PMID: 7618906May 1, 1995

Psychosocial and clinical burden of thalassaemia intermedia and its implications for prenatal diagnosis

Archives of Disease in Childhood
S RatipB Modell

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 they would opt for prenatal diagnosis and termination of affected pregnancies even if a genotype predicting the mild form of disorder were discovered.

References

Feb 1, 1979·Psychological Medicine·D P Goldberg, V F Hillier
Nov 1, 1992·Journal of Medical Genetics·M PetrouB Modell
Mar 1, 1987·British Journal of Haematology·S L TheinDavid J Weatherall
Dec 1, 1987·Blood Reviews·J S WainscoatDavid J Weatherall
Jul 1, 1988·British Journal of Haematology·R Di MarzoH H Kazazian
May 1, 1967·Journal of Child Psychology and Psychiatry, and Allied Disciplines·M Rutter
Mar 7, 1981·Lancet·David J WeatherallJ B Clegg
Aug 1, 1981·British Journal of Haematology·Maria Domenica CappelliniL F Bernini
Mar 1, 1983·British Journal of Haematology·J S WainscoatDavid J Weatherall

Citations

Nov 9, 2006·Indian Journal of Pediatrics·Atika KhuranaR K Marwaha
Jun 14, 2008·Internal and Emergency Medicine·Giuseppina MessinaMaria Domenica Cappellini
Apr 19, 2013·International Journal of Hematology·Sohier YahiaA K Mansour
Jan 10, 2002·Fertility and Sterility·Vicki PsihogiosDonald K Bowden
Apr 17, 1998·International Journal of Gynaecology and Obstetrics : the Official Organ of the International Federation of Gynaecology and Obstetrics·C WanapirakA Tuggapichitti
Feb 1, 2003·Social Science & Medicine·Duran CanatanRüya Cosan
Aug 17, 2005·Medical Principles and Practice : International Journal of the Kuwait University, Health Science Centre·Adekunle AdekileFerdane Kutlar
Aug 1, 2012·Patient Preference and Adherence·Georgios N LyrakosMarouso Drosou-Servou
Dec 13, 2005·Annals of the New York Academy of Sciences·P TelferM Angastiniotis
Dec 13, 2005·Annals of the New York Academy of Sciences·Zahra PakbazElliott P Vichinsky
Mar 24, 2011·Child: Care, Health and Development·H F Gharaibeh, M K Gharaibeh
Apr 17, 2009·IEEE Transactions on Information Technology in Biomedicine : a Publication of the IEEE Engineering in Medicine and Biology Society·Altug AkayBrian W Pogue
Mar 21, 2006·Journal of Pediatric Nursing·Despina Sapountzi-KrepiaSharon Van Shell
Jul 19, 2008·Value in Health : the Journal of the International Society for Pharmacoeconomics and Outcomes Research·Diana RofailKrista Payne
Mar 15, 2003·Clinical Pediatrics·Pattra ThanarattanakornTorpong Sanguansermsri
Feb 21, 2018·Journal of Pediatric Hematology/oncology·Huda GharaibehMohammed Al Bashtawy
Mar 8, 2014·The Cochrane Database of Systematic Reviews·Kofi A Anie, Pia Massaglia
Sep 30, 2006·Health and Quality of Life Outcomes·Linda AbetzDiana Rofail
Jun 19, 2008·Bone Marrow Transplantation·D K L CheukG C F Chan
May 8, 2009·Pediatrics International : Official Journal of the Japan Pediatric Society·Huda GharaibehSuzan Z Zamzam
Mar 2, 2019·American Journal of Medical Genetics. Part a·Neha KumarRajiv N Rimal
Jul 21, 1998·Annals of the New York Academy of Sciences·C Politis
Apr 16, 2008·British Journal of Haematology·Nancy F OlivieriDavid J Weatherall
Jun 13, 2003·International Journal of Nursing Practice·Chitra Kumari Nahalla, Mary FitzGerald
May 1, 1996·Journal of Advanced Nursing·E N Anionwu
Apr 16, 2003·Haemophilia : the Official Journal of the World Federation of Hemophilia·C ClementeR Miller
Feb 15, 2002·Clinical and Laboratory Haematology·L RigoliI Barberi

Related Concepts

Abortion on Demand
Attitude to Health
Family Health Status
Embryopathies
Step-parent
Antenatal Screening Procedures
Social Isolation
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