[Disability and quality of life of patients with rheumatoid arthritis: assessment and perspectives].

Functional disability and quality of life in rheumatoid arthritis (RA) are key outcomes that determine patient's demand for care, and influence their compliance and satisfaction with treatment. In the recent years the demand to collect outcome data is ever increasing as a means for the validation of quality care, and the development of effective outcome measures has become a major thrust of health research and has contributed to better understanding the relationship between outcomes and specific elements of health care. There are several disease-generic and specific instruments available that have proven valuable in outcome testing in RA. The first instruments provide a broad picture of health status across a range of conditions, whereas the latter are more sensitive to the disorder under consideration and are therefore more likely to reflect clinically important changes. When necessary, this kind of scales can be supplemented with specialised domain-specific scales (for the assessment of psychological well-being, social role functioning, or other). As in other fields, these measurement instruments mainly focus on: a) clinical signs and symptoms (physiologic and biologic); b) physical and/or cognitive functioning; c) well-being and emotional functioning; d) social functioning; e) satisfaction with care and other personal constructs (life satisfaction, spirituality, etc.); f) health-related quality of life (HRQOL). Over the past 20 years, there has been a better recognition of the patient's point of view as an important component in the assessment of health care outcomes, and an increasing interest in HRQOL as an important area of research, due to the rising burden of chronic diseases, longer expectation of life, the growing number of health intervention alternatives, and greater emphasis on humanising health care. In addition, decision-making on issues of cost-effectiveness across health inputs and resource allocation across health programs is likely to be more sound if informed by HRQOL evidence. This paper reviews the literature and discusses the major issues regarding mainly measures of physical function (e.g., mobility or daily activities) and health status, including some so called HRQOL instruments

Assessment of circadian rhythm in pain and stiffness in rheumatic diseases according the EMA (Ecologic Momentary Assessment) method: patient compliance with an electronic diary

Background: Many researchers have used paper diaries in an attempt to capture patient experience. However, patient non-compliance with written diary protocols is a serious problem for researchers. Electronic patient experience diaries (eDiary) facilitate Ecologic Momentary Assessment (EMA) study designs by allowing the researcher to administer flexible, programmable assessments and mark each record with a time and date stamp. Objectives: The objectives of the current study were to evaluate methodological issues associated with real-time pain reports (EMA) using electronic patient experience diaries, to quantify compliance (percentage of the total number of diary reports scheduled that were actually completed), and to examine the circadian rhythm in pain and stiffness of patients with rheumatic diseases in an ecologically valid manner. Methods: In this cross-sectional study we examined 49 patients with rheumatic diseases (14 patients with rheumatoid arthritis, 18 with fibromyalgia and 17 with osteoarthritis of the knee), attending the care facilities of the Department of Rheumatology of Universita Politecnica delle Marche. All patients fulfilling the American College of Rheumatology (ACR) criteria. The assessment of pain and stiffness in all patients were repeated seven times a day (8 A.M., 10 A.M., 12 A.M., 2 P.M., 4 P.M., 6 P.M. and 8 P.M.) on seven consecutive days using an electronic diary (DataLoggerO - Pain Level Recorder). A datalogger is newly developed electronic instrument that records measurements of pain and stiffness over time. Dataloggers are small, battery-powered devices that are equipped with a microprocessor. Specific software is then used to select logging parameters (sampling intervals, start time, etc.) and view/analyse the collected data. Compliance is based on the time and date record that was automatically recorded by the devices. Results: Using the data from the electronic diary, we determined that the average verified compliance rate for pain and stiffness were 93.8 and 93.6%, respectively. The two highest compliance rates were observed in patients with rheumatoid arthritis (95.6 and 95.2%, respectively). There were no statistically significant difference in compliance between females and males or patients above or below 60 years old. Significant circadian rhytms in patients with RA and OA of the knee were detected in pain and stiffness. No rhythm in pain or stiffness was observed in subjects with fibromyalgia. Conclusions: We conclude that collection of subjective data using electronic diary in rheumatologic setting is a feasible method than can be adopted with high compliance rates across a range of patient demographic subgroups. The identification of diurnal cycles of self-reported pain and stiffness, using EMA method, has important implications for patients with respect to planning their daily activities and in developing individual therapeutic programs with respect to diurnal variability, which therefore may be more effective

Technology Directions for the 21st Century

New technologies will unleash the huge capacity of fiber-optic cable to meet growing demands for bandwidth. Companies will continue to replace private networks with public network bandwidth-on-demand. Although asynchronous transfer mode (ATM) is the transmission technology favored by many, its penetration will be slower than anticipated. Hybrid networks - e.g., a mix of ATM, frame relay, and fast Ethernet - may predominate, both as interim and long-term solutions, based on factors such as availability, interoperability, and cost. Telecommunications equipment and services prices will decrease further due to increased supply and more competition. Explosive Internet growth will continue, requiring additional backbone transmission capacity and enhanced protocols, but it is not clear who will fund the upgrade. Within ten years, space-based constellations of satellites in Low Earth orbit (LEO) will serve mobile users employing small, low-power terminals. 'Little LEO's' will provide packet transmission services and geo-position determination. 'Big LEO's' will function as global cellular telephone networks, with some planning to offer video and interactive multimedia services. Geosynchronous satellites also are proposed for mobile voice grade links and high-bandwidth services. NASA may benefit from resulting cost reductions in components, space hardware, launch services, and telecommunications services

The impact of vertebral fractures on quality of life in postmenopausal women with osteoporosis. Validity of the Italian version of mini-Osteoporosis Quality of Life Questionnaire

Background: Vertebral fracture is one of the most commonly occurring osteoporotic fractures. Vertebral fractures associated with osteoporosis are a major cause of pain in elderly people and may hardly affect patient's health-related quality of life (HRQOL), making this an important parameter for assessment in these patients. Studies comparing the performance of HRQOL instruments in osteoporosis are laking. Objectives: The purposes of this study were to assess the effect of vertebral fractures on health HRQOL in postmenopausal women with osteoporosis and to investigate the validity of the Italian version of the mini-Osteoporosis Quality of Life Questionnaire (mini-OQOL) in a clinical setting. Methods: Patients were divided into two study groups, according to fracture status: vertebral fractures (41 patients) and no vertebral fractures (27 patients). Baseline assessments of anthropometric data, medical history, and prevalent fracture status were obtained from all participants. All of the participants were evaluated using both disease-targered mini-OQOL and QUALEFFO, generic instrument (EUROQoL), disability scale (Roland Morris Disability questionnaire- RMDQ) and chronic pain grade questionnaire. Results: Vertebral fractures due to osteoporosis significantly decreases scores on physical function, socio-emotional status, clinical symptoms, and overal HRQOL. Both disease-targeted questionnaires showing an association between the number of prevalent vertebral fractures and decreased HRQOL. Significant correlations existed between scores of similar domains of mini-OQOL and the QUALEFFO, especially for symptoms, physical function, activities of daily living and social function. The receiver operating characteristic (ROC) curve analysis of mini-OQOL and the QUALEFFO indicated that both questionnaires were significantly predictive of vertebral fractures. Number of concomitant diseases presented a weak significant correlation with EUROQoL (p=0,041). Conclusions: Our study suggests that the patients with vertebral fractures due to osteoporosis have a relevant impairment in quality of life. Both disease-targeted questionnaires discriminated between patients with and without vertebral fractures though the mini-OQOL, originally developed to measure the effect of vertebral fractures on quality of life, showed slightly better discriminant power. The benefit of the mini-OQOL is that it is efficient, self administered, and requires 3-4 minutes to complete

Validation of the Italian versions of the Bath Ankylosing Spondylitis Functional Index (BASFI) and the Dougados Functional Index (DFI) in patients with ankylosing spondylitis

Objectives: The Bath Ankylosing Spondylitis Functional Index (BASFI) and the Dougados Functional Index (DFI) are the most commonly used instruments to measure functioning in ankylosing spondylitis (AS). The aim of this study was to translate, adapt and validate these instruments into the Italian language. Methods: The BASFI and DFI questionnaires were translated into Italian by two independent bilingual physicians who were familiar with the medical aspects of AS and by one professional translator. Two rheumatologists familiar with instrument validation, and who were aware of the purpose of the study, examined semantic, idiomatic and conceptual issues and produced by consensus unified versions of each instrument. English back-translations from the Italian were done by a professional translator unaware of the original version. Both English versions were compared, and where needed, modifications to the Italian versions were made. Results: A total of 95 patients were included: 77 males, age (mean±SD) 47.9±9.3years, and disease duration 12.4±6.6 years, and 18 females, age 45.9±8.7 years, and disease duration 11.3±8.2 years. Reliability, measured in 23 patients participating a physiotherapy program, showed an acceptable one-week test-retest intraclass correlation coefficient (ICC) - BASFI ICC: 0.91, 95% CI: 0,87-0.94 and DFI ICC: 0.86, 95% CI: 0.83-0.90. The internal consistency was 0.90 (Cronbach's alpha) for the BASFI and 0.87 for the DFI. For validity the functional indices were correlated with the Bath Ankylosing Spondylitis Disease Activity Index (BASDAI), Bath Ankylosing Spondylitis Metrology Index (BASMI), Bath Ankylosing Spondylitis Patient Global Score (BAS-G), modified Health Assesment Questionnaire (HAQ-S), SF-36 physical component summary (SF-36 PCS), stiffness, pain, physician's assessment of disease activity, Bath AS Radiology Index-total (BASRI-t), erythrocyte sedimentation rate (ESR), and C-reactive protein (CRP). The functional indices (BASFI and DFI) were correlated with each other (p<0.0001) and with activity variables. There was no significant relationship between functional indices and BASRI-t and acute phase reactants. The receiver operating characteristic (ROC) curve analysis indicated that the BASFI ranked superior compared to HAQ-S, (p = 0.019) and SF36 PCS (p = 0.002), but not respect to DFI (p = NS), in distinguishing between patients with high and low disease activity. Conclusions: The Italian versions of the BASFI and DFI showed adequate reliability and validity in patients with AS. Because of psychometric advantages, the BASFI may be preferred in clinical trial settings. However, sensitivity to changes due to drug therapy and/or rehabilitation remains to be determined

Disability and quality of life of patients with rheumatoid arthritis: assessment and perspectives

This paper reviews the literature and discusses the major issues regarding mainly measures of physical function (e.g., mobility or daily activities) and health status, including some so called HRQOL instruments