have low-income. Severe hypertension, in particular, increases risk of stroke and other serious pregnancy complications. To promote early detection and treatment of severe hypertension, the Alliance for Innovation on Maternal Health developed the Severe Hypertension During Pregnancy and Postpartum Period Safety Bundle (HTN Bundle). Multiple studies have demonstrated the HTN Bundle's effectiveness in the inpatient setting. With funding from the National Heart, Lung, and Blood Institute, we engaged community partners to adapt the HTN Bundle for the outpatient setting (i.e., O-HTN Bundle) and planned for its implementation. In this paper, we describe the protocol for a study evaluating O-HTN Bundle implementation in 20 outpatient clinics serving Black, rural, and/or low-income populations. METHODS: This study is a hybrid type 3 effectiveness-implementation trial with a multiple baseline design. We will implement the O-HTN Bundle in three successive cohorts of clinics using a multicomponent implementation strategy to engage community partners (coalition, patient workgroup) and support clinics (training, facilitation, education materials, and simulations of severe hypertension events). To test the strategy, we will compare clinic fidelity to evidence-based guidelines for (a) patient education on hypertension and (b) blood pressure measurement technique, with repeated measures occurring before and after strategy receipt. We will also observe strategy effects on community- and clinic-level intermediate outcomes (community engagement, organizational readiness), implementation outcomes (reach, adoption, fidelity, maintenance), and effectiveness outcomes (receipt of guideline concordant care). Analyses will address whether outcomes are equitable across Black, rural, and/or low-income subgroups. Guided by the Consolidated Framework for Implementation Research 2.0, we will use mixed methods to identify adaptations and other determinants of implementation success. DISCUSSION: This study integrates community engagement and implementation science to promote equitable and timely response to severe HTN in the outpatient setting during pregnancy and postpartum. This is one of the first studies to implement an outpatient HTN Bundle and to use simulation as a strategy to reinforce team-based delivery of guideline concordant care. TRIAL REGISTRATION: This study was registered with ClinicalTrials.gov as "Testing Implementation Strategies to Support Clinic Fidelity to an Outpatient Hypertension Bundle (AC3HIEVE)." Registration number NCT06002165, August 21, 2023: https://clinicaltrials.gov/study/NCT06002165 .

Patient motivators of postoperative electronic patient-reported outcome symptom monitoring use in thoracic surgery patients: a qualitative study.

BACKGROUND: Electronic patient-reported outcome (ePRO) systems can be used to engage patients in remote symptom monitoring to support postoperative care. We interviewed thoracic surgery patients with ePRO experience to identify factors that influenced use of ePROs to report their symptoms post-discharge. METHOD: This qualitative study used semi-structured telephone interviews with adults who underwent major thoracic surgery at an academic medical center in North Carolina. Individuals who enrolled in symptom monitoring, completed at least one ePRO survey, and were reachable by phone for the interview were included. The ePRO surveys assessed 10 symptoms, including validated Patient-Reported Outcome Common Terminology Criteria for Adverse Events (PRO-CTCAE) measures and thoracic surgery-specific questions. Surveys, offered via web-based and automated telephone options, were administered for four weeks post-discharge with alerts sent to clinicians for concerning symptoms. The interviews were guided by the Capability, Opportunity, Motivation model for behavior change (COM-B) and examined factors that influenced patients' completion of ePRO surveys post-discharge. Team members independently coded interviews and identified themes, informed by COM-B. We report descriptive statistics (demographics, number of surveys completed) and themes organized by COM-B components. RESULTS: Of 28 patients invited, 25 (89%) completed interviews from July to October 2022. Participants were a median 58 years, 56% female, 80% White, and 56% had a history of malignancy. They completed 131/150 (87%) possible ePRO surveys. For capability, participants reported building ePROs into their routine and having the skills and knowledge, but lacking physical and emotional energy, to complete ePROs. For opportunity, participants identified the ease and convenience of accessing ePROs and providers' validation of ePROs. Motivators were perceived benefits of a deepening connection to their clinical team, improved symptom management for themselves and others, and self-reflection about their recovery. Factors limiting motivation included lack of clarity about the purpose of ePROs and a disconnect between symptom items and individual recovery experience. CONCLUSIONS: Patients described being motivated to complete ePROs when reinforced by clinicians and considered ePROs as valuable to their post-discharge experience. Future work should enhance ePRO patient education, improve provider alerts and communications about ePROs, and integrate options to capture patients' complex health journeys.

People who undergo thoracic surgery often experience pain and other symptoms while recovering at home. These symptoms can be severe and may reduce overall quality of life and potentially result in some patients returning to the hospital for future treatment. Electronic Patient-Reported Outcomes can be used as a method for having patients regularly track and report any symptoms they experience while at home, and how severe those symptoms are, using digital technology such as an online survey or automated phone survey. Surgical care team members may then follow up with patients about their symptoms. More information was needed about the patient experience with completing these surveys about their symptoms. In this study, we interviewed patients who had completed Electronic Patient-Reported Outcomes after thoracic surgery to understand what may (or may not) have impelled them to participate and to learn how to improve the use of these surveys for patients. This study found that patients generally felt they were able to complete the symptom surveys. Key motivators included feeling more connected to their surgeon by completing the symptom surveys and having the opportunity to reflect on how their recovery was going at home. However, patients also discussed not having a clear understanding of the purpose of the symptom surveys and how their responses might affect their care. The study findings highlight the need for improved patient education and indicate that improvements to the survey questions and to how surgeons review patients' responses may be needed.

Clinical Decision Support for Surgery: A Mixed Methods Study on Design and Implementation Perspectives From Urologists.

OBJECTIVE: To assess urologist attitudes toward clinical decision support (CDS) embedded into the electronic health record (EHR) and define design needs to facilitate implementation and impact. With recent advances in big data and artificial intelligence (AI), enthusiasm for personalized, data-driven tools to improve surgical decision-making has grown, but the impact of current tools remains limited. METHODS: A sequential explanatory mixed methods study from 2019 to 2020 was performed. First, survey responses from the 2019 American Urological Association Annual Census evaluated attitudes toward an automatic CDS tool that would display risk/benefit data. This was followed by the purposeful sampling of 25 urologists and qualitative interviews assessing perspectives on CDS impact and design needs. Bivariable, multivariable, and coding-based thematic analysis were applied and integrated. RESULTS: Among a weighted sample of 12,366 practicing urologists, the majority agreed CDS would help decision-making (70.9%, 95% CI 68.7%-73.2%), aid patient counseling (78.5%, 95% CI 76.5%-80.5%), save time (58.1%, 95% CI 55.7%-60.5%), and improve patient outcomes (42.9%, 95% CI 40.5%-45.4%). More years in practice was negatively associated with agreement (P <.001). Urologists described how CDS could bolster evidence-based care, personalized medicine, resource utilization, and patient experience. They also identified multiple implementation barriers and provided suggestions on form, functionality, and visual design to improve usefulness and ease of use. CONCLUSION: Urologists have favorable attitudes toward the potential for clinical decision support in the EHR. Smart design will be critical to ensure effective implementation and impact.

Benefits, Challenges, and Opportunities in Addressing Medicaid Beneficiaries' Non-Medical Risks to Health: A Qualitative Analysis.

CONTEXT: North Carolina's Healthy Opportunities Pilots (HOP) is a Medicaid 1115 Waiver program that seeks to address nonmedical risks to health for Medicaid beneficiaries through multisector collaboration. Among other stakeholders, HOP involves collaboration between human services organizations that deliver interventions, network leads, which establish and oversee the human services organizations within a region of the state. OBJECTIVE: To understand how employees at human services organizations and network leads prepared to deliver HOP services. DESIGN: Qualitative analysis of semistructured interviews. Interviews were conducted between April and June 2022. Interviews were recorded, transcribed verbatim, coded thematically, and analyzed using a conceptual model derived from the consolidated framework for implementation research. SETTING: Organizations within North Carolina counties participating in HOP. PARTICIPANTS: Employees of human services and network lead organizations across all 3 HOP regions of North Carolina. RESULTS: The researchers interviewed 37 participants. Overall, organizations experienced benefits from HOP participation, including capacity-building resources, flexibility in allocating resources, and creating community-wide enthusiasm for addressing nonmedical risks to health. There were also key challenges. These included the time needed to build capacity, adjustments to the work processes and regulations inherent to multisector collaboration, geographic variation in availability of services to offer, and the difficulty of addressing different needs. Finally, participants recognized substantial opportunities that HOP presented, including membership in a more extensive network, exposure to a learning community, and a more sustainable funding source. CONCLUSIONS: The perspectives of individuals preparing to deliver HOP services offer important lessons for those developing and implementing large-scale programs that can address nonmedical threats to health.

A Cost Analysis of Rethink the Strip: De-implementing a Low-value Practice in Primary Care.

BACKGROUND: Routine self-monitoring of blood glucose is a low-value practice that provides limited benefit for patients with non-insulin-treated type 2 diabetes mellitus. OBJECTIVES: We estimated the costs of Rethink the Strip (RTS), a multistrategy approach to the de-implementation of self-monitoring of blood glucose in primary care. RESEARCH DESIGN: RTS was conducted among 20 primary care clinics in North Carolina. We estimated the non-site-based and site-based costs of the 5 RTS strategies (practice facilitation, audit and feedback, provider champions, educational meetings, and educational materials) from the analytic perspective of an integrated health care system for 12 and 27-month time horizons. Material costs were tracked through project records, and personnel costs were assessed using activity-based costing. We used nationally based wage estimates. RESULTS: Total RTS costs equaled $68,941 for 12 months. Specifically, non-site-based costs comprised $16,560. Most non-site-based costs ($11,822) were from the foundational programming and coding updates to the electronic health record data to develop the audit and feedback reports. The non-site-based costs of educational meetings, practice facilitation, and educational materials were substantially lower, ranging between ~$400 and $1000. Total 12-month site-based costs equaled $2569 for a single clinic (or $52,381 for 20 clinics). Educational meetings were the most expensive strategy, averaging $1401 per clinic. The site-based costs for the 4 other implementation strategies were markedly lower, ranging between $51 for educational materials and $555 for practice facilitation per clinic. CONCLUSIONS: This study provides detailed cost information for implementation strategies used to support evidence-based programs in primary care clinics.

Electronic Health Record Use and Perceptions among Urologic Surgeons.

OBJECTIVE: Electronic health records (EHRs) have become widely adopted with increasing emphasis on improving care delivery. Improvements in surgery may be limited by specialty-specific issues that impact EHR usability and engagement. Accordingly, we examined EHR use and perceptions in urology, a diverse surgical specialty. METHODS: We conducted a national, sequential explanatory mixed methods study. Through the 2019 American Urological Association Census, we surveyed urologic surgeons on EHR use and perceptions and then identified associated characteristics through bivariable and multivariable analyses. Using purposeful sampling, we interviewed 25 urologists and applied coding-based thematic analysis, which was then integrated with survey findings. RESULTS: Among 2,159 practicing urologic surgeons, 2,081 (96.4%) reported using an EHR. In the weighted sample (n = 12,366), over 90% used the EHR for charting, viewing results, and order entry with most using information exchange functions (59.0-79.6%). In contrast, only 35.8% felt the EHR increases clinical efficiency, whereas 43.1% agreed it improves patient care, which related thematically to information management, administrative burden, patient safety, and patient-surgeon interaction. Quantitatively and qualitatively, use and perceptions differed by years in practice and practice type with more use and better perceptions among more recent entrants into the urologic workforce and those in academic/multispecialty practices, who may have earlier EHR exposure, better infrastructure, and more support. CONCLUSION: Despite wide and substantive usage, EHRs engender mixed feelings, especially among longer-practicing surgeons and those in lower-resourced settings (e.g., smaller and private practices). Beyond reducing administrative burden and simplifying information management, efforts to improve care delivery through the EHR should focus on surgeon engagement, particularly in the community, to boost implementation and user experience.

Patient and Provider Perception of Transurethral Resection of Bladder Tumor vs Chemoablation for Nonmuscle-invasive Bladder Cancer Treatment.

PURPOSE: The aim of this mixed methods study was to investigate patient and provider perceptions of repeat transurethral resection of bladder tumors to improve counseling as new nonsurgical treatment modalities for nonmuscle-invasive bladder cancer emerge. MATERIALS AND METHODS: Quantitative data were collected via a web-based survey through the Bladder Cancer Advocacy Network of patients with nonmuscle-invasive bladder cancer who had undergone at least 1 transurethral resection of bladder tumor. Bivariable and multivariable analyses were performed to evaluate associations of patient demographics and clinical variables with treatment preference. Qualitative data were collected with 60 in-depth telephone interviews with patients (n=40) and urologists (n=20) to understand experiences with bladder cancer and transurethral resection of bladder tumor. Telephone interviews were conducted by trained qualitative experts. Transcripts were imported into Dedoose to facilitate analysis. RESULTS: Survey data of 352 patients showed 210 respondents (60%) preferred repeat transurethral resection of bladder tumor while 142 (40%) preferred intravesical chemoablation. Patients who preferred repeat transurethral resection of bladder tumor were more likely to prioritize initial treatment effectiveness (63%), whereas those who preferred chemoablation prioritized risk of recurrence (55%). Variables associated with a preference for intravesical chemoablation included U.S. residence (OR=2; 95% CI 1.1, 3.8), or if they expressed their reason for treatment preference as priority of recurrence risk over effectiveness (OR=14.6; 95% CI 7.4, 28.5). Predominant interview themes varied across participants, with patients but not urologists emphasizing the emotional toll of the procedure along with the need for improved counseling regarding recurrence, terminology, and cancer-related signs and symptoms. CONCLUSIONS: Differences exist in the way patients and urologists perceive repeat transurethral resection of bladder tumor for bladder cancer. Understanding transurethral resection of bladder tumor perception will aid in shared decision making as novel treatments emerge for nonmuscle-invasive bladder cancer.

Community Engagement in Implementation Science: the Impact of Community Engagement Activities in the DECIPHeR Alliance.

Background: The translation of evidence-based interventions into practice settings remains challenging. Implementation science aims to bridge the evidence-to-practice gap by understanding multilevel contexts and tailoring evidence-based interventions accordingly. Engaging community partners who possess timely, local knowledge is crucial for this process to be successful. The Disparities Elimination through Coordinated Interventions to Prevent and Control Heart and Lung Disease Risk (DECIPHeR) Alliance aims to address cardiopulmonary health disparities by engaging diverse community partners to improve the implementation of evidence-based interventions. The goal of the Community Engagement Subcommittee is to strengthen community engagement practice across DECIPHeR. This paper presents the subcommittee's "Why We Engage Communities" statement that outlines why community engagement is critical for implementation science. The paper also provides case examples of DECIPHeR community engagement activities. Methods: To develop the "Why We Engage Communities" statement, we conducted a literature review, surveyed subcommittee members to assess the importance of community engagement in their work, and integrated community partner feedback. We synthesize the findings into three key themes and present examples of community engagement activities and their impact across DECIPHeR projects. Results: The statement presents three themes that illustrate why community engagement increases the impact of implementation and health equity research. Community engagement (1) engages local knowledge and expertise, (2) promotes authentic relationships, and (3) builds community and researcher capacity. The statement provides a guiding framework for strengthening DECIPHeR research and enhancing community partnerships. Conclusion: Community engagement can improve the implementation of evidence-based interventions across diverse settings, improving intervention effectiveness in underserved communities and furthering health equity.

When Less Is More: Identifying Patients With Type 2 Diabetes Engaging in Unnecessary Blood Glucose Monitoring.

This study examined whether certain patient characteristics are associated with the prescribing of self-monitoring of blood glucose for patients with type 2 diabetes who are not using insulin and have well-controlled blood glucose. Against recommendations, one-third of the patient sample from a large health network in North Carolina (N = 9,338) received a prescription for testing supplies (i.e., strips or lancets) within the prior 18 months. Women, African Americans, individuals prescribed an oral medication, nonsmokers, and those who were underweight or normal weight all had greater odds of receiving such a prescription. These results indicate that providers may have prescribing tendencies that are potentially biased against more vulnerable patient groups and contrary to guidelines.

Clinical Team Response to the Impact of COVID-19 on Diabetes Self-Management: Findings From a Qualitative Study.

The aims of this study were to explore providers' perceptions of how COVID-19 affected patients' psychological wellbeing and diabetes self-care and discover how providers responded to sustain and improve patients' psychological health and diabetes management during the pandemic. Twenty-four semi-structured interviews were completed with primary care providers (n=14) and endocrine specialty clinicians (n=10) across sixteen clinics in North Carolina. Interview topics included: (1) current glucose monitoring approaches and diabetes management strategies for people with diabetes (2) barriers and unintended consequences encountered with respect to diabetes self-management, and (3) innovative strategies developed to overcome barriers. Interview transcripts were coded using qualitative analysis software and analyzed to identify cross-cutting themes and differences between participants. Primary care providers and endocrine specialty clinicians reported that people with diabetes experienced increased mental health symptoms, increased financial challenges and positive and negative changes in self-care routines due to COVID-19. To offer support, primary care providers and endocrine specialty providers focused discussions on lifestyle management and utilized telemedicine to connect with patients. Additionally, endocrine specialty clinicians helped patients access financial assistance programs. Findings indicate that people with diabetes experienced unique challenges to self-management during the pandemic and providers responded with targeted support strategies. Future research should explore the effectiveness of these provider interventions as the pandemic continues to evolve.

Developing a Primary Care-Focused Intervention to Engage Patients With Osteoarthritis in Physical Activity: A Stakeholder Engagement Qualitative Study.

Physical activity (PA) is important for managing osteoarthritis (OA), but many patients are inactive. Research is needed on strategies to leverage clinical encounters to engage patients in PA. Guided by the socioecological model of health behavior, this study aimed to engage stakeholders in the process of refining an Osteoarthritis Physical Activity Care Pathway (OA-PCP). Six focus groups and seven individual interviews were conducted with key stakeholders. Focus groups were specific to stakeholder roles and included patients with OA, support partners, and clinic personnel (n = 6 focus groups). Interview participants were local and national PA program representatives (n = 7 interviews). Data were analyzed by thematic analysis. Themes identified in the data included ways the OA-PCP can help patients with OA address challenges to PA engagement, strategies for connecting patients with PA resources, methods for implementing OA-PCP into clinical settings and potential use of PA trackers in the OA-PCP program. Stakeholders' comments were summarized into key recommendations for OA-PCP. Some recommendations reinforced and led to refinements in planned aspects of OA-PCP, including tailoring to individual patients, involvement of a support partner, and addressing pain with PA. Other recommendations resulted in larger changes for OA-PCP, including the addition of three email- or mail-based contacts and not requiring use of a PA tracker. The refined OA-PCP program is being evaluated in an exploratory trial, with the ultimate goal of establishing a PA program for OA that can be successfully implemented in clinical settings.

Implementation of a workplace physical activity intervention in child care: process evaluation results from the Care2BWell trial.

Care2BWell was designed to evaluate the efficacy of Healthy Lifestyles (HL), a worksite health promotion intervention to increase child care workers' physical activity. The purpose of this study was to use process evaluation to describe the implementation of HL and determine if different levels of implementation are associated with changes in workers' physical activity. Data were collected from 250 workers randomized to HL, a 6 month, multilevel intervention that included an educational workshop followed by three 8 week campaigns that included self-monitoring and feedback, raffle incentive, social support, and center director coaching. Process evaluation data collection included direct observation, self-reported evaluation surveys, website analytics and user test account data, tracking databases and semi-structured interviews. Implementation scores were calculated for each intervention component and compared at the center and individual levels. Nearly a third of workers never self-monitored and few (16%) met self-monitoring goals. Only 39% of centers engaged with the social support component as intended. Raffle and social support components were perceived as the least useful. Implementation varied widely by center (25%-76%) and individual workers (0%-94%). No within- or between-group differences for high compared to low implementation groups for change in physical activity were evident. Interview themes included limited sustainability, competing priorities, importance of social support, and desire for a more intensive, personalized intervention. Wide variation in implementation may explain limited effects on intervention outcomes. Future worksite interventions designed for child care workers can use these findings to optimize health promotion in this setting.

Osteoarthritis physical activity care pathway (OA-PCP): results of a feasibility trial.

BACKGROUND: To obtain information on feasibility and acceptability, as well as preliminary data on efficacy, of an Osteoarthritis Physical activity Care Pathway (OA-PCP). METHODS: This was a single group pilot study involving 60 participants with symptomatic, physician diagnosed knee or hip OA, recruited from primary care clinics. Participants self-reported completing less than 150 min per week of moderate-to-vigorous physical activity (MVPA) at baseline. The 3-month OA-PCP intervention involved 3 physical activity (PA) coaching calls (focused on goal setting), three check-in emails and linkage with community-based or online resources to support PA. Efficacy outcomes were collected at baseline and 4-month follow-up. The primary efficacy outcome was minutes of MVPA, assessed via accelerometer. Secondary outcomes included minutes of light intensity activity, sedentary minutes, step counts, and Western Ontario and McMaster Universities (WOMAC) pain and function subscales. Participants were also asked to rate the helpfulness of the OA-PCP intervention on a scale of 0-10. Differences in efficacy outcomes between baseline and 4-month follow-up were assessed using paired t-tests. RESULTS: Among participants beginning the study, 88% completed follow-up assessments and ≥ 90% completed each of the intervention calls. Average daily minutes of MVPA was 8.0 at baseline (standard deviation (SD) = 9.9) and 8.9 at follow-up (SD = 12.1, p = 0.515). There were no statistically significant changes in light intensity activity, sedentary time or step counts. The mean WOMAC pain score improved from 8.1 (SD = 3.6) at baseline to 6.2 (SD = 3.8) at follow-up (p < 0.001); the mean WOMAC function score improved from 26.2 (SD = 13.2) to 20.2 (SD = 12.5; p < 0.001). The mean rating of helpfulness was 7.6 (SD = 2.5). CONCLUSIONS: Results supported the feasibility and acceptability of the study, and participants reported clinically relevant improvements in pain and function. PA metrics did not improve substantially. Based on these results and participant feedback, modifications including enhanced self-monitoring are being made to increase the impact of the OA-PCP intervention on PA behavior. TRIAL REGISTRATION: NCT03780400, December 19, 2018.

Performance Measures Based on How Adults With Cancer Feel and Function: Stakeholder Recommendations and Feasibility Testing in Six Cancer Centers.

PURPOSE: Patient-reported outcome measures (PROMs) that assess how patients feel and function have potential for evaluating quality of care. Stakeholder recommendations for PRO-based performance measures (PMs) were elicited, and feasibility testing was conducted at six cancer centers. METHODS: Interviews were conducted with 124 stakeholders to determine priority symptoms and risk adjustment variables for PRO-PMs and perceived acceptability. Stakeholders included patients and advocates, caregivers, clinicians, administrators, and thought leaders. Feasibility testing was conducted in six cancer centers. Patients completed PROMs at home 5-15 days into a chemotherapy cycle. Feasibility was operationalized as ≥ 75% completed PROMs and ≥ 75% patient acceptability. RESULTS: Stakeholder priority PRO-PMs for systemic therapy were GI symptoms (diarrhea, constipation, nausea, vomiting), depression/anxiety, pain, insomnia, fatigue, dyspnea, physical function, and neuropathy. Recommended risk adjusters included demographics, insurance type, cancer type, comorbidities, emetic risk, and difficulty paying bills. In feasibility testing, 653 patients enrolled (approximately 110 per site), and 607 (93%) completed PROMs, which indicated high feasibility for home collection. The majority of patients (470 of 607; 77%) completed PROMs without a reminder call, and 137 (23%) of 607 completed them after a reminder call. Most patients (72%) completed PROMs through web, 17% paper, or 2% interactive voice response (automated call that verbally asked patient questions). For acceptability, > 95% of patients found PROM items to be easy to understand and complete. CONCLUSION: Clinicians, patients, and other stakeholders agree that PMs that are based on how patients feel and function would be an important addition to quality measurement. This study also shows that PRO-PMs can be feasibly captured at home during systemic therapy and are acceptable to patients. PRO-PMs may add value to the portfolio of PMs as oncology transitions from fee-for-service payment models to performance-based care that emphasizes outcome measures.

A Multiple Case Study of Coordinated Care for Children with IBD through Caregiver Interviews.

INTRODUCTION: Effective care coordination is critical to manage unpredictable complications of conditions such as pediatric inflammatory bowel disease (IBD) that have a relapsing and remitting course. Our objective was to explore perspectives of care coordination following emergency department (ED) visits by children with IBD, because these may indicate deficient care coordination. METHODS: Using a multiple case study approach, we sought perspectives through semi-structured interviews of caregivers (parents, primary care providers, and gastroenterologists) for children with IBD who had a recent ED visit in either of two large pediatric referral centers in the southeastern US. We used criterion sampling to identify eligible participants through a medical record report of ED visits, and iterative sampling concurrent with analysis until no new themes were identified. Interviews were transcribed verbatim, and transcripts were coded using directed content analysis to identify emergent themes. RESULTS: From twenty-six interviews, three major themes emerged: perceptions of appropriate expertise, desire for integration of information and services, and making assumptions instead of engaging. Participants describe distinct roles for primary care and gastroenterology providers and recognize communication and information barriers to better coordination. Some parents and gastroenterologists perceive challenges to engaging primary care providers. Common recommendations include explicit guidance from gastroenterologists to primary care providers and methods for direct communication. DISCUSSION: Stakeholders describe common barriers and facilitators for effective care coordination, but some express beliefs about provider roles that could hinder improvement efforts. Tools to support asynchronous communication and shared planning may improve coordination and care quality for complications of IBD.

Feasibility and acceptability of a Mediterranean-style diet intervention to reduce cardiovascular risk for low income Hispanic American women.

OBJECTIVE: Evidence for the cardioprotective effects of a Mediterranean-style (Med-style) diet is strong, however few Med-style dietary interventions have been developed for and tested among Hispanic Americans (HAs), especially younger HAs of reproductive age whose dietary habits may strongly influence dietary intake for all family members. DESIGN: We adapted a previously tested and evidence-informed lifestyle intervention to reduce CVD risk and evaluated its feasibility, acceptability, and effects on self-reported lifestyle behaviors in this study enrolling low-income HA women attending a Title X family planning clinic in eastern North Carolina. The 3-month long intervention, given to all participants, promoted a Med-style dietary pattern with a focus on increasing consumption of foods commonly consumed by HA that have high quality dietary fats (polyunsaturated and monounsaturated fats primarily from plant sources and fish) and carbohydrates (fruits, vegetables, and whole grains). The intervention also recommended increasing physical activity and was given during 2 face-to-face counseling sessions and 2 telephone counseling sessions. Major outcomes were engagement with study activities and intervention acceptability; lifestyle behavior change at 3-month follow-up is also reported. RESULTS: Baseline characteristics (n = 36) were: mean age 33 years, 35 (97%) without health insurance, 32 (89%) born in Mexico, and mean BMI 30 kg/m2. Engagement was high among the 36 participants with 33 (92%) completing the intervention and follow-up measures. At follow-up, most participants thought the intervention was helpful (range: 85-100%) and acceptable (100% agreed 'I would recommend the program to others'). The mean dietary fat quality score improved by 0.5 units (95% CI: 0.0-1.1) and the mean fruit-vegetable servings/day improved by 0.7/day (95% CI: 0.1-1.3). CONCLUSION: Intervention engagement and acceptability were high and there was improvement in self-reported dietary behaviors. This type of Med-style dietary pattern intervention should be evaluated in randomized trials enrolling HAs at risk for CVD.

Health Literacy, Glycemic Control, and Physician-Advised Glucose Self-Monitoring Use in Type 2 Diabetes.

OBJECTIVE: To measure the association between health literacy and both patient-reported and clinical outcomes in patients with non-insulin-treated type 2 diabetes. RESEARCH DESIGN AND METHODS: We surveyed patients with non-insulin-treated type 2 diabetes (n = 448) from 15 primary care practices. The association between health literacy and patient-reported and clinical outcomes, including numeracy of self-monitoring of blood glucose (SMBG) use, how often physicians advised patients to conduct SMBG testing, and glycemic control (as measured by A1C), was investigated. RESULTS: Study participants included 448 patients with non-insulin-treated type 2 diabetes located within central North Carolina. Participants with limited health literacy had poorer glycemic control (A1C 7.7 ± 1.1% vs. 7.5 ± 1.0%, P = 0.016) despite using SMBG testing more frequently (daily SMBG testing 49.3 vs. 30.7%, P = 0.001) compared to individuals with adequate health literacy. The difference in how often physicians advised patients to conduct SMBG testing between limited and adequate health literacy groups was not significant (P = 0.68). CONCLUSION: Limited health literacy was associated with poorer glycemic control and an increased frequency of SMBG testing in patients with non-insulin-treated type 2 diabetes. There was no significant difference in how often physicians advised patients to conduct SMBG testing between patients with limited and adequate health literacy.

Crohn's and Colitis Foundation of America Partners Patient-Powered Research Network: Patient Perspectives on Facilitators and Barriers to Building an Impactful Patient-Powered Research Network.

BACKGROUND: To build a Patient-Powered Research Networks (PPRN) that prioritizes the needs of its members who have inflammatory bowel diseases (IBD), we sought to better understand patients' preferences for what are the essential features that will facilitate and sustain engagement. METHODS: We conducted a two-phase qualitative study. Seven focus groups involving 62 participants with IBD were conducted (phase 1). Focus group results informed the phase 2 cognitive interviews, which included 13 phone interviews. Topics included experiences with IBD and research, PPRN engagement, patient-generated health data, and resources/tools to facilitate self-management. All focus groups and interviews were digitally recorded, transcribed verbatim, and analyzed in ATLAS.ti 7.5. Thematic categories were derived from the data, and codes were grouped into emergent themes and relationships. RESULTS: Four major themes emerged through inductive coding: (1) the impact of knowing; (2) participation barriers and challenges; (3) engagement and collaboration; and (4) customizable patient portal features/functionalities. Participants were motivated to participate in the PPRN because the knowledge gained from research studies would benefit both society and the individual. Main concerns included credibility of online resources, pharmaceutical industry profiting from their data, data security, and participation expectations. Participants wanted a true and equal partnership in every phase of building a PPRN. Participants felt it was important to have access to personal health records and be able to track health status and symptoms. CONCLUSION: Partnering with participants throughout PPRN development was critical to understanding the needs and preferences of patients with IBDs and for shaping engagement strategies and the portal's design.

Evaluating Shared Decision Making for Lung Cancer Screening.

Importance: The US Preventive Services Task Force recommends that shared decision making (SDM) involving a thorough discussion of benefits and harms should occur between clinicians and patients before initiating lung cancer screening (LCS) with low-dose computed tomography. The Centers for Medicare & Medicaid Services require an SDM visit using a decision aid as a prerequisite for LCS coverage. However, little is known about how SDM about LCS occurs in practice. Objective: To assess the quality of SDM about the initiation of LCS in clinical practice. Design, Setting, and Participants: A qualitative content analysis was performed of transcribed conversations between primary care or pulmonary care physicians and 14 patients presumed to be eligible for LCS, recorded between April 1, 2014, and March 1, 2018, that were identified within a large database. Main Outcomes and Measures: Independent observer ratings of communication behaviors of physicians using the OPTION (Observing Patient Involvement in Decision Making) scale, a validated 12-item measure of SDM (total score, 0-100 points, where 0 indicates no evidence of SDM and 100 indicates evidence of SDM at the highest skill level); time spent discussing LCS during visits; and evidence of decision aid use. Results: A total of 14 conversations about initiating LCS were identified; 9 patients were women, and 5 patients were men; the mean (SD) patient age was 63.9 (5.1) years; 7 patients had Medicare, and 8 patients were current smokers. Half the conversations were conducted by primary care physicians. The mean total OPTION score for the 14 LCS conversations was 6 on a scale of 0 to 100 (range, 0-17). None of the conversations met the minimum skill criteria for 8 of the 12 SDM behaviors. Physicians universally recommended LCS. Discussion of harms (such as false positives and their sequelae or overdiagnosis) was virtually absent. The mean total visit length of a discussion was 13:07 minutes (range, 3:48-27:09 minutes). The mean time spent discussing LCS was 0:59 minute (range, 0:16-2:19 minutes), or 8% of the total visit time (range, 1%-18%). There was no evidence that decision aids or other patient education materials for LCS were used. Conclusions and Relevance: In this small sample of recorded encounters about initiating LCS, the observed quality of SDM was poor and explanation of potential harms of screening was virtually nonexistent. Time spent discussing LCS was minimal, and there was no evidence that decision aids were used. Although these findings are preliminary, they raise concerns that SDM for LCS in practice may be far from what is intended by guidelines.