comparison of shared decision making in monolingual and bilingual health encounters

2020 ◽  
Vol 15 (2) ◽  
pp. 206-221
Author(s):  
Charlene Pope ◽  
Jason Roberson

In the United States, Hispanics with limited English proficiency (LEP) experience disproportionate disparities in health services, a phenomenon that relates to communication and decision making. After a quality improvement review identified a disparity in obstetric services for Hispanic women with LEP, a pilot study discussed here explored how LEP and the presence of a medical interpreter affected shared decision making in comparisons of monolingual (English) and bilingual (English-Spanish) encounters with the same physician. A series of 16 prenatal encounters between physicians, patients, and medical interpreters were recorded. First, medical visits were recorded with eight Spanish-speaking mothers using a hospital interpreter to speak with their physician. The same physician was then recorded discussing a similar prenatal agenda with a primary language English-speaking patient. Discourse analysis was used to categorize discursive practices in social interaction. Both encounters were rated using the OPTION shared decision-making scale. Results portray how shared decision making shifts in second-language situations and the associated practices that distinguish monolingual and bilingual encounters. Examples of discursive practices suggest strategies that may mark ethnolinguistic identity and membership categorization indirectly during health encounters.

2021 ◽  
Author(s):  
Alysha Taxter ◽  
Lisa Johnson ◽  
Doreen Tabussi ◽  
Yukiko Kimura ◽  
Brittany Donaldson ◽  
...  

BACKGROUND Coproduction of care involves patients and families partnering with their clinicians and care teams, with the premise that each brings their own perspective, knowledge, and expertise, as well as their own values, goals, and preferences to the partnership. Dashboards can display meaningful patient and clinical data to assess how a patient is doing and inform shared decision making. Increasing communication between patients and care teams is particularly important for children with chronic conditions, such as juvenile idiopathic arthritis (JIA), which is the most common, chronic rheumatic condition of childhood, and is associated with increased pain, decreased function, and decreased quality of life. OBJECTIVE We aimed to design a dashboard prototype for use in coproducing care for JIA patients. We evaluated the context use and needs of end users, obtained consensus on the necessary dashboard data elements, and constructed display prototypes to inform meaningful discussions for coproduction. METHODS A human-centered design approach involving parents, patients, clinicians, and care team members was used to develop a dashboard to support coproduction of care in four diverse ambulatory pediatric rheumatology clinics across the United States. We engaged a multidisciplinary team (n=18) of patients/parents, clinicians, nurses, and staff during an in-person kick-off meeting, followed by bi-weekly meetings. We also leveraged advisory panels. Teams mapped workflows and patient journeys, created personas, and developed dashboard sketches. Final necessary dashboard components were determined using Delphi consensus voting. Low-tech dashboard testing was completed during clinic visits, and visual display prototypes were iterated using PDSA methodology. Patients and providers were surveyed about their experiences. RESULTS Teams achieved consensus on what data matters most at point-of-care to support JIA patients, families, and clinicians partnering together to make the best possible decisions for better health. Notable themes included: the right data, in the right place, at the right time; data in once for multiple purposes; patient and family self-management components; and opportunity for education and increased transparency. A final set of 11 dashboard data elements were identified which include patient-reported outcomes, clinical data, and medications. Important design considerations include incorporation of real-time data, clearly labeled graphs, and vertical orientation to facilitate review and discussion. Prototype paper testing with 36 patients/families yielded positive feedback about the dashboard’s usefulness during clinic discussions, helped to talk about what mattered most, and informed healthcare decision making. CONCLUSIONS Our study developed a dashboard prototype that displays patient-reported and clinical data over time, along with medications, that can be used during a clinic visit to support meaningful conversations and shared decision making between JIA patients/families and their clinicians and care teams. CLINICALTRIAL N/A


2021 ◽  
pp. medethics-2020-106690
Author(s):  
Sarah Rosenwohl-Mack ◽  
Daniel Dohan ◽  
Thea Matthews ◽  
Jason Neil Batten ◽  
Elizabeth Dzeng

ObjectivesThe end of life is an ethically challenging time requiring complex decision-making. This study describes ethical frameworks among physician trainees, explores how these frameworks manifest and relates these frameworks to experiences delivering end-of-life care.DesignWe conducted semistructured in-depth exploratory qualitative interviews with physician trainees about experiences of end-of-life care and moral distress. We analysed the interviews using thematic analysis.SettingAcademic teaching hospitals in the United States and United Kingdom.ParticipantsWe interviewed 30 physician trainees. We purposefully sampled across three domains we expected to be associated with individual ethics (stage of training, gender and national healthcare context) in order to elicit a diversity of ethical and experiential perspectives.ResultsSome trainees subscribed to a best interest ethical framework, characterised by offering recommendations consistent with the patient’s goals and values, presenting only medically appropriate choices and supporting shared decision-making between the patient/family and medical team. Others endorsed an autonomy framework, characterised by presenting all technologically feasible choices, refraining from offering recommendations and prioritising the voice of patient/family as the decision-maker.ConclusionsThis study describes how physician trainees conceptualise their roles as being rooted in an autonomy or best interest framework. Physician trainees have limited clinical experience and decision-making autonomy and may have ethical frameworks that are dynamic and potentially highly influenced by experiences providing end-of-life care. A better understanding of how individual physicians’ ethical frameworks influences the care they give provides opportunities to improve patient communication and advance the role of shared decision-making to ensure goal-aligned end-of-life care.


2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 257-257 ◽  
Author(s):  
Ronan Joseph Kelly ◽  
Patrick M. Forde ◽  
Ashley Bagheri ◽  
Jenny Ahn ◽  
Arlene A. Forastiere ◽  
...  

257 Background: In 2007, the ASCO Cost of Care Task Force was established to deal with the soaring costs of cancer treatment in the United States. One of the key recommendations was that the cost of chemotherapy should be introduced into the patient-physician discussion from the outset. It is unknown if these discussions are occurring in academic Institutions and what if any is the impact on the doctor/patient relationship. Methods: The National Comprehensive Cancer Network (NCCN) Guidelines and the Eviti advisor platform were jointly used in an academic oncology center during the patient/doctor consultation to demonstrate treatment options to patients and display the costs at the time of prescribing to providers and patients alike. Questionnaires measured oncology providers attitudes to cost discussions and assessed physician satisfaction with the shared decision making process when costs are introduced into the patient/doctor relationship. Patients were interviewed before and after their doctor consultation to measure their satisfaction with the process using modifications of the shared decision making scale, satisfaction with decision scale and decisional conflict scale. Basic descriptive statistics were applied. Results: Only 5/18 oncologists (28%) reported feeling comfortable discussing costs with patients and just one (6%) admitted to regularly asking patients about financial difficulties. The majority (83%) of doctors reported that the NCCN guidelines should contain cost information. Seventy-one patients (42 females, 29 males) with metastatic breast (27%), lung (49%), and colorectal cancer (24%) have been interviewed. Interestingly, 70% of patients responded that no health care professional has ever discussed costs with them despite 57/71 (80%) rating this as very important information. The majority of patients (75%) had no negative feelings to hearing cost information. Only 4% admitted to developing significant negative feelings. Conclusions: In an era of rising co-pays, patients want cost of treatment discussions and these do not lead to negative feelings in the majority of patients. Additional training to prepare clinicians for how to discuss costs with their patients is needed.


Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 1891-1891
Author(s):  
Anna M Hood ◽  
Aimee K Hildenbrand ◽  
Joanna Rebitski ◽  
Jasmine Stallworth ◽  
Yolanda Johnson ◽  
...  

Abstract Background: Hydroxyurea (HU) is the primary medication used to prevent the significant medical and neurologic morbidities of pediatric sickle cell disease (SCD; HbSS or HbSB0 thalassemia). Despite the benefits of HU, it remains under-utilized likely due to lack of clinician knowledge/training and negative caregiver perceptions. Thus, we developed the Engage-HU randomized controlled trial (NCT03442114) as a novel approach to address HU utilization barriers. Engage-HU is designed to assess how clinicians can engage caregivers in a shared discussion that considers their values, preferences, and scientific evidence about HU. The COVID-19 pandemic has resulted in significant changes to healthcare delivery for children with SCD, as they are at increased risk of severe illness from COVID-19 infection. Given their risk status, it was recommended that patients with SCD complete telehealth visits when possible. Some families also chose to delay care because they feared their child would get infected at hospitals/healthcare clinics that care for COVID-19 positive patients. Since the lives of all families enrolled in the Engage-HU trial have been affected to some extent, we incorporated measures to capture the impact of the COVID-19 pandemic and the usability of telemedicine implementation and services. Methods: Engage-HU is a randomized control trial comparing two dissemination methods for clinicians to facilitate shared decision-making with caregivers of young children with SCD. Study outcomes include caregiver confidence in decision-making and perceptions of experiencing shared decision-making as well as HU uptake and child health outcomes. Eligible children are 0 to 5 years, candidates for HU, and their caregiver has not decided about HU in the past 3 months. The trial is being conducted at 9 sites in the United States and uses a unidirectional crossover design. The primary endpoints are caregiver decisional uncertainty and caregiver perception of shared decision-making measured using validated tools. Data will be analyzed using the intent-to-treat principle, and all participants will remain in the arm to which they were randomized. A multiple group comparison analysis will be performed to assess significant response variable differences by group randomization. The Engage-HU study aims to recruit 174 caregivers who are considering initiating HU. The trial is being conducted at 9 sites in the United States. Data collection is ongoing, and 160 caregiver-participants have been enrolled to date. Since May 2020, caregiver-participants have completed the COVID-19 Exposure and Family Impact Scales (CEFIS), which contain 2 subscales (exposure to potentially traumatic aspects of the pandemic, impact on families), and the COVID-19 telemedicine use survey during a study visit. Results: Currently, 8 of the 9 sites have collected data from 48 caregivers (93.8% mothers), most of whom (93.8%) identify as African American/Black (see Figure 1). Correlations indicated that older caregivers experienced greater exposure (Mean = 7.0, SD = 4.1, range = 1-19) to potentially traumatic aspects of the pandemic (r = .31, p = .04). Distress related to COVID-19 varied widely across the sample, for both caregivers (Mean = 5.9, SD = 2.9, range = 1-10) and children (Mean = 4.1, SD = 3.4, range = 1-10). Scores on the telemedicine usability survey were generally high, indicating that caregivers are happy with the quality of care delivered via telehealth. However, caregivers (r = .30, p = .09) and children (r = .32, p = .07) experiencing more pandemic-related distress reported less satisfaction with telehealth. Conclusion: Although Engage-HU has resumed research operations, recruitment has not reached pre-pandemic targets, as fewer eligible patients are scheduled for routine care visits at SCD clinics. Our preliminary analyses suggest a significant continued impact of the pandemic on families and general satisfaction with the quality of healthcare delivered via telemedicine. These findings indicate that targeted screenings to identify and intervene for those who demonstrate more COVID-19 pandemic-related distress are needed. Figure 1 Figure 1. Disclosures Quinn: Forma Therapeutics: Consultancy; Aruvant: Research Funding; Novo Nordisk: Consultancy; Emmaus Medical: Research Funding. Yates: Agios Pharmaceuticals: Current Employment. Badawy: Sanofi Genzyme: Consultancy; Vertex Pharmaceuticals Inc: Consultancy; Bluebird Bio Inc: Consultancy. Thompson: bluebird bio, Inc.: Consultancy, Research Funding; Baxalta: Research Funding; Biomarin: Research Funding; Celgene/BMS: Consultancy, Research Funding; CRISPR Therapeutics: Research Funding; Vertex: Research Funding; Editas: Research Funding; Graphite Bio: Research Funding; Novartis: Research Funding; Agios: Consultancy; Beam: Consultancy; Global Blood Therapeutics: Current equity holder in publicly-traded company. Smith-Whitley: Global Blood Therapeutics: Current Employment. King: National Cancer Institute: Research Funding; National Heart, Lung, and Blood Institute: Research Funding; Health Resources and Services Administration: Research Funding; Global Blood Therapeutics: Research Funding. Meier: CVS Caremark: Consultancy; Forma Therapeutic: Membership on an entity's Board of Directors or advisory committees; NovoNordisk: Membership on an entity's Board of Directors or advisory committees; Novartis,: Other: Data Safety Monitoring Board membership; NHLBI: Other: Data Safety Monitoring Board membership; Global Blood Therapeutics: Other: Steering Committee membership, grant funding; CDC,: Other: grant funding; Indiana Department of Health: Other: grant funding . Tubman: Global Blood Therapeutics: Consultancy, Research Funding; Novartis Pharmaceuticals: Honoraria, Research Funding; Forma Pharmaceuticals: Consultancy; Perkin Elmer: Honoraria. Crosby: Forma Therapeutics: Honoraria; PCORI: Research Funding; HRSA: Research Funding; Global Blood Therapeutics Panel: Honoraria; Children's Hospital of Philadelphia: Honoraria; Professional Resource Exchange: Patents & Royalties: $30-$60 every other year; SCDAA: Honoraria; NHLBI: Other: Payment for review of LRP Proposals, Research Funding. OffLabel Disclosure: Hydroxyurea has been FDA approved for the treatment of sickle cell disease for patients ages 2 years and above but NHLBI and ASH Guidelines recommend it be offered to children as young as age 9 months.


2020 ◽  
Author(s):  
Yaara Zisman-Ilani ◽  
Rana Obeidat ◽  
Lauren Fang ◽  
Sarah Hsieh ◽  
Zackary Berger

BACKGROUND Shared decision making (SDM) is a health communication model that evolved in Europe and North America and largely reflects the values and medical practices dominant in these areas. OBJECTIVE This study aims to understand the beliefs, perceptions, and practices related to SDM and patient-centered care (PCC) of physicians in Israel, Jordan, and the United States. METHODS A hypothesis-generating comparative survey study was administered to physicians from Israel, Jordan, and the United States. RESULTS A total of 36 surveys were collected via snowball sampling (Jordan: n=15; United States: n=12; Israel: n=9). SDM was perceived as a way to inform patients and allow them to participate in their care. Barriers to implementing SDM varied based on place of origin; physicians in the United States mentioned limited time, physicians in Jordan reported that a lack of patient education limits SDM practices, and physicians in Israel reported lack of communication training. Most US physicians defined PCC as a practice for prioritizing patient preferences, whereas both Jordanian and Israeli physicians defined PCC as a holistic approach to care and to prioritizing patient needs. Barriers to implementing PCC, as seen by US physicians, were mostly centered on limited appointment time and insurance coverage. In Jordan and Israel, staff shortage and a lack of resources in the system were seen as major barriers to PCC implementation. CONCLUSIONS The study adds to the limited, yet important, literature on SDM and PCC in areas of the world outside the United States, Canada, Australia, and Western Europe. The study suggests that perceptions of PCC might widely differ among these regions, whereas concepts of SDM might be shared. Future work should clarify these differences.


2020 ◽  
Author(s):  
Andreza Andrade ◽  
Anna Hayes ◽  
David McManus ◽  
Kathleen Mazor ◽  
Carl Possidente ◽  
...  

BACKGROUND The Center for Disease Control and Prevention has estimated that atrial fibrillation (AF) affects between 2.7-6.1 million people in the United States. Furthermore, those who have AF tend to have a much higher stroke risk than others. Although many individuals could largely benefit from an anticoagulant (AC), a significant majority are hesitant to start AC therapy. To further this issue, some providers tend to find themselves struggling to determine the risks and benefits of prescribing their patients AC. To assist in the communication between patient and provider preferences and knowledge regarding AC, different strategies are being used to try and solve this gap. In this research study, we have both patients and providers utilize the AFib 2getherTM app with hopes that it will create a platform for shared decision-making regarding management and treatment of AF with AC. OBJECTIVE The aims of our study are to measure usability, perceived usefulness to patients and providers, and feasibility of conducting shared decision visits using the mobile app, AFib 2getherTM. To measure provider knowledge of and confidence in utilizing a modern AF management approach and its association with the usability and feasibility. METHODS Eligible patients and providers will evaluate the AFib 2getherTM mobile app for usability and helpfulness in facilitating shared decision making on understanding the patient’s risk of stroke and whether or not to start AC. Both patients and providers will review the app and complete multiple questionnaires about the usability & feasibility of the mobile app in a clinical setting. RESULTS Enrollment in the AFib 2getherTM shared decision-making study is still ongoing for both patients and providers. CONCLUSIONS The AFib 2getherTM app emerged from the desire to increase patient and provider ability for shared decision-making around understanding risk of stroke and about AC. We hope the AFib 2getherTM mobile app will facilitate patient discussion with their cardiology and other providers. Additionally, we hope the study will help us identify a focus point in barriers that providers face when placing patients on AC. We aim to demonstrate the usability and feasibility of the app with a future goal of testing the value of our approach in a larger sample of patients and providers at multiple medical centers across the country. CLINICALTRIAL NCT04118270


2018 ◽  
pp. 1-9 ◽  
Author(s):  
Ulrike Schaede ◽  
Jörg Mahlich ◽  
Masahiko Nakayama ◽  
Hisanori Kobayashi ◽  
Yuriko Takahashi ◽  
...  

This article adds the Japanese perspective to our knowledge of shared decision-making (SDM) preferences by surveying patients with prostate cancer (PCA) and physicians in Japan. In 2015, 103 Japanese patients with PCA were asked about their SDM preferences by using an Internet-based 5-point-scale questionnaire. Concurrently, 127 Japanese physicians were surveyed regarding their perceptions of patient preferences on SDM. Drivers of preferences and perceptions were analyzed using univariable ordinal logistic regression and graphing the fitted response probabilities. Although 41% of both patients and physicians expressed and expected a desire for active involvement in treatment decisions (a higher rate than in a similar study for the United States in 2001), almost half the Japanese patients preferred SDM, but only 33% of physicians assumed this was their choice. That is, 29% of Japanese physicians underestimated patients’ preference for involvement in making treatment decisions. Patients with lower health-related quality of life (as measured by the Functional Assessment of Cancer Therapy-Prostate [FACT-P]) expressed a stronger preference for SDM. The study shows that the worse the medical situation, the more patients with PCA prefer to be involved in the treatment decision, yet physicians tend to underestimate the preferences of their patients. Perhaps in contrast to common assumptions, Japanese patients are as interested in being involved in decision making as are patients in the United States.


2020 ◽  
Vol 38 (15_suppl) ◽  
pp. e24192-e24192
Author(s):  
Debra Wujcik ◽  
Amitkumar N. Mehta ◽  
Rachel Corona ◽  
Felice Cook ◽  
Matthew Dudley ◽  
...  

e24192 Background: Non-Hodgkin lymphoma (NHL) is the fourth leading cause of cancer in the United States with 77,240 new cases and 19,940 deaths annually. Treatment options are numerous and driven by patient’s molecular profile, risk, preferences/goals, and ability to tolerate treatment. Aligning physician-patient goals of care and integrating patient preferences into a shared-decision making (SDM) model allows patients and providers to select treatment consistent with medical science and personalized to each patient. This project evaluates feasibility of a patient preferences (PP) SDM encounter tool using technology to facilitate SDM at treatment decision (TD) for patients with NHL. Methods: To date, 45 patients with NHL at a TD making point were recruited from two sites to complete a tablet-based PPSDM encounter tool. The tool includes questions about needs, decision making preferences, values and goals of care. Results are reviewed by the provider and used to facilitate SDM in treatment selection during the clinical encounter. Patients also completed measures to assess satisfaction with the TD, patient activation, and perceived achievement of desired role in SDM at 3 weeks and 3 months post TD. Results: Participants are mean age 66 years (range 23-86), 53% male, and 98% white. 47% (n = 45) preferred that their doctor share responsibility with them when deciding which treatment was best for them. 69% said they would like to make the TD together with family and close friends and 69% agreed that their spouse was the most important person in helping make a TD. 51% said spirituality did not play a part in their TD. When asked how they liked to get medical information, 67% said they wanted all the facts, but not the prognosis. 87% said they had identified a medical surrogate to make decisions, yet 31% had an advanced directive on file. 64% agreed their cancer was curable and 84% agreed that a treatment goal was to get rid of all cancer. 73% of providers used the PPSDM results in conversation with the patient and 53% indicated their patient management changed based on the PPSDM results. There was 24% concordance between patient and provider perception of how TD were made. Conclusions: Collecting patient preferences, values, and care goals prior to the clinical visit using technology is feasible in busy clinics. Although most providers used the PPSDM results and over half changed their management plan, there was low concordance between patient and provider perceptions. Final analysis will include 3 week and 3 month measures of patient activation and satisfaction.


2017 ◽  
Vol 24 (4) ◽  
pp. 857-866 ◽  
Author(s):  
Selena Davis ◽  
Abdul Roudsari ◽  
Rebecca Raworth ◽  
Karen L Courtney ◽  
Lee MacKay

Abstract Objective. This scoping review aims to determine the size and scope of the published literature on shared decision-making (SDM) using personal health record (PHR) technology and to map the literature in terms of system design and outcomes. Materials and Methods. Literature from Medline, Google Scholar, Cumulative Index to Nursing and Allied Health Literature, Engineering Village, and Web of Science (2005–2015) using the search terms “personal health records,” “shared decision making,” “patient-provider communication,” “decision aid,” and “decision support” was included. Articles (n = 38) addressed the efficacy or effectiveness of PHRs for SDM in engaging patients in self-care and decision-making or ways patients can be supported in SDM via PHR. Results. Analysis resulted in an integrated SDM-PHR conceptual framework. An increased interest in SDM via PHR is apparent, with 55% of articles published within last 3 years. Sixty percent of the literature originates from the United States. Twenty-six articles address a particular clinical condition, with 10 focused on diabetes, and one-third offer empirical evidence of patient outcomes. The tethered and standalone PHR architectural types were most studied, while the interconnected PHR type was the focus of more recently published methodological approaches and discussion articles. Discussion. The study reveals a scarcity of rigorous research on SDM via PHR. Research has focused on one or a few of the SDM elements and not on the intended complete process. Conclusion. Just as PHR technology designed on an interconnected architecture has the potential to facilitate SDM, integrating the SDM process into PHR technology has the potential to drive PHR value.


Sign in / Sign up

Export Citation Format

Share Document