scholarly journals PARE0031 AN MHEALTH TOOL FOR SHARED DECISION MAKING FOR PATIENTS WITH RHEUMATISM AND ARTHRITIS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1301.1-1302
Author(s):  
Y. Koumpouros ◽  
A. Pappa

Background:Patient empowerment is a key element of patient-centred healthcare according to WHO. In the same direction, the Institute of Medicine in the United States supports actions to engage patients in their health care decision in a new patient-centered care model. Patient-centred care models have demonstrated better quality of care as well as potential long-term cost-efficiencies. However, nowadays, many patients are still struggling to become equal partners in care. Patients with chronic conditions, such as rheumatoid arthritis, are often referred to as the most under-used resource in the health system. Shared decision making is a collaborative process enabling a clinician and patient to participate jointly in making a health decision about the treatment having discussed the options, benefits and harms, while considering also the patient’s values and experiences.Objectives:The objective of the current research was to design a tool that will facilitate the shared decision making regarding the treatment approach, based on real life evidences from the patient. The focus of the application is on the pain assessment of patients suffering from rheumatism and arthritis. The proposed solution utilizes the latest technological innovations to support patients and clinicians on their decisions and assessment strategy on a more accurate base.Methods:The design process followed a user-centered approach by involving a multidisciplinary team of experts (an mHealth expert, a behavioural scientist, and two physicians). An iterative design process focused on the different end-users (patients and clinicians) and their actual needs on the topic concerned. In each phase, the experts involved the end-users to create a highly usable tool. The aim was to capture and address the whole user experience. An evaluation phase took place for three months.Results:The design team brought the users into every stage of the design process. Twenty patients and three physicians (one pathologist, one general surgeon and an expert in pharmacology and clinical pharmacology) participated and evaluated the modules implemented. The final solution consists of an application running on Android operating system in any smart phone. The final application supports the patient to enter all necessary information about: (i) the pain he/she is feeling, (ii) the medication he/she is receiving, and (iii) his/her life style.Conclusion:After a three months period of continuous use of the application from the participants during the evaluation phase, they reported very encouraging results. In terms of usage, the patients found it user friendly, easy to learn, easy to use, and easily accessible. They also consider it really useful in order to keep track of their progress and assess the treatment and medications they receive relevant to the pain they feel. The physicians involved in the evaluation of the application found it very useful and with significant potential for daily use by clinical staff to evaluate the therapies given to their patients. All users concluded that the developed app can help towards a more accurate and acceptable treatment based on shared decision, exploiting the collected evidences.References:[1]Angelmar R, Bermann BP. Patient empowerment and efficient health outcomes. Financing sustainable healthcare in Europe. 2007:139–162.[2]Hargraves IG, Montori VM, Brito JP, et al. Purposeful SDM: A problem-based approach to caring for patients with shared decision making. Patient Education and Counseling. 102(10), 2019, p. 1786-1792.[3]Légaré F, Stacey D, Brière N, et al. Healthcare providers’ intentions to engage in an interprofessional approach to shared decision-making in home care programs: a mixed methods study.J Interprof Care2013; 27: 214-222[4]McWilliams DF, Walsh DA. Pain mechanisms in rheumatoid arthritis. Clin Exp Rheumatol. 2017 Sep-Oct;35 Suppl 107(5):94-101.[5]National Research Council. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academies Press, 2001.[6]Hoffmann TC, Légaré F, Simmons MB, et al. Shared decision making: what do clinicians need to know and why should they bother? Med J Aust 2014; 201 (1): 35-39.Disclosure of Interests:None declared

2020 ◽  
Vol 15 (1) ◽  
Author(s):  
Isabelle Scholl ◽  
Sarah Kobrin ◽  
Glyn Elwyn

Abstract Background Despite decades of ethical, empirical, and policy support, shared decision-making (SDM) has failed to become standard practice in US cancer care. Organizational and health system characteristics appear to contribute to the difficulties in implementing SDM in routine care. However, little is known about the relevance of the different characteristics in specific healthcare settings. The aim of the study was to explore how organizational and health system characteristics affect SDM implementation in US cancer care. Methods We conducted semi-structured interviews with diverse cancer care stakeholders in the USA. Of the 36 invited, 30 (83%) participants consented to interview. We used conventional content analysis to analyze transcript content. Results The dominant theme in the data obtained was that concerns regarding a lack of revenue generation, or indeed, the likely loss of revenue, were a major barrier preventing implementation of SDM. Many other factors were prominent as well, but the view that SDM might impair organizational or individual profit margins and reduce the income of some health professionals was widespread. On the organizational level, having leadership support for SDM and multidisciplinary teams were viewed as critical to implementation. On the health system level, views diverged on whether embedding tools into electronic health records (EHRs), making SDM a criterion for accreditation and certification, and enacting legislation could promote SDM implementation. Conclusion Cancer care in the USA has currently limited room for SDM and is prone to paying lip service to the idea. Implementation efforts in US cancer care need to go further than interventions that target only the clinician-patient level. On a policy level, SDM could be included in alternative payment models. However, its implementation would need to be thoroughly assessed in order to prevent further misdirected incentivization through box ticking.


2021 ◽  
pp. jrheum.201615
Author(s):  
Julie Kahler ◽  
Ginnifer Mastarone ◽  
Rachel Matsumoto ◽  
Danielle ZuZero ◽  
Jacob Dougherty ◽  
...  

Objective Treatment guidelines for rheumatoid arthritis (RA) include a patient-centered approach and shared decision making which includes a discussion of patient goals. We describe the iterative early development of a structured goal elicitation tool to facilitate goal communication for persons with RA and their clinicians. Methods Tool development occurred in three phases: 1) clinician feedback on the initial prototype during a communication training session; 2) semi-structured interviews with RA patients; and 3) community stakeholder feedback on elements of the goal elicitation tool in a group setting and electronically. Feedback was dynamically incorporated into the tool. Results Clinicians (n=15) and patients (n=10) provided feedback on the tool prototypes. Clinicians preferred a shorter tool de-emphasizing goals outside of their perceived treatment domain or available resources, highlighted the benefits of the tool to facilitate conversation but raised concern regarding current constraints of the clinic visit. Patients endorsed the utility of such a tool to support agenda setting and prepare for a visit. Clinicians, patients, and community stakeholders reported the tool was useful but identified barriers to implementation that the tool could itself resolve. Conclusion A goal elicitation tool for persons with RA and their clinicians was iteratively developed with feedback from multiple stakeholders. The tool can provide a structured way to communicate patient goals within a clinic visit and help overcome reported barriers, such as time constraints. Incorporating a structured communication tool to enhance goal communication and foster shared decision making may lead to improved outcomes and higher quality care in RA.


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.


2014 ◽  
Vol 41 (7) ◽  
pp. 1290-1297 ◽  
Author(s):  
Jennifer L. Barton ◽  
Laura Trupin ◽  
Chris Tonner ◽  
John Imboden ◽  
Patricia Katz ◽  
...  

Objective.Treat-to-target guidelines promote shared decision making (SDM) in rheumatoid arthritis (RA). Also, because of high cost and potential toxicity of therapies, SDM is central to patient safety. Our objective was to examine patterns of perceived communication around decision making in 2 cohorts of adults with RA.Methods.Data were derived from patients enrolled in 1 of 2 longitudinal, observational cohorts [University of California, San Francisco (UCSF) RA Cohort and RA Panel Cohort]. Subjects completed a telephone interview in their preferred language that included a measure of patient-provider communication, including items about decision making. Measures of trust in physician, education, and language proficiency were also asked. Logistic regression was performed to identify correlates of suboptimal SDM communication. Analyses were performed on each sample separately.Results.Of 509 patients across 2 cohorts, 30% and 32% reported suboptimal SDM communication. Low trust in physician was independently associated with suboptimal SDM communication in both cohorts. Older age and limited English proficiency were independently associated with suboptimal SDM in the UCSF RA Cohort, as was limited health literacy in the RA Panel Cohort.Conclusion.This study of over 500 adults with RA from 2 demographically distinct cohorts found that nearly one-third of subjects report suboptimal SDM communication with their clinicians, regardless of cohort. Lower trust in physician was independently associated with suboptimal SDM communication in both cohorts, as was limited English language proficiency and older age in the UCSF RA Cohort and limited health literacy in the RA Panel Cohort. These findings underscore the need to examine the influence of SDM on health outcomes in RA.


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


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