Document Detail


Quality of life in thalassemia: a comparison of SF-36 results from the thalassemia longitudinal cohort to reported literature and the US norms.
MedLine Citation:
PMID:  21061309     Owner:  NLM     Status:  MEDLINE    
Abstract/OtherAbstract:
Thalassemia is a chronic, inherited blood disorder, which, in its most severe form, causes life-threatening anemia. Advances in treatment have led to increased life expectancy however the need for chronic blood transfusions and chelation therapy remains a significant burden for patients. Our study compared health related quality of life (HRQOL) from the Thalassemia Clinical Research Network's (TCRNs) Thalassemia Longitudinal Cohort (TLC) study to US norms and assessed association with clinical variables. There were 264 patients over age 14 who completed the Medical Outcomes Study 36-Item Short Form Health Survey version 2 (SF36v2) baseline assessment. When compared to US norms, TLC patients had statistically significant (P < 0.05) worse HRQOL on five of the eight subscales (physical functioning, role-physical, general health, social functioning, and role-emotional) and on both summary scales (physical component summary and mental component summary). Women, older patients, and those with more disease complications and side effects from chelation reported lower HRQOL. In general, adolescents and adults with thalassemia report worse HRQOL than the US population, despite contemporary therapy. The SF-36 should become a standard instrument for assessing HRQOL in thalassemia to determine predictors of low HRQOL which may be better addressed by a multidisciplinary team.
Authors:
A Sobota; R Yamashita; Y Xu; F Trachtenberg; P Kohlbry; D A Kleinert; P J Giardina; J L Kwiatkowski; D Foote; V Thayalasuthan; J B Porter; A A Thompson; L Schilling; C T Quinn; E J Neufeld;
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Publication Detail:
Type:  Journal Article; Research Support, N.I.H., Extramural; Research Support, Non-U.S. Gov't    
Journal Detail:
Title:  American journal of hematology     Volume:  86     ISSN:  1096-8652     ISO Abbreviation:  Am. J. Hematol.     Publication Date:  2011 Jan 
Date Detail:
Created Date:  2010-12-24     Completed Date:  2011-02-11     Revised Date:  2012-05-24    
Medline Journal Info:
Nlm Unique ID:  7610369     Medline TA:  Am J Hematol     Country:  United States    
Other Details:
Languages:  eng     Pagination:  92-5     Citation Subset:  IM    
Affiliation:
Children's Hospital Boston, Massachusetts, USA. amy.sobota@childrens.harvard.edu
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MeSH Terms
Descriptor/Qualifier:
Adolescent
Adult
Cohort Studies
Female
Health Surveys
Humans
Longitudinal Studies
Male
Middle Aged
Quality of Life
Questionnaires
Thalassemia / physiopathology*,  psychology*
United States
Young Adult
Grant Support
ID/Acronym/Agency:
U01 HL065238/HL/NHLBI NIH HHS; U01 HL065260/HL/NHLBI NIH HHS; UL1RR024131-01/RR/NCRR NIH HHS
Investigator
Investigator/Affiliation:
Ellis Neufeld / ; Jennifer Braunstein / ; Amber Smith / ; Latoya Lashley / ; Charles Quinn / ; Deborah Boger / ; Leah Adix / ; Sandra Richardson / ; Jeanne Boudreaux / ; Leann Hassen / ; Brigitta Mueller / ; Bogden Dino / ; Patricia Giardina / ; Elizabeth Evans / ; Mark Weinblatt / ; Linda Skelly / ; Janet Kwiatkowski / ; Marie Martin / ; Owen Beams / ; Alexis Thompson / ; Janice Beatty / ; Tiffany Drinkwater / ; Elliott Vichinsky / ; Dru Foote / ; Nancy Sweeters / ; Olivia Vega / ; Thomas Coates / ; Susan Carson / ; Eun Ha Pang / ; Rachna Khanna / ; Michael Jeng / ; Kokil Bakshi / ; John Wu / ; Heather McCartney / ; Colleen Fitzgerald / ; Stephanie Badour / ; Nancy F Olivieri / ; Vivek Thayalasuthan / ; Isaac Odame / ; Manuela Merelles-Pulcini / ; John Porter / ; Cindy Bhagwandin / ; Farrukh Shah / ; Kathryn Hassell / ; Sonja McKinlay / ; Lisa Virzi / ; Felicia Trachtenberg /

From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine


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