Quality of Life in Adolescents and Adults with Thalassemia: A Report of the Thalassemia Longitudinal Cohort

Autor:	John B. Porter, Alexis A. Thompson, Robert Yamashita, Dorothy A. Kleinert, Vivekanandan Thayalasuthan, Dru Foote, Amy Sobota, Charles T. Quinn, Felicia Trachtenberg, Leann Schilling, Yan Xu, Patricia J. Giardina, Ellis J. Neufeld, Janet L. Kwiatkowski
Rok vydání:	2009
Předmět:	Gerontology education.field_of_study business.industry Thalassemia Immunology Population Gold standard Psychological intervention Cell Biology Hematology medicine.disease Biochemistry Mental health humanities Quality of life Life expectancy Medicine Population study business education
Zdroj:	Blood. 114:556-556
ISSN:	1528-0020 0006-4971
DOI:	10.1182/blood.v114.22.556.556
Popis:	Abstract 556 Background: Advances in the treatment of thalassemia have led to increased life expectancy, making outcomes such as health related quality of life (HRQOL) especially important in assessing interventions. However little has been published about the HRQOL of patients living with thalassemia. We report the baseline data from the Thalassemia Clinical Research Network's (TCRNs) Thalassemia Longitudinal Cohort (TLC) study. Patients and Methods: The TCRN is an NIH sponsored network of 16 major thalassemia centers in the US, Canada and London. This study is part of the TCRN's longitudinal cohort (TLC) study. HRQOL was measured by self-report with the Medical Outcomes Study 36-Item Short Form Health Survey version 2 (SF36v2), a generic measure of functional health status and well being with results reported as 8 subscale and two summary measures. It has been validated in numerous populations and diseases, and is considered the gold standard for measuring HRQOL. We report here the results from 245 patients over the age of 14 who completed baseline assessments. Comparisons within the study population and with US norms using t-test and linear regression were performed. Results: There were 245 patients [47% male; mean age 29 years (range 14-58)]. When compared to US norms, TLC patients had statistically significant (p Conclusions: In general, adolescents and adults with thalassemia have worse HRQOL than the US population, despite contemporary therapy. Further investigation is needed to determine predictors of low HRQOL so that these may be better addressed by a multidisciplinary team. Disclosures: No relevant conflicts of interest to declare.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_________::ad6214eb0e3086a9071089f302f7902f https://doi.org/10.1182/blood.v114.22.556.556 Zobrazit plný text záznamu