Do Hispanic Patients Who Require a Medical Interpreter Understand the Severity of Their Glaucoma Diagnosis?

Background and Hypothesis: Glaucoma is a group of progressive optic neuropathies characterized by a degeneration of retinal ganglion cells with characteristic changes in the visual field. The Los Angeles Latino Eye Study (LALES) is the largest and most recent study to determine the prevalence of open-angle glaucoma in Hispanics; reported at nearly 5%. Between 2010 – 2019, Hispanic patients accounted for more than half of the United States population growth, reaching a record of 60.6 million Hispanics living in the United States. With an influx of Hispanic’s migrating to the United States, there is an increased need for medical interpreters to assist medical professionals in encounters with Hispanic patients. The success of a medical encounter relies on a multitude of factors, but when a medical interpreter is involved, the stakes are even higher. We hypothesize that Hispanic speaking patients will have lower rates of understanding their glaucoma diagnosis and severity, in comparison to English speaking patients due to gaps in translation provided by medical interpreters. Project Methods: Native Spanish and native English-speaking patients from the Eskenazi Health Eye Clinic were recruited via phone, reminding them of their upcoming eye appointment and their eligibility to participate in the study. Interested patients were provided with information regarding the study and consent materials at the start of the medical encounter. Participants who consented were administered the survey at the end of their medical encounter, in their preferred language, in person, at the clinic. Results: This is an ongoing prospective study. Potential Impact: This study will determine if medical interpreters successfully relay all the necessary information regarding a Hispanic patient’s glaucoma diagnosis. This study could also provide a partial explanation as to why there is a high no show rate and high medication noncompliance rate within the Eskenazi Health Eye Clinic Hispanic population.

‘Written of by novelists’: scripting and managing emotions in 19th-century medical manuscripts

Literary and medical historical scholars have long explored the work of physician–writers and the cross-pollination of literature and medicine. However, few scholars have considered how these interactions have shaped medical manuscripts and the echoes they contain of the emotional contours of the medical encounter. This essay uses the papers of Southern physician Andrew Bowles Holder (1860–1896) to explore how the emotions of the physician were managed at the bedside and in the aftermath of medical encounters through recourse to literary thinking. Holder, like many 19th-century physicians, was an avid reader with an interest in literary endeavours, and his manuscripts reveal the influences of literature on his work as a physician. This article frames the bedside as a theatre of emotions, in which Holder’s performance and management of his emotions was key to his professional identity. His literary interests thus provided him with two tools: first, literature provided him with models for how to respond to and record different kinds of medical encounters, particularly deaths, near-death experiences and childbirth; second, his mode of keeping these records, which included the production of poetry as well as medical prose, served as a technology of coping, further allowing him to manage his emotions by exorcising them on the page.

Direct-to-Consumer or On-Demand Telehealth

Direct-to-consumer (DTC) or on-demand telehealth describes a patient-initiated medical encounter using technology in real time—mostly related to acute care or urgent complaints. Initially created and offered by private companies, DTC telehealth is now more ubiquitous, as it has been offered by hospitals, medical centers, multi-specialty practices, and insurers. On-demand telehealth services are implemented in an effort to increase health care access, improve satisfaction and efficiency, as well as drive new revenue. This chapter outlines the types of DTC telehealth, considerations when conducting a needs assessments, implementation, business models, and quality assurance.

On mediating agents’ moves and how they might affect patient-centredness in mediated medical consultations

The present study aims to shed some light on indicators that might potentially challenge patient-centredness (as practised by self-professed patient-centred doctors) within a mediated medical encounter, and to contribute to the fields of linguistics, translation studies and medical communication. Selected instances of transcribed video recordings are analysed within the framework of Goffman’s footing and participation roles, while transcribed audio recorded interviews with participants in the triad are taken into consideration as well. Both verbal and non-verbal cues (i.e., gaze) are taken into account. The data is drawn from a corpus of video-recorded mediated consultations in a urban hospital in Belgium. Hospital ethical approval and subjects’ written informed consent have been obtained

Epidemiology and economic burden of bronchiectasis requiring hospitalisation in Singapore

Background and objectiveLittle is known about the epidemiology and cost of bronchiectasis in Asia. This study describes the disease burden of bronchiectasis in Singapore.MethodsA nationwide administrative dataset was used to identify hospitalisations with bronchiectasis as a diagnosis. Population statistics and medical encounter data were used to estimate the incidence, mortality, prevalence and direct medical costs associated with hospitalisation-requiring bronchiectasis.ResultsThere were 420 incident hospitalised bronchiectasis patients in 2017, giving an incidence rate of 10.6/100 000. Age-standardised incidence declined on average by 2.7% per year between 2007 and 2017. Incidence rates increased strongly with age in both men and women. Tuberculosis was a secondary diagnosis in 37.5% of incident hospitalisations in 2007, but has declined sharply since then. Patient survival was considerably lower in both men (5-year Relative Survival Ratios (RSR) of 0.63 (95% CI, 0.59 to 0.66)) and women ((5-year RSR of 0.75 (95% CI, 0.72 to 0.78)). The point prevalence of bronchiectasis was 147.1/100,000 in 2017, and increased sharply with age, with more than 1% of people aged 75 years and older having bronchiectasis. Total first-year costs among incident bronchiectasis patients in 2016 varied widely, with an average of $7331 (standard deviation of $8863). About 10% of the patients admitted in 2016 had total first-year costs of more than $14 380.ConclusionBronchiectasis is common and imposes a substantial burden on health care costs and survival rates of patients in Singapore.

Waiting, strange: transplant recipient experience, medical time and queer/crip temporalities

People who receive a ‘solid’ organ transplant from a deceased person may experience imaginative challenges in making sense of how the transfer impacts their own past and future, as shown in existing scholarship. Building on such work, this article considers how the temporalities of medical encounter itself may also become temporally ambiguous, posing representational challenges both pre-transplantation and post-transplantation. The dominant narrative of transplant in transplantation journals and hospital communications, both clinical and patient-facing, presents surgery as a healing moment, yet the recipient’s experience of hospital, pharmacology and daily self-monitoring may be disorienting in multiple ways which resist conventional conceptions of medical temporalities of cure. Examining memoirs by Robert Pensack and Richard McCann, this article suggests the transplant temporalities may be fruitfully approached through scholarship of ‘queering’ time and ‘crip’ time. While the medical narrative of transplant focuses on the event of transplantation, these texts construct post-transplant time as still profoundly structured by waiting, expectation and suspense, the transformed body less healed than permanently contingent and fragile in different ways. I do not purport to uncover the ‘truth’ of bleak survival hidden within a story of the miraculous. Rather, I am reaching for a critical practice to recognise subtle entanglements of medicalised time, and identify a tension and synthesis between miracle and the chronic, an insight which may also be of service for other critical approaches to memoir of heroic medicine.

Patients Contributing to their Visit Notes: A Mixed Methods Evaluation of Pilot Experiments with OurNotes (Preprint)

BACKGROUND Patients are uniquely positioned to document both their subjective experiences and goals for a medical encounter. OBJECTIVE To assess the effects of 12-month pilot interventions of co-generated visit notes. METHODS Patients at 6 primary care practices in 4 academic health centers were asked to provide unstructured interval histories and an agenda for discussion prior to a scheduled primary care visit. Clinicians were invited to incorporate these submissions into visit notes, thereby generating “OurNotes.”174 providers participated, and 1,962 patients submitted at least 1 pre-visit form. RESULTS 76 providers (44%) and 525 patients (27%) responded; 74 providers and 321 patients remembered the OurNotes forms and answered survey questions. Patients found the history (81%) and agenda (89%) questions not difficult to answer; >90% thought sending answers before the visit a good idea; 69% thought the questions helped them prepare; we found no differences for patients reporting chronic conditions. Patients wanted to learn how to write better answers and to know whether their submissions were read. Clinicians thought interim histories (93%) and agendas (97%) a good idea; 69% usually/always incorporated them into notes; 37% thought they saved time in visit length; 53% reported no change. They suggested improving notifications when forms arrived, simplifying inserting submissions into notes, and teaching patients how to prepare submissions. All sites decided to continue with OurNotes after the pilots. CONCLUSIONS Overall, both patient and clinician respondents viewed the pilot interventions positively and encouraged further development, and each site chose to continue the practice. CLINICALTRIAL N/A

Prioritizing social identities: Patients’ perspective on living with multimorbidity

Objective: This article explores experiences of people with multimorbidity, and attempts to advance understandings of the complexity of living with multimorbidity outside the medical encounter in a social identity theoretical framework. Method: This is a qualitative study using individual semi-structured interviews among nine persons living with multimorbidity. The interviews are analysed inductively according to thematic content analysis. Results: The emerging themes are: 1) Impact on daily life, 2) Professional life and 3) Capacity for handling multimorbidity. People with multimorbidity experience physical limitations and psychological distress, which limits their ability to maintain social relations and affiliation to the labour market. Accordingly, they are challenged in their ability to retain a sense of normal everyday life, which is mediated by their capacity for handling multimorbidity. Discussion: Multimorbidity may compromise various social identities. The complexity of living with multimorbidity is increased by an aspiration to maintain valued social identities in order to preserve a coherent sense of self and a normal everyday life. This study suggests an increased focus on individual priorities and values outside the medical encounter, and argues in favour of recognizing the conflicts that people experience as they try to balance multimorbidity with other important aspects of their daily lives.

Longitudinal Analysis of Anemia Severity, Treatment and Healthcare Resource Utilization Among Patients with Primary Cold Agglutinin Disease in a Large US Database

Introduction Cold agglutinin disease (CAD) is a serious and rare autoimmune hemolytic anemia driven by cold agglutinin autoantibodies, which bind to red blood cells and activate the classical complement system to initiate hemolysis and anemia (Berentsen S. Hematology Am Soc Hematol Educ Program 2016). There is limited evidence on the individual and societal impact of CAD. A retrospective study of 27 patients in a US healthcare institute demonstrated fluctuations in severity of anemia over the course of the disease, and significant utilization of healthcare resources (Mullins M et al. Blood Adv 2017). The objective of this study was to understand the long-term characteristics and disease burden in patients with primary CAD from a large US Electronic Health Record (EHR) database. Methods This retrospective observational cohort study included adult patients from the Optum© EHR database between January 1, 2007 and September 30, 2019 who had ≥1 medical encounter with an autoimmune hemolytic anemia-related diagnosis code, ≥3 documentations (on different dates) of CAD and ≥1 hemoglobin (Hb) value <12 g/dL. The index date was defined as the first mention of CAD; all patients were required to have a 12-month baseline period prior to this. To limit the study to patients with primary CAD, patients were excluded if they had ≥1 medical encounter with mycoplasma, cytomegalovirus and Epstein-Barr at the index date, or ≥1 medical encounter with lymphoma, MALT lymphoma, chronic lymphoid leukemia, Waldenstrom macroglobulinemia or myeloma during the baseline period. Anemia severity (defined as the lowest Hb value in each study period), utilization of CAD-related therapies, blood transfusions and all-cause healthcare resource utilization (HCRU) were analyzed at baseline and at 6-month follow-up intervals. Although no treatment is approved in CAD, corticosteroids, immunoglobulin, rituximab, immunosuppressants, antineoplastic and biologics were considered as CAD-related therapies to reflect usual practice. Results were stratified by anemia severity category (severe [Hb <8 g/dL], moderate [Hb 8.0-10 g/dL], mild [Hb 10.1-<12 g/dL] or no anemia [Hb ≥12 g/dL]) during each follow-up interval. Severe hemolysis was defined as elevated LDH and/or elevated bilirubin. Results A total of 610 adults with primary CAD were included in the study (mean [SD] age 67.9 [14.5] years, 65.4% female). The mean (SD) duration of follow-up was 48.1 (30.6) months; 90% of patients had ≥12 months of follow-up. At baseline (0-6 months prior to first mention of CAD), 47.6% of patients had elevated bilirubin levels and 63.1% had elevated lactate dehydrogenase (LDH) levels. A high proportion of patients with CAD experienced severe or moderate anemia at baseline and in the 6 months post-baseline; this proportion tended to be lower, but still substantial, throughout the follow-up period (Table). Frequency of moderate/severe anemia or severe hemolysis events per patient year was also higher in the first 6 months: 5.70 (95% CI: 5.00, 6.49), compared with 2.92 (2.30, 3.71) and 2.43 (1.89, 3.11) events at months 19-24 and months 31-36, respectively. The median number of CAD-related treatments per patient was high in all CAD patients at 6 months and remained high during the follow-up period (Table). The most common therapies used (excluding blood transfusion) were corticosteroids, antineoplastics and biologics. The mean number of blood transfusions per patient was higher in the severe anemia category at all follow-up intervals. The number of hospitalizations and emergency room visits were generally higher in patients with increased anemia severity; outpatient visits were high in all CAD patients and remained so over the study period (Table). Conclusion This observational cohort study followed a large sample of primary CAD patients with a 4-year mean follow-up. The results highlight the long-term substantial burden of CAD on patients and healthcare systems, which generally increased with higher severity of anemia. Three years after diagnosis, the number of moderate to severe anemia or hemolysis events remained high in CAD patients, despite off-label CAD management. The need for blood transfusions was still substantial in the severe anemic population 3 years after diagnosis. This longitudinal analysis illustrates the unmet medical needs in primary CAD. Disclosures Wilson: Sanofi: Current Employment, Current equity holder in publicly-traded company. Joly:Sanofi: Current Employment, Current equity holder in publicly-traded company. Miles:Aetion Inc.: Current Employment, Other: Employee of software company that received funding from Sanofi for the current study. Kuang:Aetion Inc.: Current Employment, Other: Employee of software company that received funding from Sanofi for the current study. Pham:Sanofi: Consultancy; Alexion: Other: Speaker.