Abstract
A questionnaire was given to 180 patients in an antenatal clinic, who were eligible to enter a pilot trial of cystic fibrosis (CF) carrier testing, seeking their views on the information leaflet inviting them to participate; 161 patients (89%) entered the trial and 145 patients (81%) responded to the questionnaire, including 10 who did not enter the trial. Ninety-six percent of these found the leaflet easy to understand, and 97% of those partners who read the leaflet also found it easy to understand. Fifteen percent of patients thought the leaflet should give additional information. Most (92%) had heard of CF before reading the leaflet, television being the most common source of information. Although avoiding the birth of a child with CF was the reason most patients gave for wishing to be screened, almost as many were interested to know their carrier status. The decision to accept or decline testing was taken in conjunction with their partner by 63% of women. Of those who were screened, 59% stated that taking the test made them feel reassured, while 38% felt slightly apprehensive. It was concluded that, with a number of minor amendments, the leaflet met the specific needs of the target patient population.
Full text
PDF
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Bhopal R. S., Gilmour W. H., Fallon C. W., Bhopal J. S., Hamilton I. Evaluation of a practice information leaflet. Fam Pract. 1990 Jun;7(2):132–137. doi: 10.1093/fampra/7.2.132. [DOI] [PubMed] [Google Scholar]
- Brock D. Population screening for cystic fibrosis. Am J Hum Genet. 1990 Jul;47(1):164–165. [PMC free article] [PubMed] [Google Scholar]
- Clow C. L., Scriver C. R. Knowledge about and attitudes toward genetic screening among high-school students: the Tay-Sachs experience. Pediatrics. 1977 Jan;59(1):86–90. [PubMed] [Google Scholar]
- Cobb S. Presidential Address-1976. Social support as a moderator of life stress. Psychosom Med. 1976 Sep-Oct;38(5):300–314. doi: 10.1097/00006842-197609000-00003. [DOI] [PubMed] [Google Scholar]
- Faden R. R., Chwalow A. J., Orel-Crosby E., Holtzman N. A., Chase G. A., Leonard C. O. What participants understand about a maternal serum alpha-fetoprotein screening program. Am J Public Health. 1985 Dec;75(12):1381–1384. doi: 10.2105/ajph.75.12.1381. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Farrell-Miller P., Gentry P. How effective are your patient education materials? Guidelines for developing and evaluating written educational materials. Diabetes Educ. 1989 Sep-Oct;15(5):418–422. doi: 10.1177/014572178901500505. [DOI] [PubMed] [Google Scholar]
- Field P. A. Effectiveness and efficacy of antenatal care. Midwifery. 1990 Dec;6(4):215–223. doi: 10.1016/s0266-6138(05)80117-2. [DOI] [PubMed] [Google Scholar]
- Houston M. J., Field P. A. Practices and policies in the initiation of breastfeeding. J Obstet Gynecol Neonatal Nurs. 1988 Nov-Dec;17(6):418–424. doi: 10.1111/j.1552-6909.1988.tb00468.x. [DOI] [PubMed] [Google Scholar]
- Marteau T. M., Johnston M., Plenicar M., Shaw R. W., Slack J. Development of a self-administered questionnaire to measure women's knowledge of prenatal screening and diagnostic tests. J Psychosom Res. 1988;32(4-5):403–408. doi: 10.1016/0022-3999(88)90023-2. [DOI] [PubMed] [Google Scholar]
- Merrill C. R., Knox A. M. Patient attitudes to body computed tomography: use of an information leaflet. Clin Radiol. 1986 Nov;37(6):537–538. doi: 10.1016/s0009-9260(86)80007-1. [DOI] [PubMed] [Google Scholar]
- Shrimpton A. E., McIntosh I., Brock D. J. The incidence of different cystic fibrosis mutations in the Scottish population: effects on prenatal diagnosis and genetic counselling. J Med Genet. 1991 May;28(5):317–321. doi: 10.1136/jmg.28.5.317. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Wilfond B. S., Fost N. The cystic fibrosis gene: medical and social implications for heterozygote detection. JAMA. 1990 May 23;263(20):2777–2783. [PubMed] [Google Scholar]