The ArthritisPower Team, Author at PatientSpot

Identifying patient decisions and related information needs during decision making related to total knee arthroplasty

Nowell et al. set out to understand patient decision making in total knee arthroplasty as there is limited research in this area. Focus groups were formed within an online community and identified decisions about total knee arthroplasty beyond the decision to have the surgery itself. An online survey was used to determine relative importance of five major decisions. Patients reported that they felt they did not have enough information to make important decisions of surgeon, device type, surgical approach, facility, or timing for their surgery.

The ArthritisPower Team In Research Registry

Stakeholders’ Views on Data Sharing in Multicenter Studies

The aim of this study was to understand stakeholders’ views on data sharing in multicenter comparative effectiveness research studies and the value of privacy-protecting methods. 11 semi-structured interviews were held with patients, researchers, Institutional Review Board staff, multicenter research governance experts, and healthcare system leaders within 5 US Stakeholder groups. Stakeholders were open to data sharing in multicenter studies that offer value and minimize security risks. Cost and security risks were the primary influences against data sharing.

The ArthritisPower Team In Research Registry

Validity of Privacy-Protecting Analytical Methods That Use Only Aggregate-Level Information to Conduct Multivariable-Adjusted Analysis in Distributed Data Networks.

Protecting privacy while adequately adjusting for a large number of covariates poses methodological challenges for distributed data networks that can enable large-scale epidemiologic studies. Using 2 empirical examples, Li et al. determined that when used in conjunction with confounder summary scores, several combinations of data-sharing approaches and confounding adjustment methods allow researchers to perform multivariable-adjusted analysis using only aggregate-level information from participating sites and produce results identical to or comparable to those from pooled individual-level data analysis which help to protect privacy.

The ArthritisPower Team In Research Registry

Privacy-Protecting Analytical Methods Permit Multivariable-Adjusted Analysis Using Only Aggregate-Level Data in Multi-Center Distributed Data Networks: Results from Empirical Analyses.

The ArthritisPower Team In Psoriatic Arthritis, Rheumatoid Arthritis

Contraception methods used by women with rheumatoid arthritis and psoriatic arthritis

In Clinical Rheumatology, Leverenz et al. report a study in which they investigated contraceptive methods used in young women with Rheumatoid Arthritis (RA) and Psoriatic Arthritis (PsA) and correlated the efficacy of the contraceptive methods with the use of concomitant rheumatic medications. Of the 164 women included, women with RA and PsA reported similar utilization of highly effective contraception methods and effective methods, but different utilization of ineffective methods and no methods. These proportions remained similar across subgroups taking methotrexate, anti-TNF biologics, and novel medications. Women with PsA were more likely to report no methods of contraception.

The ArthritisPower Team In Rheumatoid Arthritis

Preference Phenotypes Can Be Used to Support Shared Decision-Making at Point-of-Care for Patients with Rheumatoid Arthritis: A Proof of Concept Study

Hsiao et al. conducted a pretest/post test study with RA patients who had outpatient visits using 5 phenotypic groups that clarified patient desires. Clinicians were introduced to the phenotypic groups. The authors found greater evidence of shared decision-making in the post test phase of the study as patients were offered more choices and more visits in which patients vocalized their values and/or preferences and providers were more likely to base their recommendations on patients’ values and/or preferences. Allowing patients to consider a set of preference phenotypes can support shared decision-making.

The ArthritisPower Team In COVID-19

Social Distancing, Health Care Disruptions, Telemedicine Use, and Treatment Interruption During the COVID-19 Pandemic in Patients With or Without Autoimmune Rheumatic Disease

Impacts from the COVID-19 pandemic were studied in patients with and without autoimmune rheumatic diseases. The authors aimed to compare concerns, social distancing, healthcare disruptions, and telemedicine use in these patients. Concerns about COVID-19 and social distancing behaviors were similar in both groups although patients receiving a biologic or Janus kinase (JAK) inhibitor reported greater concerns and were more likely to avoid leaving the house and engage in social activities. Patients with autoimmune rheumatic diseases were less likely to avoid office visits with similar telemedicine use. Missed office visits were strongly associated with interruptions in immunomodulatory medication.

The ArthritisPower Team In Rheumatoid Arthritis

Barriers to Treatment Optimization and Achievement of Patients’ Goals: Perspectives from People Living with Rheumatoid Arthritis Enrolled in the Arthritispower Registry.

In Arthritis Research & Therapy, Gavigan et al. report on Rheumatoid Arthritis (RA) patients’ beliefs on factors that influence their physician’s treatment decisions, reasons patients tolerate sub-optimal disease control, and perceived barriers to treatment optimization. Eligible participants were enrolled in the ArthritisPower registry and completed a survey on barriers to treatment optimization and patient-reported outcomes on symptoms of fatigue, sleep disturbance, and physical function. Most participants trusted their doctor’s treatment decisions and prioritized their physician’s treatment goals over their own.

The ArthritisPower Team In Rheumatoid Arthritis

Preference phenotypes to facilitate shared decision-making in rheumatoid arthritis

To facilitate better shared decision-making at the point of care for patients failing methotrexate monotherapy, Fraenkel et al. developed preference phenotypes or profiles to measure the preferences of patients with Rheumatoid Arthritis (RA) for triple therapy, biologics, and Janus Kinase (JAK) inhibitors. The authors surveyed 1,273 participants and developed 5 groups to classify patients: most strongly impacted by the cost of medication, most strongly influenced by the risk of bothersome side effects, most concerned with the risk of very rare side effects, strongly prefer oral over parenteral medications, and most strongly and equally influenced by onset of action and the risk of serious infections. These results show that there is variability in patients’ values, and it is important to use a shared decision-making approach in implementing treatment.

The ArthritisPower Team In Publications

The Impact of Information Presentation Format on Preference for Total Knee Replacement Surgery

Because patients can have poor understanding of outcomes related to total knee replacement (TKR) surgery, Fraenkel et al. studied the impacts of different presentation formats in patients’ understanding of TKR outcomes. 648 members of an online arthritis network participated in this study and were randomly assigned to one of the following presentation groups: numeric only, numeric with an icon array, numeric with a set of 50 images, or numeric with a functional spinner. Preferences for TKR were measured before and immediately after viewing the presentation and knowledge was assessed for each participant. The authors found that adding graphic information to descriptive statistics strengthens preference for TKR.