Fibromyalgia: Boonen A

Ortiz Z, Shea B, Garcia Dieguez M, Boers M, Tugwell P, Boonen A, Wells G. · Academia Nacional de Medicina de Buenos Aires, Argentina. · J Rheumatol. · Pubmed #9918266 No free full text.

Abstract: To review the available evidence that has used generic instruments alone or in comparison with disease specific instruments. A systematic review was carried out using the methods recommended by the Cochrane Collaboration. We used MEDLINE and EMBASE searches and we performed a hand search of the abstracts listed under "quality of life" at American College of Rheumatology (ACR) meetings. Selection was limited to randomized controlled trials (RCT) using generic instruments in populations older than 18 years with any of the following diseases: rheumatoid arthritis, fibromyalgia, osteoporosis, osteoarthritis, systemic lupus erythematosus, and ankylosing spondylitis. Language was restricted to English papers. Studies using only disease-specific instruments were excluded. From 488 articles retrieved, 13 reports of 10 randomized controlled trials were selected. There were 101 abstracts on quality of life in ACR abstract books; 78 abstracts contained data on generic instruments, and of these, 9 described their use in RCT. Despite a substantial increase in the number of papers and abstracts addressing different aspects of generic questionnaires, the majority of the papers were descriptive. The evidence is not yet available to document that any of the generic instruments pass the requirements of the OMERACT Filter.

Boonen A, van den Heuvel R, van Tubergen A, Goossens M, Severens JL, van der Heijde D, van der Linden S. · Department of Internal Medicine, Division of Rheumatology, University Hospital Maastricht, PO Box 5800, 6202 AZ Maastricht, Netherlands. · Ann Rheum Dis. · Pubmed #15271773 links to  free full text

Abstract: OBJECTIVE: To compare the cost of illness of three musculoskeletal conditions in relation to general wellbeing. METHODS: Patients with fibromyalgia, chronic low back pain (CLBP), and ankylosing spondylitis who were referred to a specialist and participated in three randomised trials completed a cost diary for the duration of the study, comprising direct medical and non-medical resource utilisation and inability to perform paid and unpaid work. Patients rated perceived wellbeing (0-100) at baseline. Univariate differences in costs between the groups were estimated by bootstrapping. Regression analyses assessed which variables, in addition to the condition, contributed to costs and wellbeing. RESULTS: 70 patients with fibromyalgia, 110 with chronic low back pain, and 111 with ankylosing spondylitis provided data for the cost analyses. Average annual disease related total societal costs per patient were 7813 euro for fibromyalgia, 8533 euro for CLBP, and 3205 euro for ankylosing spondylitis. Total costs were higher for fibromyalgia and CLBP than for ankylosing spondylitis, mainly because of cost of formal and informal care, aids and adaptations, and work days lost. Wellbeing was lower in fibromyalgia (mean, 48) and low back pain (mean, 42) than in ankylosing spondylitis (mean, 67). No variables other than diagnostic group contributed to differences in costs or wellbeing. CONCLUSIONS: In patients under the care of a specialist, there were marked differences in costs and wellbeing between those with fibromyalgia or CLBP and those with ankylosing spondylitis. In particular, direct non-medical costs and productivity costs were higher in fibromyalgia and CLBP.

Prodinger B, Cieza A, Williams DA, Mease P, Boonen A, Kerschan-Schindl K, Fialka-Moser V, Smolen J, Stucki G, Machold K, Stamm T. · Vienna University, Department of Internal Medicine III, Division of Rheumatology, Vienna, Austria. · Arthritis Rheum. · Pubmed #18438895 links to  free full text

Abstract: OBJECTIVE: To analyze the content of outcome measures commonly used to assess health in patients with fibromyalgia (FM) by linking the items of the instruments with the International Classification of Functioning, Disability and Health (ICF) in order to evaluate the adequacy of currently used measures. METHODS: Questionnaires used in FM were identified in a structured literature search. All concepts included in the items of the questionnaires were linked to ICF categories, according to previously published linking rules, by 2 independent health professionals. The percentages of linked ICF categories addressing the different ICF components were calculated. RESULTS: Generic and symptom-specific instruments were included. From the 296 items contained in all 16 instruments, 447 concepts were extracted and then linked to 52 ICF categories of the component body functions, 1 category of the component body structure, 40 categories of the component activities and participation, and 9 categories of the component environmental factors. More than half of the concepts identified were linked to body function, fewer were linked to activities and participation, and only concepts of 4 instruments were linked to the ICF component environmental factors. CONCLUSION: Many concepts were linked to the categories in the ICF component body functions. While linking to the broad category, purportedly similar instruments often covered widely varying areas of function at more fine-grained levels of detail. Some categories, such as environmental factors, were barely covered by any of the instruments and might constitute an important aspect of health deserving better coverage and future development.

Mease P, Arnold LM, Bennett R, Boonen A, Buskila D, Carville S, Chappell A, Choy E, Clauw D, Dadabhoy D, Gendreau M, Goldenberg D, Littlejohn G, Martin S, Perera P, Russell IJ, Simon L, Spaeth M, Williams D, Crofford L. · Seattle Rhumatology Associates, Seattle, WA 98104, USA. · J Rheumatol. · Pubmed #17552068 No free full text.

Abstract: The fibromyalgia syndrome (FM) workshop at OMERACT 8 continued the work initiated in the first FM workshop at OMERACT 7 in 2004. The principal objectives were to work toward consensus on core domains for assessment in FM studies, evaluate the performance quality of outcome measures used in a review of recent trials in FM, and discuss the research agenda of the FM working group. An initiative to include the patient perspective on identification and prioritization of domains, consisting of focus groups and a patient Delphi exercise, was completed prior to OMERACT 8. Patient-identified domains were, for the most part, similar to those identified by clinician-investigators in terms of symptoms and relative importance. However, patients identified certain domains, such as stiffness, that were not included by physicians, and emphasized the importance of domains such as dyscognition and impaired motivation. Many of the principal domains agreed upon by the clinician-investigators, patients, and OMERACT participants, including pain, fatigue, sleep, mood, and global measures, have been used in clinical trials and performed well when viewed through the OMERACT filter. The research agenda items reviewed and approved for continued study included development of objective "biomarkers" in FM, development of a responder index for FM, and coordination with the WHO's International Classification of Functioning Disability and Health (ICF) Research Branch and the US National Institutes of Health's Patient Reported Outcome Measures Information System network (PROMIS) to develop improved measures of function, quality of life, and participation. The OMERACT process has provided a framework for identification of key domains to be assessed and a path toward validation and standardization of outcome measures for clinical trials in FM.