1. Beliefs about chelation among thalassemia patients
- Author
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Zahra Pakbaz, Janet L. Kwiatkowski, Nancy F. Olivieri, Rob Horne, Robert W. Grady, Lauren Mednick, Ellis J. Neufeld, Robert Yamashita, Alexis A. Thompson, Charles T. Quinn, Amy Sobota, Dru Haines, and Felicia Trachtenberg
- Subjects
Adult ,Male ,Pediatrics ,medicine.medical_specialty ,Health Knowledge, Attitudes, Practice ,Adolescent ,Congenital blood disorder ,Thalassemia ,Siderophores ,Deferoxamine ,lcsh:Computer applications to medicine. Medical informatics ,Medication Adherence ,03 medical and health sciences ,Young Adult ,0302 clinical medicine ,Quality of life ,Surveys and Questionnaires ,London ,medicine ,Humans ,Chelation ,030212 general & internal medicine ,Chelation therapy ,Longitudinal Studies ,Young adult ,Necessity ,Child ,business.industry ,Research ,Public Health, Environmental and Occupational Health ,General Medicine ,Iron chelation therapy ,Middle Aged ,medicine.disease ,Chelation Therapy ,3. Good health ,Adherence ,030220 oncology & carcinogenesis ,Child, Preschool ,Ferritins ,North America ,Concerns ,lcsh:R858-859.7 ,Female ,business ,medicine.drug - Abstract
Background Understanding patients’ views about medication is crucial to maximize adherence. Thalassemia is a congenital blood disorder requiring chronic blood transfusions and daily iron chelation therapy. Methods The Beliefs in Medicine Questionnaire (BMQ) was used to assess beliefs in chelation in thalassemia patients from North America and London in the Thalassemia Longitudinal Cohort (TLC) of the Thalassemia Clinical Research Network (TCRN). Chelation adherence was based on patient report of doses administered out of those prescribed in the last four weeks. Results Of 371 patients (ages 5-58y, mean 24y), 93% were transfused and 92% receiving chelation (26% deferoxamine (DFO; a slow subcutaneous infusion via portable pump), 63% oral, 11% combination). Patients expressed high “necessity” for transfusion (96%), DFO chelation (92%) and oral chelation (89%), with lower “concern” about treatment (48%, 39%, 19% respectively). Concern about oral chelation was significantly lower than that of DFO (p Conclusions Despite their requirement for multimodal therapy, thalassemia patients have positive views about medicine, more so than in other disease populations. Patients may benefit from education about the tolerability of chelation and strategies to effectively cope with side effects, both of which might be beneficial in lowering body iron burden. Clinicaltrials.gov identifier NCT00661804
- Published
- 2012