Long-term psychological effects of carrier testing and prenatal diagnosis of haemophilia: comparison with a control group

Tedgård, U.; Ljung, Rolf; McNeil, Thomas F.

doi:10.1002/(sici)1097-0223(199905)19:5<411::aid-pd551>3.0.co;2-h

Cited by 9 publications

(5 citation statements)

References 19 publications

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“…The psychological effects of carrier testing and prenatal diagnosis in haemophilia have been investigated in several studies. Reassuringly, any negative psychological impact does not seem to persist over time, as shown by the comparison of SCL‐90 (Symptom Check List) scores in haemophilia carriers who had undergone prenatal diagnosis about 5 years earlier and carriers and non‐carriers control women who had not undergone prenatal diagnosis [7]. A low tendency for somatization could be detected in carriers, mainly in women who underwent late invasive procedures like amniocentesis and foetal blood sampling.…”

Section: Carrier Testing Prenatal Diagnosis Of Haemophilia and Assismentioning

confidence: 99%

Confronting the psychological burden of haemophilia

et al. 2010

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Providing comprehensive care, counselling and support to haemophilic patients, and their parents have always been quite complex for haemophilia treatment centres. Nowadays, starting with recent developments in genetic counselling, prenatal diagnosis and carrier testing, the psychological burden on patients and parents might possibly have increased, compared with even the recent past. The emotional strains and worries associated with a possibly affected newborn and his care through childhood and adolescence may also have a grievous impact on couple dynamics and marital relationship. The impact may be even higher in families in which haemophilia is newly diagnosed. The main psychological problems faced by parents and then by affected individuals are herein chronologically reviewed, starting from genetic counselling before conception through childhood, adolescence and adulthood. Aware of the psychosocial burden on patients and their families associated with haemophilia, from prenatal diagnosis and carrier testing until later stages of life of the affected individual, a board of Italian haemophilia specialists and psychologists is designing and organizing an innovative network of psychological support services in some Italian haemophilia centres and promoting specific educational programmes in this setting.

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Section: Carrier Testing Prenatal Diagnosis Of Haemophilia and Assismentioning

confidence: 99%

Confronting the psychological burden of haemophilia

et al. 2010

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“…A carrier of haemophilia and her partner face difficult choices regarding reproduction (with half of the sons being at risk of having haemophilia) and the different options of PND. The choices can be influenced by psychological, ethical, cultural and family‐related factors . The main reasons for PND may be to prevent the birth of a haemophilia‐affected boy by termination of the pregnancy, to prepare for the obstetrical procedures or, for the parents‐to‐be, to be psychologically prepared for having a child with haemophilia.…”

Section: Introductionmentioning

confidence: 99%

Prenatal diagnosis of haemophilia in Sweden now more commonly used for psychological preparation than termination of pregnancy

2014

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The aims of the study were to define the frequency, outcome and reasons for prenatal diagnosis (PND) in Sweden during a 30-year period in order to study trends and changes. The study population, from the Swedish nationwide registry of PND of haemophilia, consisted of 54 women, compromising >95% of all, who underwent PND (n = 90) of haemophilia during 1977-2013. PND was performed by amniocentesis (n = 10), chorionic villus sampling (n = 64) or by analysis of foetal blood (n = 16). A total of 27/90 foetuses were found to have haemophilia. Sixteen went to termination and the remaining 11 were born during the end of the study period (2000-2013). Three of 90 pregnancies were terminated due to findings other than haemophilia and 3/90 PNDs led to miscarriage. In the 30 families with known haemophilia, PNDs (n = 55) were used in 27/55 cases for 'psychological preparation' and in 23/55 cases with the aim to terminate the pregnancy. A subgroup of women (n = 17) who consecutively underwent PND in the years 1997-2010 were further interviewed. For 11/17, being a carrier had a negative effect on the decision to become pregnant, and in 11 cases PND had influenced their decision to conceive. Our study show that PND of haemophilia is stable over time but increasingly used during the last decade as a psychological preparation for having a child with haemophilia as compared to earlier where more terminations of pregnancies were conducted.

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“…This view has now changed. Studies have shown that one‐third of carriers offered prenatal diagnosis will take it up, and that, of these, half opted to continue with their pregnancy following a positive result [7,8].…”

Section: Antenatal Diagnosis Professor Steve Robson Professor Of Fementioning

confidence: 99%

The Genetics of bleeding disorders: a report on the UK Haemophilia Centre Doctors’ Organisation annual scientific symposium, 10th October 2003

2004

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The UK Haemophilia Centre Doctors' Organisation (UKHCDO) held its annual scientific symposium in October 2003, at the International Centre for Life, Newcastle-upon-Tyne. The educational day covered a range of topics relating to the genetics of bleeding disorders, including advances in genetics and gene therapy, antenatal diagnosis and counselling. We present the proceedings from the educational day.

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Long-term psychological effects of carrier testing and prenatal diagnosis of haemophilia: comparison with a control group

Cited by 9 publications

References 19 publications

Confronting the psychological burden of haemophilia

Confronting the psychological burden of haemophilia

Prenatal diagnosis of haemophilia in Sweden now more commonly used for psychological preparation than termination of pregnancy

The Genetics of bleeding disorders: a report on the UK Haemophilia Centre Doctors’ Organisation annual scientific symposium, 10th October 2003

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