Effect of introducing antenatal diagnosis on reproductive behaviour of families at risk for thalassaemia major.

Modell, Bernadette; Ward, R. H. T.; Fairweather, D. V. I.

doi:10.1136/bmj.280.6228.1347

Cited by 108 publications

(42 citation statements)

References 15 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Facing the problems of children with Cooley anaemia seemed to have a braking effect on the number of children born so that those mothers who experienced these problems earlier (with their 1st or 2nd child affected) had significantly fewer children than others. It has been shown, for example in the United Kingdom, that there are appreciable differences between different ethnic groups in their acceptance of genetic counselling [10].…”

Section: Discussionmentioning

confidence: 99%

Reproductive behaviour of mothers of children with beta-thalassaemia major

Habibzadeh¹,

Yadollahie²,

Roshanipoor³

et al. 2012

East Mediterr Health J

View full text Add to dashboard Cite

Thalassaemia is the most common monogenic autosomal hereditary disease worldwide. This questionnaire-based cross-sectional study looked at the reproductive behaviour of 156 mothers of children affected with beta-thalassaemia major (Cooley anaemia) in Fars province, southern Islamic Republic of Iran. Regardless of the number of affected children, the parents of children with Cooley anaemia had an average of 3 unaffected children, the same as the average for the provincial population. The findings indicate that reproductive compensation occurs in families with a child with Cooley anaemia in this province. Genetic counselling, either before marriage or after the birth of the first affected child, had a significant effect on lowering the number of children born. 1Medical Education and Research Centre, National Iranian Oil Company Health Organization, Shiraz, Islamic Republic of Iran (Correspondence to F. Habibzadeh: farrokh.habibzadeh@gmail.com RÉSUMÉ La thalassémie est la maladie héréditaire monogénique à transmission autosomique la plus fréquente dans le monde. La présente étude transversale reposant sur un questionnaire a évalué le comportement en matière de procréation de 156 mères d'enfants affectés par une β-thalassémie majeure (aussi appelée anémie de Cooley) dans la province de Fars (sud de la République islamique d'Iran). Sans tenir compte du nombre d'enfants affectés, les parents d'enfants atteints d'une anémie de Cooley avaient en moyenne trois enfants non touchés par la maladie, c'est-à-dire le même nombre que dans la population de la province. Les résultats indiquent qu'une compensation reproductrice se produit dans les familles ayant un enfant atteint de l'anémie de Cooley dans cette province. Les conseils génétiques, soit avant le mariage soit après la naissance du premier enfant affecté, ont eu un effet significatif sur la réduction du nombre d'enfants nés.‫املتوسط‬ ‫لرشق‬ ‫الصحية‬ ‫املجلة‬ ‫عرش‬ ‫الثامن‬ ‫املجلد‬ ‫الثالث‬ ‫العدد‬ 247

show abstract

Section: Discussionmentioning

confidence: 99%

Reproductive behaviour of mothers of children with beta-thalassaemia major

Habibzadeh¹,

Yadollahie²,

Roshanipoor³

et al. 2012

East Mediterr Health J

View full text Add to dashboard Cite

show abstract

“…No official data on the abortion rate due to thalassemia major in Malaysia has been collected as abortions are illegal in this country unless the mother's life is at risk. Reports in other countries have indicated that most affected couples will request termination of a pregnancy after diagnosis of major fetal abnormality (Modell et al 1980;Ahmed et al 2006b) and that the perception of disease severity is the main reason in a woman's decisions to terminate a pregnancy (Ahmed et al 2006b).…”

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

View full text Add to dashboard Cite

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.

show abstract

“…The impact of the introduction of prenatal diagnosis on reproductive confidence was first documented in Greek Cypriot families living in Britain who were at risk for -thalassaemia. 4 Table 1 is based on 25 couples who have passed through three phases in their reproductive life -no knowledge of the genetic risk; knowledge of the 25% chance of an affected child, but no prenatal diagnosis available; knowledge of the genetic risk and an offer of prenatal diagnosis/selective abortion. It can be seen that they virtually stopped having babies when they had the genetic knowledge alone, but increased their pregnancy rate when prenatal diagnosis became available.…”

Section: Genetic Disease and Reproductive Confidencementioning

confidence: 99%

In the light of preimplantation genetic diagnosis: some ethical issues in medical genetics revisited

Pembrey

1998

Eur J Hum Genet

View full text Add to dashboard Cite

Effect of introducing antenatal diagnosis on reproductive behaviour of families at risk for thalassaemia major.

Cited by 108 publications

References 15 publications

Reproductive behaviour of mothers of children with beta-thalassaemia major

Reproductive behaviour of mothers of children with beta-thalassaemia major

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

In the light of preimplantation genetic diagnosis: some ethical issues in medical genetics revisited

Contact Info

Product

Resources

About