title: Beliefs about chelation among thalassemia patients.
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<0.001). Self-reported adherence to chelation was not associated with views about necessity or concerns, but negatively correlated with perceived sensitivity to DFO (Sensitive Soma scale; r=-0.23, p=0.01) and side effects of oral chelation (r=-0.14, p=0.04). High ferritin iron levels, potentially indicating lower adherence, were found in 41% of patients reporting low necessity of oral chelation compared to 24% reporting high necessity (p=0.048). Concerns about treatment were associated with lower quality of life and more symptoms of anxiety and depression.
  
  
  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.
authors.affiliation: New England Research Institutes, 9 Galen Street, Watertown, MA, 02472, USA. FTrachtenberg@neriscience.com
authors.forename: Felicia L
authors.initials: FL
authors.lastname: Trachtenberg
authors.forename: Lauren
authors.initials: L
authors.lastname: Mednick
authors.forename: Janet L
authors.initials: JL
authors.lastname: Kwiatkowski
authors.forename: Ellis J
authors.initials: EJ
authors.lastname: Neufeld
authors.forename: Dru
authors.initials: D
authors.lastname: Haines
authors.forename: Zahra
authors.initials: Z
authors.lastname: Pakbaz
authors.forename: Alexis A
authors.initials: AA
authors.lastname: Thompson
authors.forename: Charles T
authors.initials: CT
authors.lastname: Quinn
authors.forename: Robert
authors.initials: R
authors.lastname: Grady
authors.forename: Amy
authors.initials: A
authors.lastname: Sobota
authors.forename: Nancy
authors.initials: N
authors.lastname: Olivieri
authors.forename: Robert
authors.initials: R
authors.lastname: Horne
authors.forename: Robert
authors.initials: R
authors.lastname: Yamashita
mesh_terms: D000293:Adolescent; D000328:Adult; D015913:Chelation Therapy; D002648:Child; D002675:Child, Preschool; D003676:Deferoxamine / Q000627:therapeutic use*; D005260:Female; D005293:Ferritins / Q000097:blood; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008131:London; D008137:Longitudinal Studies; D008297:Male; D055118:Medication Adherence; D008875:Middle Aged; D009656:North America; D017262:Siderophores / Q000627:therapeutic use*; D011795:Surveys and Questionnaires; D013789:Thalassemia / Q000188:drug therapy* / Q000523:psychology; D055815:Young Adult
chemical_list: D017262:Siderophores; D005293:Ferritins; D003676:Deferoxamine