"Once I take that one bite": the consideration of harm reduction as a strategy to support dietary change for patients with diabetes.

BACKGROUND: Despite well-established guidelines to treat diabetes, many people with diabetes struggle to manage their disease. For many, this struggle is related to challenges achieving nutrition-related lifestyle changes. We examined how people with diabetes describe barriers to maintaining a healthy diet and considered the benefits of using a harm reduction approach to assist patients to achieve nutrition-related goals. METHODS: This is a secondary analysis of 89 interviews conducted with adults who had type 1 or type 2 diabetes. Interviews were analyzed using a content analysis approach. Themes regarding food or diet were initially captured in a "food" node. Data in the food node were then sub-coded for this analysis, again using a content analysis approach. RESULTS: Participants frequently used addiction language to talk about their relationship with food, at times referring to themselves as "an addict" and describing food as "their drug." Participants perceived their unhealthy food choices either as a sign of weakness or as "cheating." They also identified food's ability to comfort them and an unwillingness to change as particular challenges to sustaining a healthier diet. CONCLUSION: Participants often described their relationship with food through an addiction lens. A harm reduction approach has been associated with positive outcomes among those with substance abuse disorder. Patient-centered communication incorporating the harm reduction model may improve the patient-clinician relationship and thus improve patient outcomes and quality-of-life while reducing health-related stigma in diabetes care. Future work should explore the effectiveness of this approach in patients with diabetes. TRIAL REGISTRATION: Registered on ClinicalTrials.gov, NCT02792777. Registration information submitted 02/06/2016, with the registration first posted on the ClinicalTrials.gov website 08/06/2016. Data collection began on 29/04/2016.

Patient Markers of Successful Diabetes Management.

PURPOSE: For individuals with diabetes, diabetes health status may not align with A1C targets. Patients may use nonclinical targets when assessing their diabetes management success. Identifying these targets is important in developing patient-centered management plans. The purpose of this study was to identify patient markers of successful diabetes management among patients in an urban academic health system. METHODS: A secondary analysis of semistructured interviews was completed with 89 adults with type 1 or type 2 diabetes. Participants had a recent diabetes-related emergency department (ED) visits or hospitalization or were primary care patients with an A1C >7.5%. Interviews were conducted to saturation. Demographic data were collected via self-report and electronic medical records. Interviews were analyzed using conventional content analysis. This analysis focused on patient perceptions of successful management coded to "measuring management success." RESULTS: Although most participants cited A1C or blood glucose as a marker of successful diabetes management, they had varied understanding of these metrics. Most used a combination of targets from the following categories: 1) A1C, blood glucose, and numbers; 2) engagement in medical care; 3) taking medication and medication types; 4) symptoms; 5) diet, exercise, and weight; and 6) stress management and social support. CONCLUSION: Individuals not meeting glycemic goals and/or with recent diabetes-related ED visits or hospitalizations had varied understanding of A1C and blood glucose targets. They use multiple additional markers of successful management and had a desire for management discussions that incorporate these markers. These measures should be incorporated into their care plans along with clinical targets.

"I had no other choice but to catch it too": the roles of family history and experiences with diabetes in illness representations.

BACKGROUND: A family history of diabetes and family members' experiences with diabetes may influence individuals' beliefs and expectations about their own diabetes. No qualitative studies have explored the relationship between family history and experiences and individuals' diabetes illness representations. METHODS: Secondary data analysis of 89 exploratory, semi-structured interviews with adults with type 1 or type 2 diabetes seeking care in an urban health system. Participants had a recent diabetes-related ED visit/hospitalization or hemoglobin A1c > 7.5%. Interviews were conducted until thematic saturation was achieved. Demographic data were collected via self-report and electronic medical record review. Interviews were audio-recorded, transcribed, and coded using a conventional content analysis approach. References to family history and family members' experiences with diabetes were analyzed using selected domains of Leventhal's Common Sense Model of Self-Regulation. RESULTS: Participants cited both genetic and behavioral family history as a major cause of their diabetes. Stories of relatives' diabetes complications and death figured prominently in their discussion of consequences; however, participants felt controllability over diabetes through diet, physical activity, and other self-care behaviors. CONCLUSIONS: Findings supported an important role of family diabetes history and experience in development of diabetes illness representations. Further research is needed to expand our understanding of the relationships between these perceptions, self-management behaviors, and outcomes. Family practice providers, diabetes educators and other team members should consider expanding assessment of current family structure and support to also include an exploration of family history with diabetes, including which family members had diabetes, their self-care behaviors, and their outcomes, and how this history fits into the patient's illness representations.

The power of the group: comparison of interviews and group concept mapping for identifying patient-important outcomes of care.

BACKGROUND: Data are limited regarding how to effectively and efficiently identify patient priorities for research or clinical care. Our goal was to compare the comprehensiveness and efficiency of group concept mapping (GCM), a group participatory method, to interviews for identifying patient goals when seeking care. METHODS: We engaged patients with moderately- to poorly-controlled diabetes mellitus in either GCM or an individual interview. The primary outcome was the comprehensiveness of GCM brainstorming (the first stage of GCM) as compared to interviews for eliciting patient-important outcomes (PIOs) related to seeking care. Secondary outcomes included 1) comprehensiveness of GCM brainstorming and interviews compared to a master list of PIOs and 2) efficiency of GCM brainstorming, the entire GCM process and interviews. RESULTS: We engaged 89 interview participants and 52 GCM participants (across 3 iterations of GCM) to identify outcomes most important to patients when making decisions related to diabetes management. We identified 26 PIOs in interviews, 33 PIOs in the first GCM brainstorming session, and 38 PIOs across all three GCM brainstorming sessions. The initial GCM brainstorming session identified 77% (20/26) of interview PIOs, and all 3 GCM brainstorming sessions combined identified 88% (23/26). When comparing GCM brainstorming and interviews to the master list of PIOs, the initial GCM brainstorming sessions identified 80% (33/41), all 3 GCM brainstorming sessions identified 93% (38/41) and interviews identified 63% (26/41) of all PIOs. Compared to interviews, GCM brainstorming required less research team time, more patient time, and had a lowest cost. The entire GCM process still required less research team time than interviews, though required more patient time and had a higher cost than interviews. CONCLUSIONS: GCM brainstorming is a powerful tool for effectively and efficiently identifying PIOs in certain scenarios, though it does not provide the breadth and depth of individual interviews or the higher level conceptual organization of the complete process of GCM. Selection of the optimal method for patient engagement should include consideration of multiple factors including depth of patient input desired, research team expertise, resources, and the population to be engaged. TRIAL REGISTRATION: Registered on ClinicalTrials.gov , NCT02792777. Registration information submitted 6/2/2016, with the registration first posted on the ClinicalTrials.gov website 6/8/2016. Data collection began on 4/29/2016.

Use of Group Concept Mapping to Identify Patient Domains of Uncertainty That Contribute to Emergency Department Use.

INTRODUCTION: Prior research suggests that uncertainty related to symptoms is a driver of emergency department (ED) use, and that patients often leave the ED with uncertainty not being addressed. Our objective was to engage patients to identify domains that contribute to feelings of uncertainty and decisions to use the ED. METHODS: We used Group Concept Mapping, a quasi-qualitative/quasi-quantitative method, to elicit patients' views on how uncertainty related to experiencing symptoms contributes to decisions to access the ED. Purposive sampling was used to recruit participants who either sought treatment at the ED twice within a 30-day period, or visited both the ED and a primary care provider at least once within the past year. RESULTS: Thirty-four participants engaged in two rounds of Group Concept Mapping during which participants participated in structured brainstorming of ideas, followed by ranking and clustering of ideas into domains. The first round generated 47 idea statements reflecting uncertainty about consequences, severity, emergency room services, primary care options, finances, and psychologic concerns. The second round generated 52 idea statements reflecting uncertainty about self-management, causation, diagnosis and treatment plan, trust in the provider and institution, accessibility, and alternative care options. DISCUSSION: Factors that contribute to uncertainty and decision-making about ED use are both intrinsic (ie, cause, symptom severity) and extrinsic (ie, finances, accessibility). These domains can inform approaches to measure the uncertainty that patients experience, and to design and test interventions for nurses and other providers to help manage patient uncertainty during acute illness.

Patient-Identified Needs Related to Seeking a Diagnosis in the Emergency Department.

STUDY OBJECTIVE: Although diagnosis is a valuable tool for health care providers, and often the reason patients say they are seeking care, it may not serve the same needs for patients as for providers. The objective of this study is to explore what patients specifically want addressed when seeking a diagnosis at their emergency department (ED) visit. We propose that understanding these needs will facilitate a more patient-centered approach to acute care delivery. METHODS: This qualitative study uses semistructured telephone interviews with participants recently discharged from the ED of a large urban academic teaching hospital to explore their expectations of their ED visit and postdischarge experiences. RESULTS: Thirty interviews were analyzed. Many participants reported wanting a diagnosis as a primary reason for seeking emergency care. When further asked to identify the functions of a diagnosis, they described wanting an explanation for their symptoms, treatment and guidance for symptoms, and clear communication about testing, treatment, and diagnosis. For many, a diagnosis was viewed as a necessary step toward achieving these goals. CONCLUSION: Although diagnosis may not be a feasible outcome of every acute care visit, addressing the needs associated with seeking a diagnosis may be achievable. Reframing acute care encounters to focus on addressing specific patient needs, and not just identifying a diagnosis, may lead to more effective transitions home and improved patient outcomes.

Identification of Approaches to Improve Patient Trust in Health Systems: A Group Concept Mapping Study.

EXECUTIVE SUMMARY: Higher levels of institutional trust have been associated with increased preventive healthcare use, greater adherence to treatment plans, and improved overall self-rated health status. However, little attention has been paid to understanding approaches to improve patient institutional trust. This study used group concept mapping to elicit patient perspectives on ways to improve patient trust. Eighteen insured individuals living in Delaware County, Pennsylvania, participated in the concept mapping sessions. Participants first brainstormed in a group setting to develop a list of ideas about how systems could improve trust, then each participant sorted the ideas into thematic domains and rated the statements based on both importance and feasibility. Four primary domains for improving institutional trust emerged: privacy, patient-provider relationship, respect for patients, and health system guidelines. Multiple action items to improve patient trust of the system were provided for each domain, and participants rated the "privacy" domain as the most feasible and important to address.We suggest that future local efforts to build institutional trust implement processes to improve the protection of patient privacy, support patient-provider relationships, and engender respect for patients, and that institutions develop system-level guidelines to support these principles. Next steps involve exploring the importance of these domains across other populations and developing and testing targeted interventions.

Developing Data to Support Effective Coordination of Nonprofit Hospital Community Benefit Investments.

EXECUTIVE SUMMARY: Nonprofit hospitals achieve tax exemption through community benefit investments. The objective of this study was to characterize urban and suburban nonprofit hospitals' community benefit expenditures and to estimate regional per capita community benefit spending relative to community need. Community benefit expenditures, both overall and by subtype, were compared for urban versus suburban nonprofit hospitals in a large metropolitan area, the greater Philadelphia region. Estimated zip code-level per capita expenditures were mapped in the urban core area. We found that urban hospitals report higher overall community benefit expenditures than suburban hospitals yet invest less in community health improvement services, both proportionally and absolutely, despite spending similar proportions on charity care. There is an overlap in hospital-identified community benefit service areas in the urban core, but the degree of overlap is not related to community poverty levels. There is significant variation in zip code-level per capita community benefit expenditures, which does not correlate with community need. Community benefit investments offer the potential to improve community health, yet without regional coordination, the ability to maximize the potential of these investments is limited. This study's findings highlight the need to implement policies that increase transparency, accountability, and regional coordination of community benefit spending.

A Content Analysis of Nonprofit Hospital Community Health Needs Assessments and Community Benefit Implementation Strategies in Philadelphia.

CONTEXT: Nonprofit hospitals are mandated to perform a community health needs assessment, develop an implementation strategy to address community needs, and invest in improving community health through community benefit investments in order to maintain the tax exemptions afforded nonprofit hospitals. OBJECTIVE: We sought to describe the regional health needs identified across community health needs assessments and the portfolio of implementation strategies reported to address those needs. DESIGN: The study provides a content analysis of community health needs assessments and implementation strategies for nonprofit hospitals in one urban region. SETTING: The study focused on nonprofit hospitals in Philadelphia, Pennsylvania. MAIN OUTCOME MEASURES: Community benefit documents were coded to characterize health needs and intervention activities using the 4 health factor categories of the County Health Rankings framework: clinical care, health behaviors, social and economic factors, and physical environment. RESULTS: Hospitals predominantly identified health needs related to access to care, especially mental health and dental care, and insurance coverage and costs of care. In many instances, there is little alignment between needs identified through the community health needs assessments and the reported implementation strategies. Specifically, dental care, behavioral health, substance abuse, social factors, and health care and prescription drug costs were all cited as important community needs but were infrequently targeted by implementation strategies. CONCLUSIONS: Nonprofit hospital community health needs assessments in Philadelphia predominantly identify needs related to access to care and to some extent health behaviors. There is incomplete alignment between the needs identified in hospital assessments and the needs targeted in implementation strategies, underscoring a need for regional coordination in community benefit investments. Improved regional coordination between hospitals serving the region may offer the opportunity to eliminate duplicative efforts and increase the amount of funds available to address unmet needs.

Communicating Diagnostic Uncertainty at Emergency Department Discharge: A Simulation-Based Mastery Learning Randomized Trial.

PURPOSE: There are no standardized approaches for communicating with patients discharged from the emergency department with diagnostic uncertainty. This trial tested efficacy of the Uncertainty Communication Education Module, a simulation-based mastery learning curriculum designed to establish competency in communicating diagnostic uncertainty. METHOD: Resident physicians at 2 sites participated in a 2-arm waitlist randomized controlled trial from September 2019 to June 2020. After baseline (T1) assessment of all participants via a standardized patient encounter using the Uncertainty Communication Checklist (UCC), immediate access physicians received training in the Uncertainty Communication Education Module, which included immediate feedback, online educational modules, a smartphone-based application, and telehealth deliberate practice with standardized patients. All physicians were retested 16-19 weeks later (T2) via in-person standardized patient encounters; delayed access physicians then received the intervention. A final test of all physicians occurred 11-15 weeks after T2 (T3). The primary outcome measured the percentage of physicians in the immediate versus delayed access groups meeting or exceeding the UCC minimum passing standard at T2. RESULTS: Overall, 109 physicians were randomized, with mean age 29 years (range 25-46). The majority were male (n = 69, 63%), non-Hispanic/Latino (n = 99, 91%), and White (n = 78, 72%). At T2, when only immediate access participants had received the curriculum, immediate access physicians demonstrated increased mastery (n = 29, 52.7%) compared with delayed access physicians (n = 2, 3.7%, P < .001; estimated adjusted odds ratio of mastery for the immediate access participants, 31.1 [95% CI, 6.8-143.1]). There were no significant differences when adjusting for training site or stage of training. CONCLUSIONS: The Uncertainty Communication Education Module significantly increased mastery in communicating diagnostic uncertainty at the first postintervention test among emergency physicians in standardized patient encounters. Further work should assess the impact of clinical implementation of these communication skills.

Patient-important outcomes to inform shared decision making and goal setting for diabetes treatment.

OBJECTIVE: Despite well-established treatment guidelines, diabetes is difficult to manage for many individuals. The importance of using shared decision making to optimize diabetes treatment is recognized, yet what matters most to individuals with diabetes is not well established. Our goal was to identify patients' goals and priorities for diabetes management. METHODS: We engaged 141 participants through interviews and group concept mapping to identify patient-important outcomes (PIOs) for diabetes care. We generated a master list of PIOs by aggregating interview data coded to "goals" and ideas brainstormed during concept mapping, and then a patient advisory board sorted the PIOs into higher-level domains. RESULTS: We identified 41 PIOs sorted into 7 broad domains: optimize daily self-care, optimize long term health, learn about diabetes, achieve measurable goals, manage medications, manage diet and best utilize medical / professional services. CONCLUSIONS: Most (4/7) of PIO domains focused on personal and life goals, not medically-oriented goals. Use of these PIOs and domains may facilitate more effective SDM discussions for patients with diabetes. PRACTICE IMPLICATIONS: Use of PIOs from this work can enable the empowerment of patients to voice their priorities during SDM conversations, thus facilitating development of truly individualized diabetes treatment plans.

Development of the Uncertainty Communication Checklist: A Patient-Centered Approach to Patient Discharge From the Emergency Department.

Clear communication with patients upon emergency department (ED) discharge is important for patient safety during the transition to outpatient care. Over one-third of patients are discharged from the ED with diagnostic uncertainty, yet there is no established approach for effective discharge communication in this scenario. From 2017 to 2019, the authors developed the Uncertainty Communication Checklist for use in simulation-based training and assessment of emergency physician communication skills when discharging patients with diagnostic uncertainty. This development process followed the established 12-step Checklist Development Checklist framework and integrated patient feedback into 6 of the 12 steps. Patient input was included as it has potential to improve patient-centeredness of checklists related to assessment of clinical performance. Focus group patient participants from 2 clinical sites were included: Thomas Jefferson University Hospital, Philadelphia, PA, and Northwestern University Hospital, Chicago, Illinois.The authors developed a preliminary instrument based on existing checklists, clinical experience, literature review, and input from an expert panel comprising health care professionals and patient advocates. They then refined the instrument based on feedback from 2 waves of patient focus groups, resulting in a final 21-item checklist. The checklist items assess if uncertainty was addressed in each step of the discharge communication, including the following major categories: introduction, test results/ED summary, no/uncertain diagnosis, next steps/follow-up, home care, reasons to return, and general communication skills. Patient input influenced both what items were included and the wording of items in the final checklist. This patient-centered, systematic approach to checklist development is built upon the rigor of the Checklist Development Checklist and provides an illustration of how to integrate patient feedback into the design of assessment tools when appropriate.

Patient experience and challenges in group concept mapping for clinical research.

BACKGROUND AND OBJECTIVE: Group concept mapping (GCM) is a research method that engages stakeholders in generating, structuring and representing ideas around a specific topic or question. GCM has been used with patients to answer questions related to health and disease but little is known about the patient experience as a participant in the process. This paper explores the patient experience participating in GCM as assessed with direct observation and surveys of participants. METHODS: This is a secondary analysis performed within a larger study in which 3 GCM iterations were performed to engage patients in identifying patient-important outcomes for diabetes care. Researchers tracked the frequency and type of assistance required by each participant to complete the sorting and rating steps of GCM. In addition, a 17-question patient experience survey was administered over the telephone to the participants after they had completed the GCM process. Survey questions asked about the personal impact of participating in GCM and the ease of various steps of the GCM process. RESULTS: Researchers helped patients 92 times during the 3 GCM iterations, most commonly to address software and computer literacy issues, but also with the sorting phase itself. Of the 52 GCM participants, 40 completed the post-GCM survey. Respondents averaged 56 years of age, were 50% female and had an average hemoglobin A1c of 9.1%. Ninety-two percent (n = 37) of respondents felt that they had contributed something important to this research project and 90% (n = 36) agreed or strongly agreed that their efforts would help others with diabetes. Respondents reported that the brainstorming session was less difficult when compared with sorting and rating of statements. DISCUSSION: Our results suggest that patients find value in participating in GCM. Patients reported less comfort with the sorting step of GCM when compared with brainstorming, an observation that correlates with our observations from the GCM sessions. Researchers should consider using paper sorting methods and objective measures of sorting quality when using GCM in patient-engaged research to improve the patient experience and concept map quality.

Patient Uncertainty as a Predictor of 30-day Return Emergency Department Visits: An Observational Study.

OBJECTIVE: The objective was to examine the relationship between patient uncertainty at the time of emergency department (ED) discharge as measured by the "Uncertainty Scale" (U-Scale) and 30-day return ED visits. We hypothesized that a higher score on the U-Scale predicts a higher likelihood of a 30-day return ED visit. METHODS: This was a cross-sectional single-site pilot study performed with adult patients discharged from an urban academic ED to assess the relationship of U-Scale total and subscale scores with 30-day return ED visits. We collected demographic and U-Scale scores at the time of ED discharge and subsequent 30-day ED utilization data by follow-up telephone call. RESULTS: No association was found between the total U-Scale score and subsequent ED utilization. Patients with higher uncertainty on the Treatment Quality subscale of the U-Scale had higher odds of a 30-day return ED visit (adjusted odds ratio [AOR] = 1.16), while patients with lower uncertainty on the Decision to Seek Care subscale had higher odds of a 30-day return ED visit (AOR = 0.68). CONCLUSION: Patient uncertainty as measured by the U-Scale total score was not predictive of subsequent ED utilization. However, uncertainty related to treatment quality and the decision to seek care as measured by the U-Scale subscales may be important in predicting repeat ED utilization. Unlike individual patient factors such as age and race that have been associated with frequent ED visits in prior studies, these domains of uncertainty are potentially modifiable. Providers and health systems may successfully prevent recurrent acute care encounters through implementation of interventions designed to address patient uncertainty. Further work is needed to refine the U-Scale and test its predictive utility among a larger patient cohort.

Eliciting patient-important outcomes through group brainstorming: when is saturation reached?

PURPOSE: Group brainstorming is a technique for the elicitation of patient input that has many potential uses, however no data demonstrate concept saturation. In this study we explore concept saturation in group brainstorming performed in a single session as compared to two or three sessions. METHODS: Fifty-two predominately African American adults patients with moderately to poorly controlled Diabetes Mellitus participated in three separate group brainstorming sessions as part of a PCORI-funded group concept mapping study examining comparing methods for the elicitation of patient important outcomes (PIOs). Brainstorming was unstructured, in response to a prompt designed to elicit PIOs in diabetes care. We combined similar brainstormed responses from all three sessions into a 'master list' of unique PIOs, and then compared the proportion obtained at each individual session, as well as those obtained in combinations of 2 sessions, to the master list. RESULTS: Twenty-four participants generated 85 responses in session A, 14 participants generated 63 in session B, and 14 participants generated 47 in session C. Compared to the master list, the individual sessions contributed 87%, 76%, and 63% of PIOs. Session B added 3 unique PIOs not present in session A, and session C added 2 PIOs not present in either A or B. No single session achieved >90% saturation of the master list, but all 3 combinations of 2 sessions achieved > 90%. CONCLUSIONS: Single sessions elicited only 63-87% of the patient-important outcomes obtained across all three sessions, however all combinations of two sessions elicited over 90% of the master list, suggesting that 2 sessions are sufficient for concept saturation. TRIAL REGISTRATION: NCT02792777 . Registered 2 June 2016.