AUTOMATED COLLECTION OF QUALITY-OF-LIFE DATA: TOUCH-SCREEN COMPUTER SYSTEMS IN PATIENTS WITH IMMUNE DISEASES

摘要

AUTOMATED COLLECTION OF QUALITY-OF-LIFE DATA: TOUCH-SCREEN COMPUTER SYSTEMS IN PATIENTS WITH IMMUNE DISEASESClaúdia Ribeiro1,2,3, Augusta Silveira4,3, Isabel Silva4, Catarina Ribeiro4, Carlos Vasconcelos2,31UCP, 2HSA/CHP, 3ICBAS/UP, 4UFP e 5HSMF.Universidade Católica Portuguesa (UCP), Porto.Hospital de Santo António, Centro Hospitalar do Porto (HSA/CHP), Porto.Instituto Ciências Biomédicas Abel Salazar, Universidade do Porto (ICBAS/UP), Porto.Universidade Fernando Pessoa (UFP), Porto.Hospital Santa Maria da Feira (HSMF), Porto.BackgroundThe increase of technological knowledge and methodology has allowed the practice of redirecting epidemiological research, particularly in the field of chronic disease. Although capable of controlling the accumulation of events and constraints imposed by the treatment can lead to a drastic change in quality of life (QoL) of subjects progressed to varying degrees of disability and death. In this perspective the Quality of Life Related to Health (HRQOL) has taken a leading role and its evaluation is indispensable in Medicine. AimThe aims of this study were (1) analyze the importance of HRQOL assessment as a tool for health promotion and a way of measuring the effectiveness of interventions in daily practice in patients with coexisting chronic immune system (PCSI), (2) evaluation of alternative methods for the automated collection of data on HRQOL and development of an electronic interface in sample of 320 patients, (3) creating a database to ascertain the epidemiological profile of PCSI, and identification of socio-economic, demographic and clinical data of these individuals, (4) using the QoL indicator as a predictor in decision treatment and use the preferences of patients. MethodsA total of 473 patients with chronic diseases of the immune system, which were applied Graffar Index, SF-36v2, a demographic questionnaire and identification of clinical variables. ResultsThe results of this investigation suggest that the demographic, socio-economic and clinics are associated with significant differences in QoL cumulative and chronic complications associated with different pathologies. The results verified the existence of significant correlations between the different diagnoses, duration of disease and therapy. In general, patients who have chronic diseases of the immune system such as rheumatoid arthritis, lupus, scleroderma, Bechet's disease, Sjögren's syndrome or infection with human immunodeficiency virus 1 or 2 showed a worse QoL than the general population. The derivations of preferences from the SF-36v2 exhibit strong correlations with the preferences measured with the SF-6D. ConclusionsThis suggests that both the application of the SF-36v2 as the SF-6D can be important sources of preferences to implement measures in economic evaluation in healthcare. HRQL can and should be integrated into immune clinical practice. The translation of graphical results given to the clinician at the beginning of the consultation, favors the rapid analysis of global values of the patient's HRQL. This assessment can be an excellent diagnostic tool to be used routinely in clinical practice or assisting in disease management and therapeutic decision making. Apresentador:Cláudia Ribeiro, Médica Dentista. Doutoranda, Faculdade de Medicina da Universidade de Santiago de Compostela.