Ben Nowell, PhD, a co-investigator of Arthritis Power, says it’s designed to allow patients to track their personal health while also making it easy for them to participate in research projects. Dr. Nowell is also director of patient-centered research at CreakyJoints, an online nonprofit, patient-supported community.11
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Explore This IssueDecember 2015
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“When it comes time for a patient’s next appointment, he or she can e-mail their doctor this information directly from the application in advance,” says Dr. Nowell, an advisory board member for some of the projects led by Drs. Bingham and Bartlett. “Therefore, the conversation the patient and doctor have in the office may be driven by data and not reliant on a patient’s memory or a doctor eliciting for symptoms.”
“This interaction is a cornerstone of patient-centered care, [because] patients are speaking about their illness in their own terms and are prioritizing their biggest concerns,” he says.
Mary Beth Nierengarten is a writer, editor and journalist from Minneapolis with more than 20 years of experience writing about clinical medicine and health-related issues.
Developed by the National Institutes of Health, PROMIS provides a standardized approach for assessing patients’ physical and mental health status and social well-being. PROMIS instruments measure patient-reported symptoms of physical function, depression, anxiety, social function, pain and fatigue. The instruments are available at no cost as paper-based short forms (four to 10 items) or by using item banks with computerized adaptive testing where three to seven items can offer more precise results. Several EHR systems now offer access to PROMIS measures through patient portals.
Patient-Reported Outcome Tools
A toolbox of patient-reported outcomes (PROs) for use is available on the European League Against Rheumatism (EULAR) website. The goal of the toolbox is to provide a comprehensive database of validated patient-reported instruments, such as questionnaires, indices and scales, which emphasize PROs used in rheumatology. Interested users can search for an outcome measure by language, by disease or by name.
Online Patient Resources
- El Miedany Y. Adopting patient-centered care in standard practice: PROMs moving toward disease-specific era. Clin Exp Rheumatol. 2014 Sep–Oct;32(5 Suppl 85):S40–S46.
- El Miedany Y. PROMs in inflammatory arthritis: Moving from static to dynamic. Clin Rheumatol. 2013 Jun;32(6):735–742.
- El Miedany Y, El Gaafary M, Palmer D. Assessment of the utility of visual feedback in the treatment of early rheumatoid arthritis patients: A pilot study. Rheumatol Int. 2012 Oct;32(10):3061–3068.
- Smolen JS, Landewé R, Breedveld FC, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update. Ann Rheum Dis. 2014 Mar;73(3):492–509.
- Bartlett SJ, Hewlett S, Bingham CO 3rd, et al. Identifying core domains to assess flare in rheumatoid arthritis: An OMERACT international patient and provider combined Delphi consensus. Ann Rheum Dis. 2012 Nov;71(11):1856–1860.
- Hewlett S, Sanderson T, May J, et al. ‘I’m hurting, I want to kill myself’: Rheumatoid arthritis flare is more than a high joint count—An international patient perspective on flare where medical help is sought. Rheumatology (Oxford). 2012 Jan;51(1):69–76.
- Bartlett SJ, Bykerk VP, Cooksey R, et al. Feasibility and domain validation of rheumatoid arthritis (RA) flare core domain set: Report of the OMERACT 2014 RA Flare Group Plenary. J Rheumatol. 2015 Nov;42(11):2185–2189.
- Bykerk VP, Lie E, Bartlett SJ, et al. Establishing a core domain set to measure rheumatoid arthritis flares: Report of the OMERACT 11 RA Flare Workshop. J Rheumatol. 2014 Apr;41(4):799–809.
- Bartlett SJ, Orbai AM, Duncan T, et al. Reliability and validity of selected PROMIS measures in people with rheumatoid arthritis. PLoS One. 2015 Sep 17;10(9):e0138543.
- Arthritis Power.