Author Interviews, Columbia, Rheumatology / 06.06.2023

MedicalResearch.com Interview with: W. Benjamin Nowell PhD Director of Patient-Centered Research at Global Healthy Living Foundation Columbia University in the City of New York New York, New York MedicalResearch.com: What is the background for this study? Response: Given that lab tests are an important part of rheumatoid arthritis (RA) diagnosis and monitoring, people living with the condition want and need to understand their lab results –also known as blood work – for patient-centered shared decision making about treatment. The presentation titled, “Patient Perceptions of Rheumatoid Arthritis Blood Work and Utility of a Test Predicting Response to New Medication: A Cross-sectional Survey in the ArthritisPower,” presented at the 76th EULAR European Congress of Rheumatology (June 2, 2023 in Milan, Italy) includes results from a recent ArthritisPower survey (n=405) that asked patients to share their perceptions about RA bloodwork, reasons their doctor orders these tests, and how results are used. (more…)
Author Interviews, COVID -19 Coronavirus, Mental Health Research, Rheumatology / 07.06.2022

MedicalResearch.com Interview with: Kelly Gavigan, MPH Director, Data Management and Analytics Global Healthy Living Foundation MedicalResearch.com:  What is the background for this study?  Response: COVID-19 is of particular concern for people living with autoimmune and rheumatic disease, not only because they have an increased risk of infection but also because of the heightened sense of isolation due to strict social distancing protocols that many patients continue to follow through today. As a result, we wanted to better understand if symptoms among the autoimmune and rheumatic disease patients in our ArthritisPower research registry were impacted throughout the COVID-19 pandemic. We previously conducted and reported on an analysis of patient reported outcome data from the ArthritisPower registry between the months of January 2020 to April 2021 at the American College of Rheumatology Convergence in 2021. We conducted a follow-up analysis between May and December 2021, which is our area of focus in this particular abstract. (more…)
Author Interviews, Rheumatology / 10.11.2021

MedicalResearch.com Interview with: Kelly Gavigan, MPH Manager, Research and Data Science CreakyJoints and Global Healthy Living Foundation MedicalResearch.com: What is the background for this study? Response: We understood that COVID-19 is of particular concern for people living with autoimmune and rheumatic disease because they are at increased risk of infection, and this created a heightened sense of isolation due to the strict social distancing protocols that so many patients have followed. As a result, we wanted to better understand if symptoms among the autoimmune and rheumatic disease patients in our ArthritisPower research registry were impacted throughout the COVID-19 pandemic. We analyzed patient reported outcome scores for mental, social, and physical health measures between the months of January 2020 and April 2021. We tested the null hypothesis that there was no change in monthly average assessment scores across the 15-month observation period. (more…)
Author Interviews, COVID -19 Coronavirus, Rheumatology / 10.11.2021

MedicalResearch.com Interview with: Courtney K. Wells, PhD, MSW, MPH, LGSW Assistant Professor & Field Coordinator Department of Social Work University of Wisconsin-River Falls and member of CreakyJoints MedicalResearch.com: What is the background for this study? Response: This study was initiated because early in the pandemic there was little information available regarding quality of life and the day-to-day activities of patients with rheumatic conditions. We were particularly interested in patients’ psychosocial experiences and how they made decisions about their health. We found that participants’ understanding of their risk for COVID-19 played a key role in their decision making processes. At the beginning of the pandemic, many participants viewed themselves as being high risk because of their condition and/or medications and took extreme precautions. These precautions isolated them from their family, friends, and healthcare, all of which negatively affected their physical and mental health. As the pandemic went on, participants described an exhausting balancing act between their risk for COVID-19, their rheumatic condition, and their mental health. Because we did interviews over 6 months, we saw participants shifting their priorities towards their mental health as more information became available and the vaccine emerged. We also learned that rheumatology patients from BIPOC ( Black, Indigenous, People of Color) and immigrant communities experienced unique stressors during the pandemic such as barriers to accessible and trusted healthcare providers and increased experiences of racism. (more…)
Author Interviews, Rheumatology / 14.11.2019

MedicalResearch.com Interview with: Benjamin Nowell, Ph.D. Director of Patient-Centered Research CreakyJoints, Principal Investigator of ArthritisPower  MedicalResearch.com: What is the background for this study? Response: Patient-reported outcomes (PROs) are important indicators of treatment effectiveness, but little is known about which PRO measures that patients find the most important to track for their disease management and to evaluate treatment effectiveness and health outcomes. In this study, we used the ArthritisPower Research Registry to evaluate which PROs patients with rheumatological conditions voluntarily selected to understand their experience of disease.  (more…)
Author Interviews, Rheumatology / 11.11.2019

MedicalResearch.com Interview with: Kelly Gavigan, MPH Manager, Research and Data Science CreakyJoints  MedicalResearch.com: What is the background for this study? Response: Over the past fifteen years, there have been significant improvements in quality of life among people living with rheumatic and musculoskeletal disease with the introduction of biologics and targeted therapies. However, despite a variety of treatments to try, patients often seek non-pharmacological alternative and complementary treatments, such as marijuana for medical use (MMU), to help manage their condition and symptoms. MMU is becoming increasingly available in the United States as different states legalize it under specific circumstances. Legal or not, according to a survey conducted by CreakyJoints using the ArthritisPower Research Registry (n=1,059 participants), people with arthritis are trying marijuana for medical use.  (more…)
Author Interviews, Pain Research, Rheumatology / 12.09.2019

MedicalResearch.com Interview with: W. Benjamin Nowell, Ph.D. Director of Patient-Centered Research CreakyJoints, Principal Investigator of ArthritisPower MedicalResearch.com: What is the background for this study? Response: Over the past fifteen years, the treatment options for people diagnosed and living with rheumatoid arthritis (RA) have grown. There are now many medications (particularly biologic disease-modifying antirheumatic drugs, or bDMARDs) proven to improve disease symptoms and immune system over activity, thereby reducing inflammation and joint damage. The American College of Rheumatology recommends a treat-to-target approach, which has the patient and rheumatologist setting goals for treatment effectiveness and making adjustments over time to meet those goals. This study aimed to determine if rheumatoid arthritis patients are satisfied with their treatment. The goal of this study was to identify the following: patients’ satisfaction with current RA treatment, the current unmet needs perceived by patients with rheumatoid arthritis in the United States, the symptoms of rheumatoid arthritis that are most bothersome to patients, and the impact of symptoms on function and quality of life that may lead patients to need alternative treatments.  (more…)
Author Interviews, Occupational Health, Rheumatology / 01.11.2018

MedicalResearch.com Interview with: Dr. W. Benjamin Nowell, Ph.D. Director of Patient-Centered Research CreakyJoints, study co-author Co-principal investigator of ArthritisPower MedicalResearch.com: What is the background for this study? What are the main findings? Response: Rheumatoid Arthritis (RA) can diminish patients’ work productivity and increase the risk of long-term disability, economic insecurity and worsening health, but limited research informs these issues. The purpose of our study was to examine associations between patients’ RA disease activity and their productivity and workplace support, using real-world data from the ArthritisPower research registry. Our study looked at a sample of participants with RA who had a history of or current treatment with non-biologic and/or biologic disease-modifying antirheumatic drugs (DMARD) (n=296). Among the study sample, 74 percent had high disease activity (HDA) as determined by RAPID3 (>12), a common measure of disease activity in RA.
  • High disease activity was associated with lower education (p<0.001) and higher likelihood of disability (9%, p<0.001) compared to those without high disease activity.
    • Patients with HDA missed more days of work than non-HDA patients (mean: 6.1 vs 3.8 days, respectively; p=0.03), but non-HDA participants reported more days off due to medical appointments (2.6 vs 1.2 days, respectively) while HDA patients missed more days due to RA treatment side effects (mean: 0.5 vs 0.1 days, respectively).
  • Based on scores from the Work Productivity and Activity Impairment (WPAI) questionnaire, RA seems to affect work productivity to a greater extent in participants with HDA than without (WPAI scores 5.3 and 3.3, respectively; p<0.001). Participants who were not currently employed reported having more physically demanding tasks (e.g. heavy load lifting) and less workplace flexibility (e.g. working from home) in their most recent paid position than currently employed participants.
  • However, in a multivariate regression analysis, we found that participants who could request changes in work start and stop times on a daily basis were 2.9 (95% CI: 1.53, 5.46) times more likely to be unemployed (adjusting for age, disease activity, and satisfaction with social participation) than those unable to make this request (p<0.0001).
About ArthritisPower: Created by CreakyJoints and supported by a multiyear, multimillion dollar investment by the Patient-Centered Outcomes Research Institute (PCORI), ArthritisPower is the first-ever patient-centered research registry for joint, bone, and inflammatory skin conditions. The free ArthritisPower mobile and desktop application allows patients to track and share their symptoms and treatments while also participating in voluntary research studies in a secure and accessible manner. ArthritisPower Patient Governors serve as gatekeepers for researchers who seek access to registry data or solicit the community to participate in unique, voluntary studies. To learn more and join ArthritisPower, visit www.ArthritisPower.org.  (more…)