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Prenatal screening for cystic fibrosis carriers: an economic evaluation.

ABSTRACT: The cloning of the CFTR gene has made it technically possible to avert the unwanted birth of a child with cystic fibrosis (CF). Several large trials offering prenatal CF carrier screening suggest that such screening is practical and that identified carriers generally use the information obtained. Therefore, a critical question is whether the cost of such screening is justified. Decision analysis was performed that used information about choices that pregnant women were observed to make at each stage in the Rochester prenatal carrier-screening trial. The cost of screening per CF birth voluntarily averted was estimated to be $1,320,000-$1,400,000. However, the lifetime medical cost of the care of a CF child in today's dollars was estimated to be slightly>$1,000,000. Therefore, despite both the high cost of carrier testing and the relative infrequency of CF conceptions in the general population, the averted medical-care cost resulting from choices freely made are estimated to offset approximately 74%-78% of the costs of a screening program. At present, if it is assumed that a pregnancy terminated because of CF is replaced, the marginal cost for prenatal CF carrier screening is estimated to be $8,290 per quality-adjusted life-year. This value compares favorably with that of many accepted medical services. The cost of prenatal CF carrier screening could fall to equal the averted costs of CF patient care if the cost of carrier testing were to fall to $100.

SUBMITTER: Rowley PT

PROVIDER: S-EPMC1377475 | biostudies-other | 1998 Oct

REPOSITORIES: biostudies-other

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Prenatal screening for cystic fibrosis carriers: an economic evaluation.

Rowley P T PT Loader S S Kaplan R M RM

American journal of human genetics 19981001 4

The cloning of the CFTR gene has made it technically possible to avert the unwanted birth of a child with cystic fibrosis (CF). Several large trials offering prenatal CF carrier screening suggest that such screening is practical and that identified carriers generally use the information obtained. Therefore, a critical question is whether the cost of such screening is justified. Decision analysis was performed that used information about choices that pregnant women were observed to make at each s ...[more]

PMID: 9758600

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Project description:Cystic fibrosis (CF) is one of the most frequent genetic disorders in those with Northern European ancestry. Prenatal testing for cystic fibrosis may be used to plan and prepare for the birth of a child with the disease or to determine whether to terminate the pregnancy. The accessibility of prenatal detection for women with a high genetic risk of delivering a child with cystic fibrosis is determined by CF carriers and those affected by the disease. Moreover, prenatal testing for CF is mainly dependent on invasive diagnostic tests that can influence the mental health of the pregnant woman, and it is assumed that the birth of a CF child will have a serious influence on the couple’s subsequent family planning and marital behavior. The purpose of this research was to examine the marital attitudes of women at risk for cystic fibrosis and the psychological effect of screening for CF among pregnant women. The study followed a cross-sectional design with five questionnaires comprising Prenatal Attachment Interview (PAI), Maternal Antenatal Attachment Scale (MAAS), Pregnancy-Related Anxiety Questionnaire (PRAQ-R2), the Prenatal Psychosocial Profile (PPP), and the Marital Intimacy Questionnaire (MIQ). A total of 84 pregnant women were included in the “carriers” group for CFTR and 91 in the “non-carrier” group. CFTR-carrier mothers were likely to be more affectionate to the fetus, with better maternal–fetal quality and intensity of attachment. The same group of pregnant women was less scared of giving birth or worried about bearing a physically or mentally handicapped child compared to women who were expecting the prenatal diagnosis test for being at risk of delivering a newborn with malformations. CFTR-carrier pregnant women did not score significantly different results in the Prenatal Psychosocial Profile regarding stress levels, social support, and self-esteem. It was also found that intimacy and consensus problems inside the marriage were significantly more often experienced by CFTR carriers. Based on the current findings, it is likely that CFTR-carrier mothers have a better perception of the possible pregnancy outcomes by knowing their abnormal gene carrier status. Therefore, the psychological impact of invasive diagnostic tests is lower in this category compared with those who are unaware of the possible pregnancy outcomes. However, we promote a future analysis for pregnant women with moderate risk of giving birth to a child with single-gene mutations such as cystic fibrosis or other congenital malformations that undergo noninvasive prenatal diagnosis tests, as they become more accurate and might cause lower pre-diagnosis stress levels.

Dataset Information

Prenatal screening for cystic fibrosis carriers: an economic evaluation.

Publications

Prenatal screening for cystic fibrosis carriers: an economic evaluation.

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