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PSYCHOSOCIAL AND CLINICAL BURDEN OF THALASSEMIA-INTERMEDIA AND ITS IMPLICATIONS FOR PRENATAL-DIAGNOSIS

RATIP, S; SKUSE, D; PORTER, J; WONKE, B; YARDUMIAN, A; MODELL, B; (1995) PSYCHOSOCIAL AND CLINICAL BURDEN OF THALASSEMIA-INTERMEDIA AND ITS IMPLICATIONS FOR PRENATAL-DIAGNOSIS. ARCH DIS CHILD , 72 (5) 408 - 412.

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Abstract

Twenty eight patients with thalassaemia intermedia and their parents were interviewed using specifically designed questionnaires to evaluate psychosocial burden. Hospital notes were analysed for clinical burden.A wide variation was found for both patients and parents, ranging from virtually unaffected to severely affected. Normal sexual function and setting up a family were mentioned by patients and parents as being particularly important for quality of life. Over half (58%) of the patients had problems with sexual maturation and functioning, and continuous monitoring of all patients with thalassaemia intermedia by a paediatric endocrinologist is therefore strongly indicated.Most parents said, in light of their experiences, that would opt they for prenatal diagnosis and termination of affected pregnancies even if a genotype predicting the mild form of disorder were discovered.

Type: Article
Title: PSYCHOSOCIAL AND CLINICAL BURDEN OF THALASSEMIA-INTERMEDIA AND ITS IMPLICATIONS FOR PRENATAL-DIAGNOSIS
Keywords: THALASSEMIA INTERMEDIA, PSYCHOSOCIAL, CLINICAL, PRENATAL DIAGNOSIS, BETA-THALASSEMIA, MOLECULAR-BASIS
UCL classification: UCL > School of Life and Medical Sciences
UCL > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > School of Life and Medical Sciences > Faculty of Medical Sciences > Wolfson Institute and Cancer Institute Administration > Cancer Institute
UCL > School of Life and Medical Sciences > Faculty of Medical Sciences > Wolfson Institute and Cancer Institute Administration > Cancer Institute > Research Department of Haematology
UCL > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Child Health
UCL > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health Care
UCL > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Epidemiology and Health Care > Primary Care and Population Health
URI: http://discovery.ucl.ac.uk/id/eprint/91726
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