Advanced search
Publication Cover
Patient Related Outcome Measures Volume 14, 2023 - Issue
Submit an article Journal homepage
242
Views
0
CrossRef citations to date
0
Altmetric
ORIGINAL RESEARCH

Assessment of Real-World Patient-Reported Outcomes in Patients Initiating Biologic Agents for the Treatment of Autoimmune Diseases: An Observational Study in Four Patient-Powered Research Networks

Timothy Beukelman1 Department of Pediatrics, Division of Rheumatology, University of Alabama at Birmingham, Birmingham, AL, USACorrespondence[email protected]
,
Millie D Long2 Department of Medicine, Division of Gastroenterology and Hepatology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USAORCID Iconhttps://orcid.org/0000-0001-5983-2758
ORCID Icon,
Rennie L Rhee3 Department of Medicine, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, USA
,
Michael D Kappelman4 Department of Pediatrics, Division of Pediatric Gastroenterology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
,
Peter A Merkel3 Department of Medicine, Division of Rheumatology, University of Pennsylvania, Philadelphia, PA, USA;5 Department of Biostatistics, Epidemiology, and Informatics; Division of Epidemiology, University of Pennsylvania, Philadelphia, PA, USA
,
William Benjamin Nowell6 Global Healthy Living Foundation, Upper Nyack, NY, USA
,
Cassie Clinton7 Department of Medicine, Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, AL, USAORCID Iconhttps://orcid.org/0000-0002-8907-8976
ORCID Icon,
Sarah Ringold8 Department of Pediatrics, Division of Rheumatology, Seattle Children’s Hospital, Seattle, WA, USA
,
Vincent Del Gaizo9 Childhood Arthritis and Rheumatology Research Alliance (CARRA) and PARTNERS PPRN, Milwaukee, WI, USA
,
Brian Price10 Crohn’s and Colitis Foundation and IBD-Partners, New York, NY, USA
,
Dianne G Shaw11 Vasculitis Patient Powered Research Network, Kansas City, MO, USA
,
Shilpa Venkatachalam6 Global Healthy Living Foundation, Upper Nyack, NY, USA
,
David Cuthbertson12 Health Informatics Institute, University of South Florida, Tampa, FL, USA
,
Fenglong Xie7 Department of Medicine, Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, AL, USA
,
Xian Zhang4 Department of Pediatrics, Division of Pediatric Gastroenterology, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
&
Jeffrey R Curtis7 Department of Medicine, Division of Clinical Immunology and Rheumatology, University of Alabama at Birmingham, Birmingham, AL, USA
 show all
Pages 171-180 | Received 13 Dec 2022, Accepted 23 Mar 2023, Published online: 13 Jun 2023

References

  • Consortium PCP, Daugherty SE, Wahba S, Fleurence R. Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research. J Am Med Inform Assoc. 2014;21(4):583–586. doi:10.1136/amiajnl-2014-002758
  • Nowell WB, Merkel PA, McBurney RN, et al. Patient-powered research networks of the autoimmune research collaborative: rationale, capacity, and future directions. Patient. 2021;14:699–710. doi:10.1007/s40271-021-00515-1
  • Nowell WB, Curtis JR, Crow-Hercher R. Patient governance in a patient-powered research network for adult rheumatologic conditions. Med Care. 2018;56:S16–S21. doi:10.1097/MLR.0000000000000814
  • Nowell WB, Curtis D, Thai M, et al. Digital Interventions to build a patient registry for rheumatology research. Rheum Dis Clin North Am. 2019;45(2):173–186. doi:10.1016/j.rdc.2019.01.009
  • Beukelman T, Kimura Y, Ilowite NT, et al. The new Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry: design, rationale, and characteristics of patients enrolled in the first 12 months. Pediatr Rheumatol Online J. 2017;15(1):30. doi:10.1186/s12969-017-0160-6
  • Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care. 2003;41(5):582–592. doi:10.1097/01.MLR.0000062554.74615.4C
  • Katz P, Kannowski CL, Sun L, Michaud K. Estimation of minimally important differences and patient acceptable symptom state scores for the patient-reported outcomes measurement information system pain interference short form in rheumatoid arthritis. ACR Open Rheumatol. 2020;2(6):320–329. doi:10.1002/acr2.11141
  • Katz P, Pedro S, Alemao E, et al. Estimates of responsiveness, minimally important differences, and patient acceptable symptom state in five patient-reported outcomes measurement information system short forms in systemic lupus erythematosus. ACR Open Rheumatol. 2020;2(1):53–60. doi:10.1002/acr2.11100
  • Yost KJ, Eton DT, Garcia SF, Cella D. Minimally important differences were estimated for six patient-reported outcomes measurement information system-cancer scales in advanced-stage cancer patients. J Clin Epidemiol. 2011;64(5):507–516. doi:10.1016/j.jclinepi.2010.11.018
  • Nowell WB, Curtis JR, Nolot SK, et al. Digital Tracking of Rheumatoid Arthritis Longitudinally (DIGITAL) using biosensor and patient-reported outcome data: protocol for a real-world study. JMIR Res Protoc. 2019;8(9):e14665. doi:10.2196/14665

Related research

People also read lists articles that other readers of this article have read.

Recommended articles lists articles that we recommend and is powered by our AI driven recommendation engine.

Cited by lists all citing articles based on Crossref citations.
Articles with the Crossref icon will open in a new tab.