In this study, ten patients with Rheumatoid Arthritis (RA) completed 8 hours of training on evidence-based medicine and guideline development and formed a patient panel to apply the Grading of Recommendations, Assessment, Development and Evaluation (GRADE) methodology to formulate recommendations for a survey containing clinical questions created by a physician-dominated panel. Fraenkel et al. reports that patients and physicians developed the same recommendations for most questions and that additional experiences are necessary to determine panel composition for future guidelines.
The objective of this study was to develop a patient reported measure to capture the overall experience, including benefits and harms, of treatment using Rheumatoid Arthritis (RA) as an example. The authors utilized Trajectory Mapping to organize adverse events and improvements from treatments to create a hierarchy of patient experiences. The results of this study help to contextualize what types of adverse events patients are willing to tolerate for levels of improvement when trying treatments.
This chapter of “21st Century Patient Registries: Registries for Evaluating Patient Outcomes: A User’s Guide: 3rd Edition” by Daughtery et al. discusses the growing focus on patient-centeredness in clinical research, medical care, and regulatory sciences which can lead to the increase of availability and dissemination of evidence that can be used to inform health care decision-making. There are some challenges in the use of patient registries as highlighted by patients such as accessibility of participation, translation of non-English materials, and privacy concerns that should be addressed. This chapter provides an overview of important topics relating to patient-centeredness in registries, engaging patients as stakeholders, the use of digital health technologies, and other patient-centric designs.
Methotrexate (MTX) is a prominent treatment for patients with Rheumatoid Arthritis (RA) but its effectiveness may be impacted by bothersome side effects and lack of tolerability. This cross-sectional study by Curtis et al. surveyed RA patients who were members of CreakyJoints who participated in subcutaneous or oral MTX treatment in the last 12 months. 382 patients were surveyed, and they reported side effects such as diarrhea, fatigue, malaise, and hair loss. Higher doses of MTX were associated with a greater likelihood of more side effects.
Social media, such as Facebook, blogs, and discussion boards, may be a useful resource to complement traditional data sources in understanding and treating inflammatory arthritis. In this study, Curtis et al, used the TREATO platform to search publicly-available data mentioning inflammatory arthritis. The researchers found 785,656 posts related to arthritis predominantly in the U.S. (75%) and authored by patients (87%). The most common sources of social media posting were from Facebook, the Arthritis Foundation, RemedySpot, DailyStrength, and RA Warrior.
This is a correction to the previously published article “Understanding the Bariatric Patient Perspective in the National Patient-Centered Clinical Research Network (PCORnet) Bariatric Study”. This correction notes that the original article had the incorrect listing of author names and affiliations. This correction reflects the correct author names and affiliations.
Coetzee et al. reports that nonprofit funders, including disease advocacy and patient-focused organizations, play an important role in the promotion and implementation of data sharing policies in clinical research trials which can help to drive policies and influence research culture. Eight goals are highlighted for nonprofit funders of clinical trials: encouraging the co-development of data sharing policies with patient and lay communities, incorporate data sharing concepts and policies as early as possible in clinical trials, use transparent and FAIR approval processes for data access, promote the development of a sustainable and feasible data sharing infrastructure, promote and support the adoption of standards, standard language, and common data elements, include incentives and enforce requirements in funding structures, provide funding for data sharing, and incorporate previous data sharing as a measure of impact. These goals promote a data sharing toolkit for nonprofit funders.
This article from Pediatric Rheumatology by Carandang et al. describes topics that concern adolescent and young adult women with pediatric rheumatic diseases and their parents about reproductive health. Young women and their parents were dissatisfied with the availability, quantity, and quality of reproductive health information they received concerning their rheumatic diseases and participants identified the need for more information on how their rheumatic disease affects their reproductive health. Understanding these needs of young women is the first step in understanding the patient perspective of reproductive health and more research is needed to address these concerns.