Document Detail

Quality of life in patients with thalassemia intermedia compared to thalassemia major.
MedLine Citation:
PMID:  16339697     Owner:  NLM     Status:  MEDLINE    
The impact of thalassemia major and thalassemia intermedia and their associated complications on quality of life (QOL) is largely unknown. Determining the degree of health impairment as perceived by the patient is essential information needed to recommend suitable therapy. The objective of this study was to evaluate QOL in transfusion-independent patients with thalassemia (non-Tx) compared with that in transfused patients (Tx) and to identify the factors that affect QOL in thalassemia. A convenient sample of 48 thalassemia patients (29 Tx and 19 non-Tx) with mean age of 14.6 years (SD = 7.5 years) were selected during a comprehensive visit to complete a Dartmouth Primary Care Cooperative Information Chart System (COOP) questionnaire. Patients rated QOL from excellent (1) to poor (5) on five dimensions of health status. Scores of 4 or 5 represent major limitations. These results were augmented by a brief medical history and chart review. Forty-one percent of Tx patients and 47% of non-Tx patients reported severe impairments in 1-6 and 1-2 domains, respectively. The most commonly reported affected domains were feelings such as anxiety, depression, and concern of overall health status or indications of recent deterioration in health. In contrast with previous beliefs, transfusion-independent thalassemia patients also suffer serious impairment in QOL. Presented data suggest that all patients with thalassemia undergo QOL assessment so that interventions focused on affected domains can be implemented.
Zahra Pakbaz; Marsha Treadwell; Robert Yamashita; Keith Quirolo; Drucilla Foote; Laura Quill; Titi Singer; Elliott P Vichinsky
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Publication Detail:
Type:  Comparative Study; Journal Article; Research Support, U.S. Gov't, P.H.S.    
Journal Detail:
Title:  Annals of the New York Academy of Sciences     Volume:  1054     ISSN:  0077-8923     ISO Abbreviation:  Ann. N. Y. Acad. Sci.     Publication Date:  2005  
Date Detail:
Created Date:  2005-12-12     Completed Date:  2006-07-13     Revised Date:  2007-11-14    
Medline Journal Info:
Nlm Unique ID:  7506858     Medline TA:  Ann N Y Acad Sci     Country:  United States    
Other Details:
Languages:  eng     Pagination:  457-61     Citation Subset:  IM    
Children's Hospital & Research Center at Oakland, 747 52nd St., Oakland, CA 94609, USA.
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MeSH Terms
Activities of Daily Living
Blood Transfusion / psychology
Pain / etiology
Physical Fitness
Quality of Life*
Social Behavior
Social Support
beta-Thalassemia / classification,  complications,  psychology*,  therapy
Grant Support
5H46MC0001211//PHS HHS

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