“PAINSOMNIA” Described by CreakyJoints Patient Advocates at the 2018 American College of Rheumatology Annual Meeting
As part of the first ever “Patient Perspectives Poster Program” at the 2018 ACR/ARHP Annual Meeting in Chicago, volunteer patient advocates sponsored by CreakyJoints® presented a poster discussing patients’ adaptations to better manage “Painsomnia,” or pain-related insomnia. The poster titled, “Using a Mobile App to Facilitate Patient-Doctor Discussions to Make Informed Decisions Regarding 'Painsomnia'” (abstract number PP01), was presented on Sunday, October 21.
This year American College of Rheumatology (ACR) and Association of Rheumatology Health Professionals (ARHP) invited individuals affected by rheumatic disease to submit poster presentations specifically answering the question, “What adaptations did you and/or your healthcare team adopt to better care for your health?” Examples of adaptations ranged from exercise, diet or lifestyle, the impact of support groups, and better patient/physician discussions.
Painsomnia Management via ArthritisPower® Mobile App
For CreakyJoints patient advocate and study co-author Shelley Fritz, her rheumatoid arthritis (RA) joint pain caused painsomnia—a popular patient-generated term stemming from online community (#SpoonieChat) discussions. Ms. Fritz’s present treatment plan includes an injection medication for RA, significant lifestyle changes, monthly physician exams, and related bloodwork. After learning about the ArthritisPower Research Registry— a free patient-centered mobile and desktop app designed by CreakyJoints and the University of Alabama at Birmingham to track symptoms and disease progression over time—Ms. Fritz began to use it to better understand changes in her physical function and sleep quality.
“Over a six-month period, ArthritisPower helped me to track how my pain was connected to my fatigue, sleep quality, and even cognitive issues. Over time, I could see that days when I slept worse or felt more tired were linked to days I had more pain. “Painsomnia” also hit during times that I reported more flare ups and illness, or used steroid medication,” said Ms. Fritz, a Florida-based teacher who is a CreakyJoints member and current ArthritisPower Patient Governor. “That data, along with notes I kept in the app, allowed me to better communicate my patterns and experiences to my doctor, which helped us look beyond lab tests and swollen joint counts to help me better manage my condition and live with more quality.”
ArthritisPower consists mainly of rheumatoid arthritis (RA) and psoriatic/spondyloarthritis patients (n>17,000, 2018) and is supported by the Patient-Centered Outcomes Research Institute (PCORI) and more than a dozen externally-funded studies. ArthritisPower users can elect to participate in research studies and/or use the app to track and share their disease progression and management by selecting aspect(s) of their health to track longitudinally from a library of more than 80 electronic patient-reported outcome measures including computer adaptive testing (CAT) PROMIS3 and rheumatology-specific instruments (e.g., RAPID3, BASDAI, flare). Additionally, patients can log symptoms, record and set medication reminders, import lab test results, and share that data with their providers. ArthritisPower data are stored within the HIPAA-compliant Amazon Web Services’ cloud.
“Shelley’s ArthritisPower activity has put a vast amount of health information into her hands, allowing her to better work with her rheumatologist and communicate her experience to others living with chronic forms of arthritis,” said Seth Ginsberg, president and co-founder of CreakyJoints and co-principle investigator of ArthritisPower. “We are grateful to the ACR/ARHP team for recognizing the value that individual patient insights – like those from Shelley and her co-authors – can bring to the professional rheumatology community via their patient perspective poster program. For the second year, CreakyJoints members are serving as “special reporters” at the annual ACR/ARHP meeting and we look forward to communicating about this and other patient-centered data being presented in Chicago.”
The co-authors for this study include Shelley Fritz as well as CreakyJoints members Kristine Carandang and Dawn Gibson, who is also the founder of #SpoonieChat. During the poster program, they will join 12 patients in presenting their unique interventions that provides them with better disease management.
“The goal of the American College of Rheumatology's Annual Meeting is to share research and innovations that provide the best care for our patients,” said Dr. Amanda Myers, ACR Committee on Education member. “We understand that if our mission is to have real impact on our patients' experience of disease and quality of life, we must include them in the conversation. We’re thrilled with the response our Patient Perspectives Poster Program generated among patients and associated organizations, and look forward to spotlighting and sharing their insights with our members through this unique poster program.”
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.
CreakyJoints is a digital community and advocacy organization for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients through our popular social media channels, our website www.CreakyJoints.org, and the 50-State Network, which includes more than 1,200 trained volunteer patient advocates.
As part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower with more than 17,000 consented arthritis patients who participate in longitudinal and observational research. CreakyJoints also publishes the popular series “Raising the Voice of Patients,” which are downloadable patient-centered navigational tools for managing chronic illness. For more information and to become a member (for free), visit www.CreakyJoints.org.
About the ACR/ARHP Annual Meeting
The ACR/ARHP Annual Meeting is the premier meeting in rheumatology. With more than 450 sessions and thousands of abstracts, if offers a superior combination of basic science, clinical science, tech-med courses, career enhancement education and interactive discussions on improving patient care. For more information about the meeting, visit https://www.rheumatology.org/Annual-Meeting, or join the conversation on Twitter by following the official #ACR18 hashtag.
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