The online version of this article (doi:10.1186/s12891-015-0567-5) contains supplementary material, which is available to authorized users.
The authors declare that they have no competing interests.
RP and BFL were involved in study design, conception, data analysis, interpretation, and manuscript generation. JF was involved in data analysis, interpretation, and manuscript generation. HPB, MH, MM, TN, SEP, and ASB were involved in data collection, data analysis, interpretation and manuscript generation. All authors read and approved the final manuscript.
A survey was conducted to evaluate whether a steady improvement in the quality of life of Rheumatoid Arthritis (RA) patients as frequently reported in clinical studies, does actually occur. The focus of this study laid on the personal perception of RA patients. How do patients who have been treated along accepted guidelines see the state of their health and their joint pain at different points in time?
RA patients were asked to complete a questionnaire and return it to an opinion research centre. The questionnaire, which was developed by the authors, was divided into the areas: demography, symptom description and medical care, as well as the illness in a personal context. Three telephone interviews followed in monthly intervals when the patients´ feelings about their illness, their every-day coping mechanisms and their social lives were rated. Intra-subject correlation and the level of agreement among patients when assessed at three different points within a two month period, was determined.
127 patients replied to the questionnaire. RA exerts a significant impact on a patient’s daily life. Average ratings of current state of health and joint pain (answered on a 5-part scale extending from 1 (very good) to 5 (very bad)) range between 2.6 and 2.9 all three times. However, intra-subject correlation between the different assessment times, is in general quite modest. Concerning the question: “How is your join pain today?” only 14 of 127 participants express identical ratings all three times , while in one third of the participants, a difference of two digits on the 5-part scale, at least twice had to be noticed. Intra-class correlation coefficients between answers at different points are often much smaller than 0.5. Results were similar in all subgroups analysed (men vs. women; patients receiving biologics vs. those not receiving biologics; disease duration ≤3 years vs. 4 to 10 years vs. ≥11 years).
On an individual level personal assessments of health, well-being and joint pain are nevertheless unsteady even within the timeframe of two months. This is why, even now, RA patients still cannot plan their lives as non-affected people can.
Nell VP, Machold KP, Eberl G, Stamm TA, Uffman M, Smolen JS. Benefit of very early referral and very early therapy with disease-modifying, anti-rheumatic drugs in patients with early rheumatoid arthritis. Rheumatology (Oxford). 2004;43:906–14. CrossRef
Rintelen B, Sautner J, Haindl P, Mai H, Brezinschek HP, Leeb BF. Remission in rheumatoid arthritis: a comparison of the 2 newly proposed ACR/EULAR remission criteria with the rheumatoid arthritis disease activity index-5, a patient self-report disease activity index. J Rheumatol. 2013;40(4):394–400. CrossRefPubMed
Singh H, Gupta V, Ray S, Kumar H, Talapatra P, Kaur M, et al. Evaluation of disease activity in rheumatoid arthritis by Routine Assessment of Patient Index Data 3 (RAPID3) and its correlation to Disease Activity Score 28 (DAS28) and Clinical Disease Activity Index (CDAI): an Indian experience. Clin Rheumatol. 2012;31(12):1663–9. CrossRefPubMed
Maska L, Anderson J, Michaud K. Measures of functional status and quality of life in rheumatoid arthritis: Health Assessment Questionnaire Disability Index (HAQ), Modified Health Assessment Questionnaire (MHAQ), Multidimensional Health Assessment Questionnaire (MDHAQ), Health Assessment Questionnaire II (HAQ-II), Improved Health Assessment Questionnaire (Improved HAQ), and Rheumatoid Arthritis Quality of Life (RAQoL). Arthritis Care Res (Hoboken). 2011;63 Suppl 11:S4–13. CrossRef
Grominca-Ihle E, Rink M. Treat-to-target from the patient perspective. Z Rheumatol. 2011;70:678–84. CrossRef
Sanderson T, Morris M, Calnan M, Richards P, Hewlett S. Patient perspective of measuring Treatment efficacy: The rheumatoid Arthritis Patient Priorities for Pharmacologic Interventions Outcomes. Arthritis Care Res. 2010;62(5):647–56. CrossRef
Food and Drug Administration. Guidance for Industry. Patient-Reported Outcome Measures 2009: Use in Medical Product Development to Support Labeling Claims. [ http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf]
Ahlmén M, Nordenskiöld U, Archenholtz B, Thyberg I, Rönnquist R, Linden L, et al. Rheumatology outcomes: the patient’s perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients. Rheumatology (Oxford). 2005;44:105–10. CrossRef
Carr A, Hewlett S, Hughes R, Mitchel H, Ryan S, Carr M, et al. Rheumatology outcomes: the patient’s perspective. J Rheumatol. 2003;30:880–3. PubMed
Hazes JM, Taylor P, Strand V, Purcaru O, Coleur G, Mease P. Physical function improvements and relief from fatigue and pain are associated with increased productivity at work and at home in rheumatoid arthritis patients treated with certolizumab pegol. Rheumatology (Oxford). 2010;49:1900–10. CrossRef
Leeb BF, Haindl PM, Maktari A, Nothnagl T, Rintelen B. Patient-centered rheumatoid arthritis disease activity assessment by a modified RADAI. J Rheumatol. 2008;35(7):1294–9. PubMed
Tijhuis GJ, de Jong Z, Zwinderman AH, Zuijderduin WM, Jansen LM, Hazes JM, et al. The validity of the Rheumatoid Arthritis Quality of Life (RAQoL) questionnaire. Rheumatology (Oxford). 2001;40:1112–9. CrossRef
Van der Heijde DM, Van't Hof M, Van Riel PL, Van de Putte LB. Development of a disease activity score based on judgement in clinical practise by rheumatologists. J Rheumatol. 1993;20:579–81. PubMed
Aletaha D, Smolen J. The Simplified Disease Activity Index (SDAI) and the Clinical Disease Activity Index (CDAI): a review of their usefulness and validity in rheumatoid arthritis. Clin Exp Rheumatol. 2005;23:100–8.
- Is the state of health of rheumatoid arthritis patients receiving adequate treatment, predictable? - Results of a survey
Hans Peter Brezinschek
Stephan E Puchner
Burkhard F Leeb
- BioMed Central
Neu im Fachgebiet Orthopädie und Unfallchirurgie
Mail Icon II