Estudo da adesão e da qualidade de vida dos pacientes dos pacientes com hemofilia A e B, em regime de profilaxia, atendidos em centro de referência no Ceará
Year: 2023
Type: dissertation
Study design: Observational Study
Abstract: Hereditary haemophilia, considered a rare disease, is an X-linked coagulopathy \ncharacterized by the absence or deficiency of Factor VIII in Haemophilia A and \nFactor IX in Haemophilia B. The main clinical signs that characterize haemophilia \nare intra-articular (haemarthrosis), muscle or other tissue or cavity bleeding. \nProphylactic treatment of deficient factor infusion is currently the gold standard to \nprevent hemarthroses, which if recurrent can compromise the joints causing \nhemophilic arthropathy, which considerably affects the quality of life of this group of \npatients. It is known that non-adherence to drug treatment is the main obstacle to \nsuccessful pharmacotherapy in chronic and outpatients. And the control of bleeding \nin patients with hemophilia is more effective in those who follow the \nrecommendations of their treatments, with consequent improvement in quality of life. \nThe objective of this study was to evaluate the adherence and quality of life of \npeople with hemophilia A and B, on a prophylaxis regimen, attended at the \nHematology and Hemotherapy Center of Ceará, in Fortaleza. This is a crosssectional, observational and descriptive study, carried out between June 29 and \nOctober 10, 2022, at the Hemoce outpatient clinic in Fortaleza. Patients with \nHemophilia A or B, on prophylaxis for at least 12 months and without an inhibitor \nparticipated in the study. A questionnaire was applied to assess the \nsociodemographic, clinical and treatment profile, and two other specific ones: one to \nassess adherence, the VERITAS-Pro, with 6 domains of evaluation and a cut-off \npoint for adherence as <57; and another to assess quality of life, the SF-36 with 8 \ndomains, with a general scale ranging from 0 to 100, and the closer to 100 the \nbetter the quality of life. In addition, adherence was estimated through the ratio of \ndoses dispensed and prescribed doses of procoagulant factors in the 12-month \nperiod, and consultations were made in medical records and computerized systems \nto check clinical and treatment variables. The final sample was 106 patients, 67,0% \nof whom were adults, 87,7% had hemophilia A, and 90,5% were severe. \nConsidering the scores of the questionnaires used, for VERITAS-Pro, the mean was \n40,9 with a minimum of 24 and a maximum of 67, obtaining that 93,4% of the \npopulation studied had adherence to treatment; for SF-36, the mean was 68,0 with \nbetter scores in the domains of Mental Health (85,0) and Social Support (72,4), and \nworse scores for Pain (59,3) and General Health Status (57,3). The assessment of \nadherence by the ratio of Dispensed Doses to Prescribed Doses was below the \nresult shown by VERITAS-Pro, with only 50,9% of patients with adherence. The \nMann-Whitney test was applied to correlate the quality of life by SF-36 and the \nadherence classification by VERITAS-Pro, and it was realized that, for this sample, \nthere was no significant correlation (p >0,F05). In view of the results found, a high \nrate of adherence to prophylactic treatment and a good quality of life were obtained \nin the study population. It is hoped that these results can serve as a basis for further \nresearch on the subject, in order to better understand the profile of people with \nhemophilia, and to propose continuous improvements to promote adherence to \ntreatment and quality of life.
Author: Beserra, Nathália Martins
Language: English
Subfield: Hematology
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W7047063307