CreakyJoints Members Describe How Self-Advocacy Improved Their Arthritis Outcomes in Eight Testimonials Presented as Part of the Patient Perspectives Program of the American College of Rheumatology Convergence 2022
Thirteen Additional Scientific Abstracts Accepted for Presentation
UPPER NYACK, N.Y.–(BUSINESS WIRE)–#ACR22–Members of CreakyJoints, the digital, arthritis patient community of the Global Healthy Living Foundation, were selected to present eight testimonials at the American College of Rheumatology’s Patient Perspectives Program, held concurrently at the American College of Rheumatology Convergence 2022 (Philadelphia, PA, November 10-14, 2022). Collectively, the eight poster presentations highlight how people living with chronic, autoimmune illness take control of their disease management by finding community, identifying health care providers who act as partners, and adding complementary therapies or management strategies to their regimen to improve disease outcomes.
During the ACR Convergence, CreakyJoints also will present one oral presentation, one session panel, and twelve additional scientific posters.
Two Patient Perspectives posters describe challenges members overcame to access high quality rheumatology care despite limited resources in their local area. In “Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment,” CreakyJoints member and elementary school teacher Vanessa Kerr reports that she developed rheumatoid arthritis (RA) in between the birth of her fourth and fifth children. However, in her local area, the rheumatologist was only available one day a week, making appointments difficult to schedule, plus the rheumatologist did not discuss treatment alternatives when Kerr didn’t respond well to her initial medication regimen. With encouragement from a family member, Kerr sought a new rheumatologist, who lived an hour from her home but offered more support in between appointments and worked with her to find an alternative treatment approach.
“I live in a rural area where there are no rheumatologists and the local hospital has closed. After I was diagnosed with RA, I quickly learned the importance of advocating for myself,” said Ms. Kerr. “Going to the doctor means taking off work and traveling some distance, which is why I prepare in advance by writing a list of all my concerns and bringing someone with me to provide support.”
Similarly, in “Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis,” CreakyJoints member Ashley Krivohlavek, who lives with psoriatic arthritis (PsA), reports that in 2020 she had been on an infused biologic for 18 months, but the dose wore off too soon and her disease activity was worsening. She was switched to an injectable biologic, but even though she felt little relief, her provider was reluctant to change medications again. Calling her area a “rheumatology desert” with alternative practitioners available only out of state, Ms. Krivohlavek proactively coordinated telehealth consultations with other rheumatologists and eventually identified a practice new to her area that employed nurse practitioners with a rheumatology specialization. This practice encouraged Krivohlavek to communicate about her PsA goals and to be an equal partner in shaping her care experience.
“Finding health providers who emphasize a collaborative approach to care is a priority for me,” said Ms. Krivohlavek. “Since 2021, my symptoms, particularly the constant fatigue, brain fog, and swollen joints have improved, and my life has become my own again. I restarted graduate school and now volunteer in health advocacy in my state. Advocating for myself improved my quality of life.”
In her poster, Krivohlavek describes her Guide to Collaborating with Your Provider and Guide to Changing Providers, which are patient communication principles based on her experience.
Quality of Life Improved Via Social Media Strategies
In “From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease,” CreakyJoints member Cheryl Crow (@arthritislife, TikTok) and Zoe Rothblatt, Associate Director, Community Engagement at CreakyJoints, discuss how their personal and professional friendship evolved over social media as they shared information for coping with their respective chronic conditions. While their initial focus on social media was to share personal experiences and evidence-based education, they soon realized that their social media handles’ (@zoerothblatt, Twitter) comments section contained valuable tools and strategies, creating a loop of shared information they could incorporate into their own lives.
“Our social media handles provide 24/7 access to the chronic illness community and their lived experience,” said Ms. Rothblatt. “Having this connection with others, sharing our ideas and in turn hearing about others’ experiences has changed the way we approach our health. For me, it has helped normalize my symptoms, meaning I feel less alone in coping with my condition. I also have more confidence speaking up at doctors’ appointments and managing my condition with the support of my online community.”
“I feel less alone and more emotionally supported when I share my arthritis journey with my online community,” said Ms. Crow. “Many times, comments have led me to try new techniques or gadgets to make living with rheumatoid arthritis easier.”
CreakyJoints Posters Accepted into the Patient Perspectives Track:
- Living with Rheumatoid Arthritis in a Rural Farming Community: How I Found a Rheumatologist and Got Targeted Treatment (Poster PP19, Author Vanessa Kerr, Saturday, November 12, 2022, 1-3:00pm ET)
- Please Hear Me: How Effective Provider-Patient Communication Improved My Psoriatic Arthritis (Poster PP16, Author: Ashley Krivohlaek, Saturday, November 12, 2022, 1-3:00pm ET)
- From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease (Poster PP05, Authors Cheryl Crow and Zoe Rothblatt, Saturday, November 12, 2022, 1-3:00pm ET)
- What Lies Beneath: Making Rheumatoid Arthritis Visible for the Seronegative Patient through Precision Medicine (Poster PP21, Author Shilpa Venkatachalam, PhD, MPH, Saturday, November 12, 2022, 1-3:00pm ET)
- From Devastated to Empowered (author: Eileen Davidson: How Patient Engagement in Research Changes Lives (Poster PP18, Author Eileen Davidson, Saturday, November 12, 2022, 1-3:00pm ET)
- We Became Advocates, Educators, and a Support System for Hispanic / Latino Patients with Rheumatoid Arthritis and Their Caregivers Through Involvement in a Virtual Patient Advisory Board (Poster PP12, Authors: Zucy Almonacid, Wigna Cruz, Francisca Garcia, Teresa Hernandez, Velia Martinez, Patricia Mattos, Mario Mutis, and Denise Serrano, Saturday, November 12, 2022, 1-3:00pm ET)
- Exercise as a Supportive Treatment for my Ankylosing Spondylitis (Poster PP11, Author Sara King-Dowling, PhD, Saturday, November 12, 2022, 1-3:00pm ET)
- Engaging with Spoon Theory: How I Make Decisions Using a Cost-Benefit Analysis That Works to Improve My Mental Health While Living With RA (Poster PP17, Author Stephanie Aleite, Saturday, November 12, 2022, 1-3:00pm ET)
Scientific Posters by CreakyJoints at the ACR Convergence 2022:
- Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions (Oral Presentation, Abstract 2247, Monday, November 14, 2022, 4:30-6:00pm ET)
- Exploring Patient Journeys and Education Needs of Hispanic Individuals with Rheumatoid Arthritis (Poster 0184, Saturday, November 12, 2022, 1-3:00pm ET)
- Patient Perspective of Unique Support and Education Needs of Latinx/Latino(a)/Hispanic Rheumatoid Arthritis Patients: Implications for a Culturally Tailored and Disease Specific Intervention (Poster 0181, Saturday, November 12, 2022, 1-3:00pm ET)
- What Education Topics and Smartphone App Functions Do Rheumatology Patients Consider Important? Survey of Patients in a Community-Based Practice Network (Poster 1332, Sunday, November 13, 2022, 1-3:00pm ET)
- Patient Perceptions of Rheumatoid Arthritis Blood Work: A Cross-sectional Survey in the ArthritisPower Registry (Poster 1333, Sunday, November 13, 2022, 1-3:00pm ET)
- Managing Psoriatic Arthritis: Patients’ Views and Attitudes to Using an Online Wellness Program (Poster 0212, Saturday, November 12, 2022, 1-3:00pm ET)
- Early Real-World Effectiveness of Upadacitinib in Rheumatoid Arthritis Using Patient-Reported Outcomes Collected Via Mobile Application (Poster 1354, Sunday, November 13, 2022, 1-3:00pm ET)
- Acceptance of Virtual Reality for Managing Their Disease Among People with Rheumatologic Conditions with and without Prior Experience using Virtual Reality (Poster 0195, Saturday, November 12, 2022, 1-3:00pm ET)
- Fertility and the Use of Assisted Reproductive Technologies: Perceptions, Thoughts and Experiences of Men and Women with Rheumatic Disease (Poster 0948, November 13, 2022, 9-10:30am ET)
- Home-Based Telehealth in Rheumatology: A Systematic Review & Narrative Synthesis (Poster 0743, Sunday, November 13, 2022, 9-10:30am ET)
- COVID-19 Vaccine Uptake and Reasons for Hesitancy in a Large Rheumatology Practice Network (Poster 0083, Saturday, November 12, 2022, 1-3:00pm ET)
- Peer Coach Intervention to Improve Primary Cardiovascular Disease Screening for Patients with Rheumatoid Arthritis (Poster 0911, Sunday, November 13, 2022, 9-10:30am ET)
- Real-World Evidence from Social Media Provides Insights into Patient Mental Health Outcomes in the Management of Gout (Poster 0201, Saturday, November 12, 2022, 1-3:00pm ET)
CreakyJoints® is an international digital community for millions of arthritis patients and caregivers who seek education, support, advocacy, and patient-centered research. We represent patients in English, Spanish, and French through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,700 trained volunteer patient, caregiver, and provider health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational peer-reviewed research. In addition to online and downloadable educational resources, CreakyJoints publishes many arthritis and chronic disease podcast series, available on all major streaming platforms, that provide both patient and provider perspectives. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information, visit CreakyJoints.org.
Find us online:
CreakyJoints Español: CreakyJoints.org.es
CreakyJoints Australia: CreakyJoints.org.au
CreakyJoints Canada: CreakyJoints.ca
Global Healthy Living Foundation: ghlf.org
Facebook: facebook.com/CreakyJoints & facebook.com/GlobalHealthyLivingFoundation
Twitter: @GHLForg, @CreakyJoints, #CreakyChats
Instagram: @creaky_joints, @creakyjoints_aus, @creakyjoints_esp
Global Healthy Living Foundation podcast network: https://ghlf.org/patient-education/listen/
Email: [email protected]ghlf.org