Arthritis & Rheumatism, Volume 63,
November 2011 Abstract Supplement
Abstracts of the American College of
Rheumatology/Association of Rheumatology Health Professionals
Annual Scientific Meeting
Chicago, Illinois November 4-9, 2011.
Rheumatoid Arthritis: Patient Insights, Strategies and Expectations Dual Survey Offers Physicians Unique Insight Into Patient Experience.
Burmester1, Gerd R., Lupton2, Theresa, Alvaro-Gracia3, JM, Haraoui4, Boulos
CharitéUniversitätsmedizin Berlin, Berlin, Germany
Univ of Calgary Medical Clinics, Calgary, AB
Hospital Universitario de la Princesa, IIS Princesa,, Madrid, Spain
Institut de Rhumatologie, Montreal, QC
The 2009 Rheumatoid Arthritis: Patient Insights, Strategies + Expectations (RAISE) "Patient Needs Survey" identified gaps in patient-physician communications. The 2011 RAISE "Patient Experience Survey" allowed physicians to identify patients in their practice who could share their daily life with RA and user knowledge of TNF inhibitors (TNFi). Objectives: further define the best patient experience; identify + bridge gaps between actual patient experience and physician perceptions of patient experience; develop the foundation for an information-based program that opens a dialogue between patients and physicians about RA quality-of-life (QoL).
47 rheumatologists from Spain, Canada, and Germany identified patients who met entry criteria: >=18 years old + receiving a subcutaneous biologic for treatment of moderate-to-severe RA for >=2 months. Patients completed a 30-minute survey via computer-assisted telephone interview. Survey topics: impact of RA on work and social interaction, optimism about QoL, experience with injection site reactions (ISRs), training and education on use of subcutaneous TNFi. All physicians saw aggregate country-level patient data, and those with participation of >=5 patients also saw practice-level data. Physicians completed a survey that assessed their perceptions of patient needsboth before and after seeing patient data.
239 patients (78% female, mean age 52 yrs, mean 11 yrs since diagnosis) currently receiving etanercept (51%) or adalimumab (49%) completed the survey. 47 physicians reviewed country-level data (16/47 reviewed practice-level data) and completed a survey. Patient Data: 80% of patients felt their RA was moderately/very well controlled in the week pre-survey; 37% reported it significantly affected their daily activities. Two-thirds stated their physician was very aware of these difficulties, while 28% wished he/she asked about it more. Most patients (94%) experienced a degree of discomfort when injecting. The most common patient-reported ISRs were needlestick pain and burning, and 23% (55/239) have these sensations every time. 34% said the burning sensation is moderately or very bothersome and lasts 1.4 hours (mean). 13% have considered skipping injections because of ISRs. 60% reported discussing ISRs with their physician, with 36% of these conversations initiated by the physician. Physician Data: Before reviewing patient data, 64% of physicians said they initiated discussions about ISRs and believed that only 18% of their patients experience any ISR. Physicians believed needlestick pain was most common and burning was rarer (<10%) and probably not bothersome. Responding to patient data, 50% felt the incidence and bothersomeness of ISRs were somewhat worse than expected; 30% were motivated to change their approach to managing ISRs; and 75% were more likely to discuss ISRs with patients. 85% agreed that patient data provided new insights.
The RAISE Patient Experience Survey reveals gaps between patient reality and physician perceptions about TNFi treatment and living with RA. Education and dialogue will enable both physician and patient to benefit from improved management of RA.
To cite this abstract, please use the following information:
Burmester, Gerd R., Lupton, Theresa, Alvaro-Gracia, JM, Haraoui, Boulos; Rheumatoid Arthritis: Patient Insights, Strategies and Expectations Dual Survey Offers Physicians Unique Insight Into Patient Experience. [abstract]. Arthritis Rheum 2011;63 Suppl 10 :2075