Nicole E Cousens1, Clara L Gaff, Martin B Delatycki, Sylvia A Metcalfe. 1. Murdoch Childrens Research Institute, Melbourne, Victoria, Australia; Department of Paediatrics, Faculty of Medicine, Dentistry and Health Sciences, The University of Melbourne, Victoria, Australia.
Abstract
OBJECTIVE: To gain a better understanding of healthcare professionals' practice and attitudes regarding prenatal β-thalassemia carrier screening in Australia. METHOD: Qualitative study with semi-structured interviews of healthcare professionals (obstetricians, general practitioners, midwives, genetic counselors, and hematologists) involved in prenatal thalassemia carrier screening in public and private practice. RESULTS: Twenty-three healthcare providers were interviewed and several themes emerged. Participants described and acknowledged inconsistencies in the β-thalassemia screening processes, such as variability in ordering the tests, communicating the diagnosis, and action taken after diagnosis. They indicated a preference for more structure and valued the importance of screening guidelines but many of those involved in ordering the screening test were unaware of their availability. These healthcare professionals recognized they lacked knowledge regarding the screening process, and many had not undertaken education activities in this area in recent times. There were mixed views about the consent process, particularly at which stage this should be obtained, and what information is provided. CONCLUSIONS: β-thalassemia screening in Victoria occurs with apparent lack of awareness of guidelines and an acknowledged preference for a more systematic process and educational support. Informed consent was not considered an important component of this screening process.
OBJECTIVE: To gain a better understanding of healthcare professionals' practice and attitudes regarding prenatal β-thalassemia carrier screening in Australia. METHOD: Qualitative study with semi-structured interviews of healthcare professionals (obstetricians, general practitioners, midwives, genetic counselors, and hematologists) involved in prenatal thalassemia carrier screening in public and private practice. RESULTS: Twenty-three healthcare providers were interviewed and several themes emerged. Participants described and acknowledged inconsistencies in the β-thalassemia screening processes, such as variability in ordering the tests, communicating the diagnosis, and action taken after diagnosis. They indicated a preference for more structure and valued the importance of screening guidelines but many of those involved in ordering the screening test were unaware of their availability. These healthcare professionals recognized they lacked knowledge regarding the screening process, and many had not undertaken education activities in this area in recent times. There were mixed views about the consent process, particularly at which stage this should be obtained, and what information is provided. CONCLUSIONS: β-thalassemia screening in Victoria occurs with apparent lack of awareness of guidelines and an acknowledged preference for a more systematic process and educational support. Informed consent was not considered an important component of this screening process.
Authors: Kim C A Holtkamp; Phillis Lakeman; Hind Hader; Suze M J P Jans; Maria Hoenderdos; Henna A M Playfair; Martina C Cornel; Marjolein Peters; Lidewij Henneman Journal: J Genet Couns Date: 2017-10-05 Impact factor: 2.537