"I'm Going to Be Good to Me": Exploring the Role of Shame and Guilt in Patients With Type 2 Diabetes.

Objective: People with type 2 diabetes are likely to experience shame or guilt as they navigate through their disease. Previous research has shown that feelings of shame and guilt often exist within the clinician-patient relationship, often as a result of the complex care regimen required to achieve treatment goals. The purpose of this qualitative study was to explore patients' experiences of shame and guilt in type 2 diabetes management and the impact their clinicians have on these experiences. Methods: Semistructured interviews were used to explore patients' experiences with shame and guilt. Interviews were audio-recorded, transcribed, and coded using directed content analysis. Demographic data were also obtained. Results: We completed 20 interviews with people with type 2 diabetes (65% Black, 70% female). Participants exhibited feelings more consistent with guilt than with shame. All participants discussed how their clinicians affected these feelings. Patients who expressed feelings of guilt were able to recognize opportunities for behavior change without experiencing global devaluation, in which they linked their actions to an unchangeable aspect of their identity or personality, often describing their guilt as motivating of change. Unlike guilt, when patients experienced shame, they often exhibited global devaluation, in which they blamed their personality, experienced hopelessness, and increased maladaptive behaviors. Conclusion: Our findings highlight a notable difference between shame and guilt in the context of type 2 diabetes management. We believe that incorporation of an understanding of these nuances, along with ideal responses to both shame and guilt, will enhance clinicians' ability to provide high-quality patient-centered care to people with diabetes.

Development of the Oncology Opportunity Cost Assessment Tool: Item Generation and Content Validity Testing.

PURPOSE: The purpose of this study was to develop the Oncology Opportunity Cost Assessment Tool (OOCAT), a survey instrument to evaluate the opportunity costs patients experience when seeking medical oncology care. METHODS: Development of the OOCAT involved extensive patient engagement through both focus groups and interviews. First, the study team developed a list of opportunity cost concepts, which included patients' logistical and financial considerations related to seeking care. We conducted focus groups with patients to expand upon this list of concepts, and then developed a set of questions that incorporated all the concepts generated during the focus groups. To refine these questions, we next performed cognitive interviews with another set of patients to ensure content validity and clarity of instrument items, refining the OOCAT iteratively on the basis of feedback. RESULTS: We engaged 23 participants (17 patients and six caregivers) across four focus groups and 17 participants in cognitive interviews. Focus group participants generated 112 concepts, which resulted in an initial OOCAT with 16 questions. Cognitive interviews resulted in modification of 12 questions and addition of two questions (related to coordination of transportation and impact on home responsibilities). The final OOCAT consisted of 18 items examining time requirements for appointments, financial implications of traveling to appointments for the patient and the caregiver, and logistical and quality-of-life challenges associated with traveling for appointments. CONCLUSION: We developed the OOCAT, an instrument designed to evaluate patient-level opportunity costs of seeking medical oncology care. Further studies to validate the OOCAT are underway.

COVID-19 Pandemic Influence on Medical Oncology Provider Perceptions of Telehealth Video Visits.

PURPOSE: The COVID-19 pandemic necessitated a rapid expansion of telehealth use in oncology, a specialty in which prior utilization was low in part because of barriers perceived by providers. Understanding the changing perceptions of medical oncology providers during the pandemic is critical for continued expansion and improvement of telehealth in cancer care. This study was designed to identify medical oncology providers' perceptions of telehealth video visits as influenced by the COVID-19 pandemic. METHODS: We conducted semi-structured interviews with medical oncology providers from November 20, 2020, to January 27, 2021, at the Sidney Kimmel Cancer Center at Thomas Jefferson University, a National Cancer Institute-designated cancer center in an urban, academic health system in Philadelphia, PA. We assessed provider perceptions of the impact of the COVID-19 pandemic on (1) provider-level comfort and willingness for telehealth, (2) provider-perceived patient comfort and willingness to engage in telehealth, and (3) continued barriers to successful telehealth use. RESULTS: Volunteer and convenience sampling resulted in the participation of 25 medical oncology providers, including 18 physicians and seven advanced practice providers, in semi-structured interviews. Of the 25 participants, 13 (52%) were female and 19 (76%) were White, with an average age of 48.5 years (standard deviation = 12.6). Respondents largely stated an increased comfort level and willingness for use of video visits. In addition, respondents perceived a positive change in patient comfort and willingness, mostly driven by convenience, accessibility, and reduced risk of COVID-19 exposure. However, several reported technologic issues and limited physical examination capability as remaining barriers to telehealth adoption. CONCLUSION: The rapid adoption of telehealth necessitated by the COVID-19 pandemic has increased provider-level and provider-perceived patient comfort and willingness to engage in video visits for cancer care. As both providers and patients increasingly accept telehealth across many use cases, future work should focus on further addressing technology and physical examination barriers and ensuring continued reimbursement for telehealth as a routine part of covered care.

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.

Digital Literacy at an Urban Cancer Center: Implications for Technology Use and Vulnerable Patients.

PURPOSE: eHealth literacy, or the ability to seek, find, understand, and appraise health information from electronic sources, has become increasingly relevant in the era of COVID-19, when so many aspects of patient care became dependent on technology. We aimed to understand eHealth literacy among a diverse sample of patients with cancer and discuss ways for health systems and cancer centers to ensure that all patients have access to high-quality care. METHODS: A cross-sectional survey of patients with cancer and caregivers was conducted at an NCI-designated cancer center to assess access to the Internet, smartphone ownership, use of mobile apps, willingness to engage remotely with the health care team, and use of the patient portal. Descriptive statistics and bivariate analyses were used to assess frequencies and significant differences between variables. RESULTS: Of 363 participants, 55% (n = 201) were female, 71% (n = 241) identified as non-Hispanic White, and 29% (n = 85) reported that their highest level of education was a high school diploma. Most (90%, n = 323) reported having access to the Internet and most (82%, n = 283) reported owning a smartphone. Younger patients or those with a college degree were significantly more likely to own a smartphone, access health information online, know how to download an app on their own, have an interest in communicating with their health care team remotely, or have an account on the electronic patient portal. CONCLUSION: As cancer centers increasingly engage patients through electronic and mobile applications, patients with low or limited digital literacy may be excluded, exacerbating current cancer health disparities. Patient-, provider- and system-level technology barriers must be understood and mitigated.

Medical Oncology Patient Perceptions of Telehealth Video Visits.

PURPOSE: Telehealth in medical oncology has expanded secondary to the COVID-19 pandemic. However, quantitative research on medical oncology telehealth use shows conflicting results on patient satisfaction, whereas qualitative data are sparse. Our qualitative study aimed to identify the factors influencing patient acceptability of video visits for medical oncology care before and at the onset of the expansion of telehealth because of the COVID-19 pandemic. METHODS: Semi-structured interviews were conducted between November 2019 and April 2020 with 20 patients who participated in a telehealth visit with a medical oncology provider at Thomas Jefferson University. RESULTS: Of the 20 participants, 13 (65%) were female and 15 (75%) were White, with a mean (standard deviation) age of 60.5 years (11.8). Patients identified convenience, anxiety, COVID-19, and provider preference as positively influencing the acceptability of video visits; however, some patients noted limitations in provider connection, physical examinations, and visit length as disadvantages. Regarding receipt of serious or bad news, some preferred video visits for privacy, immediacy of results, news processing, and family comfort. Others preferred in-person encounters for provider support and the ability to receive written information and in-person referrals. CONCLUSION: Patient-perceived factors influencing general acceptability, appropriateness of serious and bad news delivery, and future uses of telehealth were unique to each individual, but shared common themes. Understanding each patient's perspective of telehealth acceptability and tailoring use to their preferences is critical for continued utilization. Further research is needed to understand and address reasons for lack of telehealth uptake among certain patients.

Impact of Emergency Department Tele-intake on Left Without Being Seen and Throughput Metrics.

OBJECTIVES: More than 2 million patients present to a U.S. emergency department (ED) annually and leave without being seen (LWBS) due to delays in initiating care. We evaluated whether tele-intake at the time of presentation would reduce LWBS rates and ED throughput measures. METHODS: We conducted a before-and-after study at an urban community hospital. The intervention was use of a tele-intake physician to triage patients from 11 am to 6 pm, 7 days per week. Tele-intake providers performed a triage history and physical examination, documented findings, and initiated orders in the medical record. We assessed the impact of this program using the domains of the National Quality Forum framework evaluating access, provider experience, and effectiveness of care. The main outcome was 24-hour LWBS rate. Secondary outcomes were overall door to provider and door to disposition times, left without treatment complete (LWTC), left against medical advice (AMA), left without treatment (LWOT), and physician experience. We compared the 6-month tele-intake period to the same period from the prior year (October 1 to April 1, 2017 vs. 2016). Additionally, we conducted a survey of our physicians to assess their experience with the program. RESULTS: Total ED volume was similar in the before and after periods (19,892 patients vs. 19,646 patients). The 24-hour LWBS rate was reduced from 2.30% (95% confidence interval [CI] = 2.0% to 2.5%) to 1.69% (95% CI = 1.51% to 1.87%; p < 0.001). Overall door to provider time decreased (median = 19 [interquartile range {IQR} = 9 to 38] minutes vs. 16.2 [IQR = 7.8 to 34.3] minutes; p < 0.001), but ED length of stay for all patients (defined as door in to door out time for all patients) minimally increased (median = 184 [IQR = 100 to 292] minutes vs. 184.3 [IQR = 104.4 to 300] minutes; p < 0.001). There was an increase in door to discharge times (median = 146 [IQR = 83 to 231] minutes vs. 148 [IQR = 88.2 to 233.6] minutes; p < 0.001) and door to admit times (median = 330 [IQR = 253 to 432] minutes vs. 357.6 [IQR = 260.3 to 514.5] minutes; p < 0.001). We saw an increase in LWTC (0.59% [95% CI = 0.49% to 0.70%] vs. 1.1% [95% CI = 0.9% to 1.2%]; p < 0.001), but no change in AMA (1.4% [95% CI = 1.2% to 1.6%] vs. 1.6% [95% CI = 1.4% to 1.78%]; p = 0.21) or LWOT (4.3% [95% CI = 4.1% to 4.6%] vs. 4.4% [95% CI = 4.1% to 4.7%]; p = 0.7). Tele-intake providers thought tele-intake added value (12/15, 80%) and allowed them to effectively address medical problems (14/15, 95%), but only (10/15, 67%) thought that it was as good as in-person triage. Of the receiving physicians, most agreed with statements that tele-intake did not interfere with care (19/22, 86%), helped complement care (19/21, 90%), and gave the patient a better experience (19/22, 86%). CONCLUSIONS: Remote tele-intake provided in an urban community hospital ED reduced LWBS and time to provider but increased LWTC rates and had no impact on LWOT.

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.

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.

Geography, Not Health System Affiliations, Determines Patients' Revisits to the Emergency Department.

OBJECTIVES: To determine how frequently patients revisit the emergency department after an initial encounter, and to describe revisit capture rates for the same hospital, health system, and geographic region. DATA SOURCES/STUDY SETTING: Florida state data from January 1, 2010, to June 30, 2011, from the Healthcare Cost and Utilization Project. STUDY DESIGN: This is a retrospective cohort study of emergency department return visits among Florida adults over an 18-month period. We evaluated pairs of index and 30-day return emergency department visits and compared capture rates for hospital, health system, and geographic units. DATA COLLECTION/EXTRACTION METHODS: Data were obtained from the Agency for Healthcare Research and Quality's Healthcare Cost and Utilization Project and the American Hospital Association Annual Survey Database. PRINCIPAL FINDINGS: Among 9,416,212 emergency department visits, 22.6 percent (2,124,441) were associated with a 30-day return. Seventy percent (1,477,772) of 30-day returns occurred to the same hospital. The 30-day return capture rates were highest within the same geographic area: county-level capture at 92 percent (IQR=86-96 percent) versus health system capture at 75 percent (IQR = 68-81 percent). CONCLUSIONS: Acute care utilization patterns are often independent of health system boundaries. Current population-based health care models that attribute patients to a single provider or health system may be strengthened by considering geographic patterns of acute care utilization.

Patient-centered Outcomes Research in Emergency Care: Opportunities, Challenges, and Future Directions.

The Patient-Centered Outcomes Research Institute (PCORI) was established by Congress in 2010 to promote the conduct of research that could better inform patients in making decisions that reflect their desired health outcomes. PCORI has established five national priorities for research around which specific funding opportunities are issued: 1) assessment of prevention, diagnosis, and treatment options; 2) improving healthcare systems; 3) communication and dissemination research; 4) addressing disparities; and 5) improving methods for conducting patient-centered outcomes research. To date, implementation of patient-centered research in the emergency care setting has been limited, in part because of perceived challenges in meeting PCORI priorities such as the need to focus on a specific disease state or to have planned follow up. We suggest that these same factors that have been seen as challenges to performing patient-centered research within the emergency setting are also potential strengths to be leveraged to conduct PCORI research. This paper explores factors unique to patient-centered emergency care research and highlights specific areas of potential alignment within each PCORI priority.

Patient returns to the emergency department: the time-to-return curve.

OBJECTIVES: Although 72-hour emergency department (ED) revisits are increasingly used as a hospital metric, there is no known empirical basis for this 72-hour threshold. The objective of this study was to determine the timing of ED revisits for adult patients within 30 days of ED discharge. METHODS: This was a retrospective cohort study of all nonfederal ED discharges in Florida and Nebraska from April 1, 2010, to March 31, 2011, using data from the Agency for Healthcare Research and Quality (AHRQ) Healthcare Cost and Utilization Project (HCUP). ED discharges were followed forward to identify ED revisits occurring at any hospital within the same state within 30 days. The cumulative hazard of an ED revisit was plotted. Parametric and nonparametric modeling was performed to characterize the rate of ED revisits. RESULTS: There were 4,782,045 ED discharges, with 7.5% (95% confidence interval [CI] = 7.4% to 7.5%) associated with 3-day revisits, and 22.4% (95% CI = 22.3% to 22.4%) associated with 30-day revisits, inclusive of the 3-day revisits. A double-exponential model fit the data best (p < 0.0001), and a single hinge point at 9 days (multivariate adaptive regression splines [MARS] model) yielded the best linear fit to the data, suggesting 9 days as the most reasonable cutoff for identification of acute ED revisits. Multiple stratified and subgroup analyses produced similar results. Future work should focus on identifying primary reasons for potentially avoidable return ED visits instead of on the revisit occurrence itself, thus more directly measuring potential lapses in delivery of high-quality care. CONCLUSIONS: Almost one-quarter of ED discharges are linked to 30-day ED revisits, and the current 72-hour ED metric misses close to 70% of these patients. Our findings support 9 days as a more inclusive cutoff for studies of ED revisits.