Carrier testing and prenatal diagnosis of haemophilia - utilisation and psychological consequences

Haemophilia

Volumn 4, Issue 4, 1998, Pages 365-369

  Tedgard U ^a,b  

^a LUND UNIVERSITY   (Sweden)

^b LUND UNIVERSITY HOSPITAL   (Sweden)

Author keywords

Carrier testing; Haemophilia; Prenatal diagnosis; Psychology; Risk factors

Indexed keywords

ATTITUDE; CHORION VILLUS SAMPLING; CONFERENCE PAPER; FIRST TRIMESTER PREGNANCY; FOLLOW UP; HEALTH CARE UTILIZATION; HEMOPHILIA; HETEROZYGOTE DETECTION; HUMAN; INDUCED ABORTION; MENTAL STRESS; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; PSYCHOLOGICAL ASPECT; RELIGION; SWEDEN;

EID: 0031858613     PISSN: 13518216     EISSN: None     Source Type: Journal    
DOI: 10.1046/j.1365-2516.1998.440365.x     Document Type: Conference Paper

References (29)

1. Otto JC. An account of an haemorrhagic disposition existing in certain families. Med Repository 1803; 6: 1-4.
2. Bröcker-Vriends AHJT, Briet E, Kanhai HHH, Bakker E, Dreesen JCFM, Leschot NJ, et al First trimester prenatal diagnosis of haemophilia A: Two years' experience. Prenat Diagn 1988; 8: 411-21.
3. Evers-Kiebooms G, Swertz A, van den Berghe H. Psychological aspects of amniocentesis: anxiety feelings in three different risk groups. Clin Genet 1988; 33: 196-206.
4. Sjögren B, Uddenberg N. Prenatal diagnosis for psychological reasons: comparison with other indications, advanced maternal age and known genetic risk. Prenat Diagn 1990; 10: 111-20.
5. Lippman A, Tracy BP, Mandel S, Cartier L. Chorionic villus sampling: Women's attitudes. Am J Med Genet 1985; 22: 395-401.
6. Tedgård U, Ljung R, McNeil T, Tedgård E, Schwartz M. How do carriers of hemophilia experience prenatal diagnosis (PD)? Carrier's immediate and later reactions to amniocentesis and fetal blood sampling. Acta Paediatr Scand 1989; 78: 692-700.
7. Spencer JW, Cox DN. Emotional responses of pregnant women to chorionic villus sampling or amniocentesis. Am J Obstet Gynecol 1987; 157: 1155-60.
8. Larsson SA. Life expectancy of Swedish haemophiliacs, 1831-1980. Br J Haematol 1985; 59: 593-602.
9. Triemstra M, Rosendaal FR, Smit C, van der Ploeg HM, Briët E. Mortality in patients with hemophilia. Ann Intern Med 1995; 123: 823-7.
10. Nilsson IM, Berntorp E, Löfqvist T, Pettersson H. Twenty-five years' experience of prophylactic treatment in severe haemophilia A and B. J Int Med 1992; 232: 25-32.
11. Varekanp I, Suurmeijer TPBM, Bröcker-Vriends AHJT, van Dijck H, Smit C, Rosendaal FR, Briët E. Carrier testing and prenatal diagnosis for hemophilia: Experiences and attitudes of 549 potential and obligate carriers. Am J Med Genet 1990; 37: 147-54.
12. Varekanp I, Suurmeijer T, Bröcker-Vriends A, Rosendaal FR. Hemophilia and the use of genetic counselling and carrier testing within family networks. Birth Defects 1992; 28: 139-48.
13. Varekanp I, Suurmeijer TPBM, Rosendaal FR, Bröcker-Vriends AHJT. The use of preventive health care services: carrier testing for the genetic disorder haemophilia. Soc Sci Med 1993; 37: 639-48.
14. Markova I, Forbes CD, Aledort LM, Inwood M, Mandalaki T, Miller CH, Pittadaki J. A comparison of the availability and content of genetic counselling as perceived by hemophilic men and carriers in the USA, Canada, Scotland, and Greece. Am J Med Genet 1986; 24: 7-21.
15. Evers-Kiebooms G, Denayer L, Welkenhuysen M, Cassiman J-J, Van den Berghe H. A stigmatizing effect of the carrier status for cystic fibrosis? Clin Genet 1994; 46: 336-43.
16. Denayer L, Welkenhuysen M, Evers-Kiebooms G, Cassiman J-J, Van den Berghe H. The CF carrier status is not associated with a diminished self-concept or increased anxiety: results of psychometric testing after at least 1 year. Clin Genet 1996; 49: 232-6.
17. Axworthy D, Broock DJH, Bobrow M, Marteau TM. Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. Lancet 1996; 347: 1443-6.
18. Tedgård U, Ljung R, McNeil T. Unpublished data from an interview study of carriers of haemophilia with experience of prenatal diagnosis by fetal blood sampling (n=29), chorionic villus sampling (n=28) and a group with no experience of prenatal diagnosis (n=17).
19. Tedgård U, Ljung R, McNeil TF. Symptoms of psychological stress and discomfort measured by the Symptom Check List after prenatal diagnosis of haemophilia by chorionic villus sampling and gene analysis. Haemophilia 1996; 2: Suppl 1: 127.
20. Francis RB, Kasper CK. Reproduction in Hemophilia. JAMA 1983; 250: 3192-5.
21. Lubs M-L. Does genetic counselling influence risk attitudes and decision making? Birth Defects 1979; 15: 355-67.
22. Kraus EM, Brettler DB. Assessment of reproductive risks and intentions by mothers of children with haemophilia. Am J Med Genet 1988; 31: 259-67.
23. Ljung R, Kling S, Tedgard U. The impact of prenatal diagnosis on the incidence of haemophilia in Sweden. Haemophilia 1995; 1: 190-3.
24. Hoyer LW, Carta CA, Golbus MS, Hobbins JC, Mahoney MJ. Prenatal diagnosis of classic hemophilia (Hemophilia A) by immunoradiometric assays. Blood 1985; 65: 1312-7.
25. Beeson D, Golbus MS. Decision making: Whether or not to have prenatal diagnosis and abortion for X-linked conditions. Am J Med Genet 1985; 20: 107-14.
26. Markova I, Forbes CD, Inwood M. The consumers' views of genetic counselling of hemophilia. Am J Med Genet 1984; 17: 741-52.
27. Tedgård U, Ljung R, McNeil T, Tedgård E. How do carriers of haemophilia and their spouses experience prenatal diagnosis by chorionic villi sampling (CVS)? XXI Int Congr WFH. Mexico City, 1994, Abstract 101.
28. Tedgård U, Ljung R, McNeil T, Tedgård E. Identifying carriers at high risk for negative reactions when performing prenatal diagnosis of haemophilia. Haemophilia 1997; 3: 123-30.
29. Donnai P, Charles N, Harris R. Attitudes of patients after "genetic" termination of pregnancy. Br Med J 1981; 282: 621-2.