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Open Access Research

Beliefs about chelation among thalassemia patients

Felicia L Trachtenberg1*, Lauren Mednick2, Janet L Kwiatkowski3, Ellis J Neufeld2, Dru Haines4, Zahra Pakbaz4, Alexis A Thompson5, Charles T Quinn6, Robert Grady7, Amy Sobota2, Nancy Olivieri8, Robert Horne9, Robert Yamashita10 and Thalassemia Clinical Research Network

Author Affiliations

1 New England Research Institutes, 9 Galen Street, Watertown, MA, 02472, USA

2 Boston Children’s Hospital, 300 Longwood Ave, Boston, MA, 02115, USA

3 Children's Hospital of Philadelphia, Division of Hematology, 34th Street and Civic Center Boulevard, Colket Translational Research Building, Room 11024, Philadelphia, PA, 19104, USA

4 Children’s Hospital & Research Center Oakland, Hematology/Oncology Department, 747 52nd Street, Oakland, CA, 94609, USA

5 Children’s Memorial Hospital, 2300 Children’s Plaza, Box #30, Chicago, IL, 60614, USA

6 University of Texas Southwestern Medical Center, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Ave, Cincinnati, OH, 45229, USA

7 Weill Cornell Medical College University, 525 E 68th Street, Box 103, New York, NY, 10065, USA

8 Toronto General Hospital, University Health Network, 200 Elizabeth Street, Eaton Wing North, 10th Floor, Room 225, Toronto, Ontario, M5G 2C4, Canada

9 University of London, School of Pharmacy, Mezzanine Floor, BMA House, Tavistock Square, London, WC1H 9JP, UK

10 Liberal Studies Department, California State University San Marcos, 333 S. Twin Oaks Valley Road, San Marcos, CA, 92096-0001, USA

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Health and Quality of Life Outcomes 2012, 10:148  doi:10.1186/1477-7525-10-148

Published: 7 December 2012

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

Keywords:
Thalassemia; Necessity; Concerns; Chelation; Adherence