scholarly journals Patients' preferences for decision making and the feeling of being understood in the medical encounter among patients with rheumatoid arthritis

2006 ◽  
Vol 55 (6) ◽  
pp. 878-883 ◽  
Author(s):  
Hirono Ishikawa ◽  
Hideki Hashimoto ◽  
Eiji Yano
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Medical Encounter

scholarly journals OP0076 HOW TO SELF-EXAMINE FOR TENDER AND SWOLLEN JOINTS: CO-DEVELOPMENT OF A TRAINING VIDEO FOR PEOPLE WITH RHEUMATOID ARTHRITIS

2021 ◽  
Vol 80 (Suppl 1) ◽  
pp. 41.1-41
Author(s):  
C. Sharp ◽  
K. Staniland ◽  
T. Cornell ◽  
W. Dixon
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Disease Activity ◽  
Remote Monitoring ◽  
British Society ◽  
Patient Report Outcome Measure ◽  
Nurse Consultant ◽  
Patient Reported ◽  
Self Examination ◽  
Remote Consultations

Background:COVID-19 has catalysed the transformation of healthcare services, with outpatient services increasingly dependent upon remote models of care. Healthcare professionals now have to make clinical assessments based on remote patient examinations. The number of tender and swollen joints a patient has drives decision-making in RA, making it particularly important that people with RA and HCPs have a shared understanding of these examinations.Even before remote consultations became widespread, long gaps between clinic visits create challenges in enabling HCPs to form an accurate picture of disease activity over time. The REMORA (REmote MOnitoring of Rheumatoid Arthritis) app aims to address this issue by asking people with RA to track disease activity, including counting the number of tender or swollen joints, weekly(1). Data are integrated into the electronic patient record for clinicians to access with patients during clinical consultations. As part of the supporting materials for the REMORA app, we planned to develop a video to train people with RA how to examine their own joints. This video may now help meet the need created by the recent expansion in remote consultations.Objectives:To describe the co-production, implementation and evaluation of a video to train patients how to examine their own joints.Methods:The need for the video to fill a current gap in patient education was identified by the REMORA patient and public involvement and engagement (PPIE) group. A core working group comprising the PPIE lead, a nurse consultant, rheumatology clinicians, project and communications managers was formed. A storyboard was drafted and feedback gained from the PPIE group and wider REMORA team. Images were sourced from licenced suppliers, or co-developed with the PPIE group where necessary. No ethical approval was required as the PPIE group lead was acting as an equal member of the research term. Written informed consent was gained from video participants. Filming took place between two national lockdowns during the COVID-19 pandemic, providing a challenge to ensure social distancing and requiring the use of masks.Results:A 15 minute video to train people with RA to self-examine for tender and swollen joints was developed. An introduction outlining the rationale behind self-examination is followed by a nurse consultant coaching an RA patient in individual joint self-examination. Shoulders, elbows, wrists, metacarpophalangeal joints, proximal interphalangeal joints and knees are included, all of which are counted in disease activity scores.Early feedback from stakeholders has been overwhelmingly positive. The video will be publicly available on YouTube from February 2021. A survey of patients and HCPs aims to obtain more formal feedback on the video, with a view to a further iteration, if required. Leading national organisations in rheumatology will promote the video, as it supports national programmes including the British Society for Rheumatology national early inflammatory arthritis audit and ePROMS (electronic patient report outcome measure) platform, both of which include entry of patient reported tender and swollen joint counts.Conclusion:This video was co-designed by people with RA, aiming to support self-examination of tender and swollen joint counts. Hits on YouTube and survey responses will help assess its impact. Evaluation to assess whether the video affects patients’ ability to self-examine for tender and swollen joints before and after watching is planned. We hope the video will support remote consultations and help people with arthritis to better understand and self-manage their arthritis, and to have shared decision making conversations with their clinicians.References:[1]Austin L, Sharp CA, van der Veer SN, Machin M, Humphreys J, Mellor P, et al. Providing ‘the bigger picture’: benefits and feasibility of integrating remote monitoring from smartphones into the electronic health record: findings from the Remote Monitoring of Rheumatoid Arthritis (REMORA) study. Rheumatology. 2020;59(2):367-78.Disclosure of Interests:Charlotte Sharp: None declared, Karen Staniland: None declared, Trish Cornell Shareholder of: shares in Abbvie, Employee of: Abbvie, working as a Rheumatology Nurse Consultant, Will Dixon Consultant of: Google and Abbvie, unrelated to this work.

It may help you to know. . .": The early phase qualitative development of a rheumatoid arthritis goal elicitation tool

2021 ◽  
pp. jrheum.201615
Author(s):  
Julie Kahler ◽  
Ginnifer Mastarone ◽  
Rachel Matsumoto ◽  
Danielle ZuZero ◽  
Jacob Dougherty ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Shared Decision Making ◽  
Treatment Guidelines ◽  
Training Session ◽  
Clinic Visit ◽  
Shared Decision ◽  
Communication Tool ◽  
Group Setting ◽  
Patient Goals

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.

Rheumatoid Arthritis Decision Making

2011 ◽  
Vol 17 (5) ◽  
pp. 231-235 ◽  
Author(s):  
Katie Garneau ◽  
Maura Iversen ◽  
Saira Jan ◽  
Kavita Parmar ◽  
Peter Tsao ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making

scholarly journals Call for action: how to improve use of patient-reported outcomes to guide clinical decision making in rheumatoid arthritis

2018 ◽  
Vol 38 (6) ◽  
pp. 935-947 ◽  
Author(s):  
Bruno Fautrel ◽  
Rieke Alten ◽  
Bruce Kirkham ◽  
Inmaculada de la Torre ◽  
Frederick Durand ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Patient Reported Outcomes ◽  
Clinical Decision Making ◽  
Clinical Decision ◽  
Patient Reported

scholarly journals Perceived clinical utility of a test for predicting inadequate response to TNF inhibitor therapies in rheumatoid arthritis: results from a decision impact study

2020 ◽  
Author(s):  
Dimitrios A. Pappas ◽  
Christine Brittle ◽  
James E. Mossell ◽  
Johanna B. Withers ◽  
Jeraldine Lim-Harashima ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Clinical Utility ◽  
Tumor Necrosis Factor Inhibitor ◽  
Medical Decision ◽  
Inadequate Response ◽  
Tnf Inhibitor ◽  
Financial Outcomes ◽  
Factor Inhibitor ◽  
Therapeutic Decision Making

AbstractTumor necrosis factor inhibitor (TNFi) therapies are often the first biologic therapy used to treat rheumatoid arthritis (RA) patients. However, a substantial fraction of patients do not respond adequately to TNFi therapies. A test with the ability to predict response would inform therapeutic decision-making and improve clinical and financial outcomes. A 32-question decision-impact survey was conducted with 248 rheumatologists to gauge the perceived clinical utility of a novel test that predicts inadequate response to TNFi therapies in RA patients. Participants were informed about the predictive characteristics of the test and asked to indicate prescribing decisions based on four result scenarios. Overall, rheumatologists had a favorable view of the test: 80.2% agreed that it would improve medical decision-making, 92.3% said it would increase their confidence when making prescribing decisions, and 81.5% said it would be useful when considering TNFi therapies. Rheumatologists would be more likely to prescribe a TNFi therapy when the test reported that no signal of non-response was detected (79.8%) and less likely to prescribe a TNFi therapy when a signal of non-response was detected (11.3%–25.4%). Rheumatologists (84.7%) agreed that payers should provide coverage for such a test. This study shows that rheumatologists support the clinical need for a test to predict inadequate response to TNFi therapies. Test results were perceived to lead to changes in prescribing behaviors as results instill confidence in the ordering rheumatologist.

scholarly journals Evolution of Patient Decision-Making Regarding Medical Treatment of Rheumatoid Arthritis

2016 ◽  
Vol 68 (3) ◽  
pp. 318-324 ◽  
Author(s):  
Alexandra L. Mathews ◽  
Adriana Coleska ◽  
Patricia B. Burns ◽  
Kevin C. Chung
Keyword(s):  
Rheumatoid Arthritis ◽  
Decision Making ◽  
Medical Treatment ◽  
Patient Decision Making ◽  
Patient Decision

A randomized controlled trial of a self-administered, online decision-aid (“Navya Patient Preference Tool”) to reduce decisional conflict in women with early breast cancer.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 7033-7033
Author(s):  
Shalaka P Joshi ◽  
Lakshmi Ramarajan ◽  
Ojas Deshpande ◽  
Elizabeth Fernandes ◽  
Vaibhav Vanmali ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Decision Making ◽  
Randomized Controlled Trial ◽  
Decision Aid ◽  
Controlled Trial ◽  
Decisional Conflict ◽  
Shared Decision ◽  
Breast Cancer Patients ◽  
Medical Encounter ◽  
Randomized Controlled

7033 Background: Shared decision making to confront choices with clinical equipoise, has been the privilege of those patients with access to time intensive consults with oncologists. We conducted a randomized controlled trial for breast cancer patients to use an online, self-administered, out-of-the-medical-encounter decision aid (DA) to choose between breast conserving surgery (BCS) and mastectomy. Methods: Navya Patient Preference Tool (Navya PPT) is a multilingual DA based on adaptive conjoint analysis of tradeoffs between cost, adverse effects of radiation, and breast conservation. Prior analysis established high internal reliability and external validity of the Navya PPT. Eligible cT1/2, cN0 breast cancer patients planned for surgery were block randomized, in 1:1:1 ratio, to receive the research questionnaire (RQ) to measure decisional conflict on choice of surgery (control, arm 1), Navya PPT followed by RQ (experimental, arm 2) or Navya PPT followed by RQ administered with key male family member (experimental, arm 3). Groups were stratified with respect to age, socio-economic status (SES) and educational level. The study was powered to detect a decrease in Decisional Conflict Index (DCI) by 0.25 (β-0.8, two sided α- 0.01). Results: Between June 2017 and December 2019, 247/255 patients were randomized to arm 1 (83), arm 2 (84), and arm 3 (80). Median age was 48 years (IQR 23-76), and median pT size was .5 cm (0.5-6 cm). 59% of patients were middle or lower SES and 46.2% had ≤ 12th grade education. DCI was significantly reduced in arm 2 as compared with arm 1 (1.34 vs. 1.65, Cohen’s d 0.49 (± 0.31) p<0.05) as well as in arm 3 as compared with arm 1 (1.30 vs. 1.65, Cohen’s d 0.54 (± 0.31) p<0.05). 80% (± 6%) of patients underwent surgery of choice as determined by Navya PPT. BCS rate was similar in all three arms (85.2, 88.9 and 86.5% respectively (p=0.779). Conclusions: Online, self-administered, adaptive DAs used out of the medical encounter can reduce decisional conflict and increase access to shared decision making for every patient; especially in practices with low doctor to patient ratios. Clinical trial information: IEC/0116/1619/001 .

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