Audit of prenatal diagnosis for haemoglobin disorders in the United Kingdom: the first 20 years

Modell, Bernadette; Petrou, Mary; Layton, Mark; Varnavides, L.; Slater, Chris; Ward, R. H. T.; Rodeck, CH; Nicolaides, Kypros H.; Gibbons, S; Fitches, Alison C.; Old, John

doi:10.1136/bmj.315.7111.779

Cited by 68 publications

(63 citation statements)

References 17 publications

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“…Numerous past studies showed that couples at risk of having a child with β-thalassemia major are in favor of termination of an affected pregnancy, in particular if prenatal diagnosis and termination of pregnancy are offered in the first trimester of pregnancy (Petrou et al 1990;Modell et al 1997;Ahmed et al 2000;Ahmed et al 2006b). Likewise, based on our findings, the participants also reported that the gestational age at the time of the offer of termination of pregnancy is important in deciding about an abortion.…”

Section: Discussionmentioning

confidence: 99%

A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs

2011

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Hemoglobin disorders which include thalassemias are the most common heritable disorders. Effective treatment is available, and these disorders can be avoided as identification of carriers is achievable using simple hematological tests. An in-depth understanding of the awareness, attitudes, perceptions, and screening reservations towards thalassemia is necessary, as Malaysia has a multi-ethnic population with different religious beliefs. A total of 13 focus group discussions (70 participants) with members of the general lay public were conducted between November 2008 and January 2009. Lack of knowledge and understanding about thalassemia leads to general confusions over differences between thalassemia carriers and thalassemia major, inheritance patterns, and the physical and psychologically impact of the disorder in affected individuals and their families. Although most of the participants have not been tested for thalassemia, a large majority expressed willingness to be screened. Views on prenatal diagnosis and termination of fetuses with thalassemia major received mixed opinions from participants with different religions and practices. Perceived stigma and discrimination attached to being a carrier emerged as a vital topic in some group discussions where disparity in the answers exhibited differences in levels of participants' literacy and ethnic origins. The two most common needs identified from the discussion were information and screening facilities. Participants' interest in knowing the severity of the disease and assessing their risk of getting the disorder may imply the health belief model as a possible means of predicting thalassemia public screening services. Findings provide valuable insights for the development of more effective educational, screening, and prenatal diagnostic services in the multi-ethnic Asian society.

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Section: Discussionmentioning

confidence: 99%

A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs

2011

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“…Raising awareness of Islamic teaching on termination might also help. 20,24,27 Previous work has found the main reason parents of Pakistani origin had comparatively lower use of prenatal diagnosis 28 was not Muslim objection to termination but, rather, inequality in service delivery. Screening was not undertaken or timely choices and options were not provided.…”

Section: Comparison With Existing Literaturementioning

confidence: 99%

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Locock

Kai²

2008

Br J Gen Pract

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“…Decision making about prenatal diagnosis, however, is multifaceted and it is impossible to generalize (de Montalembert et al, 1996;Modell et al, 1997;Atkin et al, 1998;Ahmed, et al, 2000;Parker et al, 2002;Tsianakas and Liamputtong, 2002). Even among Muslim populations, who demonstrate even greater reluctance to terminate pregnancies than other religious groups, one study has shown that 67 per cent say that they would consider termination following a prenatal diagnosis of thalassaemia (Hewison et al, 2004).…”

Section: Religious Identity and Decision Makingmentioning

confidence: 99%

Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders

et al. 2008

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Audit of prenatal diagnosis for haemoglobin disorders in the United Kingdom: the first 20 years

Cited by 68 publications

References 17 publications

A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs

A holistic approach to education programs in thalassemia for a multi-ethnic population: consideration of perspectives, attitudes, and perceived needs

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders

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