Outcomes and process in genetic counselling

Clinical Genetics

Volumn 50, Issue 6, 1996, Pages 462-469

  Clarke, Angus ^a   Parsons, Evelyn ^a   Williams, Allison ^a  

^a UNIVERSITY HOSPITAL OF WALES   (United Kingdom)

Author keywords

Evaluation; Genetic counselling; Outcomes; Satisfaction

Indexed keywords

ARTICLE; CLINICAL GENETICS; ETHICS; FOLLOW UP; GENETIC COUNSELING; HUMAN; PEER REVIEW; PRIORITY JOURNAL;

EID: 0030467148     PISSN: 00099163     EISSN: None     Source Type: Journal    
DOI: 10.1111/j.1399-0004.1996.tb02713.x     Document Type: Article

References (62)

1. Abramovsky I, Godmilow L, Hirschhorn K, Smith H. Analysis of a follow-up study of genetic counselling. Clin Genet 1980: 17: 1-12.
2. Arnold JR, Winsor EJT. The use of structured scenarios in genetic counselling. Clin Genet 1984: 25: 485-490.
3. Baum FG. Researching public health: behind the qualitative-quantitative methodological debate. Soc Sci Med 1995: 40: 459-468.
4. Beech R, Rona RJ, Swan AV. Wilson OM, Mandalia S. A methodology for simulating the impact of DNA-probe services on the outcomes of pregnancies. Int J Technol Assess Health Care 1992: 8: 539-545.
5. Bekker H, Modell M, Denniss G, Silver A, Mathew C, Bobrow M, Marteau T. Uptake of cystic fibrosis testing in primary care: supply push or demand pull? Br Med J 1993: 306: 1584-1586.
6. Bekker H, Denniss G, Modell M, Bobrow M, Marteau T. The impact of population-based screening for carriers of cystic fibrosis. J Med Genet 1994: 31: 364-368.
7. Brazier JE, Harper R, Jones NMB, O'Cathain A, Thomas KJ, Usherwood T, Westlake L. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. Br Med J 1992: 305: 160-164.
8. Bruster S, Jarman B, Bosanquet N, Weston D, Erens R, Delbanco TL. National survey of hospital patients. Br Med J 1994: 309: 1542-1549.
9. Calnan M. Towards a conceptual framework of lay evaluation of health care. Soc Sci Med 1988: 27: 927-933.
10. Carr-Hill RA. The measurement of patient satisfaction. J Pub Health Med 1992: 14: 236-249.
11. Chadwick RF. What counts as success in genetic counselling? J Med Ethics 1993: 19: 43-46.
12. Clarke A. Genetics, ethics and audit. Lancet 1990: 335: 1145-1147.
13. Clarke A. Is non-directive genetic counselling possible? Lancet 1991: 338: 998-1001.
14. Clarke A. Response to: what counts as success in genetic counselling? J Med Ethics 1993: 19: 47-49.
15. Clarke A. Introduction. In: Clarke A, ed. Genetic counselling: practice and principles. London and New York: Routledge, 1994.
16. Curtis D, Johnson M. Blank CE. An evaluation of reinforcement of genetic counselling on the consultand. Clin Genet 1988: 33: 270-276.
17. Delamothe T. Using outcomes research in clinical practice. Br Med J 1994: 308: 1583-1584.
18. Emery AEH, Raeburn JA, Skinner R, Holloway S, Lewis M. Prospective study of genetic counselling. Br Med J 1979: i: 1253-1256.
19. Evers-Kiebooms G, van den Berghe H. Impact of genetic counselling: a review of published follow-up studies. Clin Genet 1979: 15: 465-474.
20. Famish S. A developing role in genetic counselling. J Med Genet 1988: 25: 392-395.
21. Frets PG, Duivenvoorden HJ, Verhage F, Niermeijer MF, van de Berge SMM, Galjaard H. Factors influencing the reproductive decision after genetic counselling. Am J Med Genet 1990: 35: 496-502.
22. Garratt AM, Ruta DA, Abdalla MI, Buckingham JK, Russell IT. The SF-36 health survey questionnaire: an outcome measure suitable for routine use within the NHS? Br Med J 1993: 306: 1440-1444.
23. Harper PS. Practical genetic counselling, 3rd edn. London: Wright, 1988.
24. Harper PS, Ball DM, Hayden MR. Presymptomatic testing for Huntington's disease: a worldwide survey. J Med Genet 1993: 30: 1020-1022.
25. Hazzard AJ. Measuring outcome in counselling: a brief exploration of the issues. Brit J General Practice 1995: 45: 118-119.
26. Huys J, Evers-Kiebooms G, d'Ydewalle G. Decision making in the context of genetic risk: the use of scenarios. Birth Defects: Original Article Series 1992: 28(1): 17-20.
27. Jedlicka-Kohler I, Gotz M, Eichler I. Utilization of prenatal diagnosis for cystic fibrosis over the past seven years. Pediatrics 1994: 94: 13-16.
28. Jenkins CD. Assessment of outcomes of health intervention. Soc Sci Med 1992: 35: 367-375.
29. Johal S. Quality of life: an evaluation alternative for genetic services. Psychology Update 1995: in press.
30. Kelly TE. Clinical Genetics and Genetic Counselling. Chicago: Year Book, 1986.
31. Kessler S. Psychological aspects of genetic counselling VI. A critical review of the literature dealing with education and reproduction. Am J Med Genet 1989: 34: 340-353.
32. Kessler S. Process Issues in Genetic Counselling. Birth Defects Original Article Series 1992: 28(1): 1-10.
33. Lippman-Hand A, Fraser FC. Genetic counselling: provision and reception of information. Am J Med Genet 1979a: 3: 113-127.
34. Lippman-Hand A, Fraser FC. Genetic counselling: the post-counselling period: I. Patients' perceptions of uncertainty. Am J Med Genet 1979b: 4: 51-71.
35. Loader S, Sutera CJ, Waiden M, Kozyra A, Rowley PT. Prenatal screening for hemoglobinopathies. II. Evaluation of counselling. Am J Hum Genet 1991a: 48: 447-451.
36. Loader S, Sutera CJ, Segelman SG, Kozyra A, Rowley PT. Prenatal hemoglobinopathy screening. IV. Women at risk for a child with a clinically significant hemoglobinopathy. Am J Hum Genet 1991b: 49: 1292-1299.
37. Marteau T. Psychological consequences are unclear. Br Med J 1994: 309: 1429-1430.
38. Mennie M, Compton ME, Gilfillan A, Liston WA, Pullen I, Whyte DA, Brock DJH. Prenatal screening for cystic fibrosis: psychological effects on carriers and their partners. J Med Genet 1993: 30: 543-548.
39. Modell B, Kuliev AM. A scientific basis for cost-benefit analysis of genetics services. Trends Genet 1993: 9: 46-52.
40. Morris J, Lawrence KM. The effectiveness of genetic counselling for neural-tube malformations. In: Stark G, ed. Studies in hydrocephalus and spina biflda. Dev Med and Child Neurol 1976: 18: suppl 37: 157-163.
41. Mushlin AI, Mooney C, Grow V Phelps CE. The value of diagnostic information to patients with suspected multiple sclerosis. Arch Neurol 1994: 51: 67-72.
42. Oetting LA, Steele MW. A controlled retrospective follow-up study of the impact of genetic counselling on parental reproduction following the birth of a Down syndrome child. Clin Genet 1982: 21: 7-13.
43. Parsons EP, Atkinson PA. Lay construction of genetic risk. Sociology of Health and Illness 1992: 14: 437-455.
44. Parsons EP, Atkinson P Genetic risk and reproduction. Sociological Review 1993: 41: 679-706.
45. Pearn JH. Patients' subjective interpretation of risks offered in genetic counselling. J Med Genet 1973: 10: 129-134.
46. Phin N. Can economics be applied to prenatal screening? Discussion Paper 74, Centre for Health Economics, University of York, 1990.
47. Sheldon TA, Borowitz M. Changing the measure of quality in the NHS: from purchasing activity to purchasing protocols. Quality in Health Care 1993: 2: 149-150.
48. Shiloh S, Sagi M. Effect of framing on the perception of genetic recurrence risks. Am J Med Genet 1989: 33: 130-135.
49. Shiloh S, Avdor O, Goodman RM. Satisfaction with genetic counselling: dimensions and measurement Am J Med Genet 1990: 37: 522-529.
50. Somer M, Mustonen H, Norio R. Evaluation of genetic counselling: recall of information, post-counselling reproduction, and attitude of the counsellees. Clin Genet 1988: 34: 352-365.
51. Sorenson JR, Swazey JP, Scotch NA. Reproductive pasts, reproductive futures. Genetic counselling and its effectiveness. Birth Defects: Original Article Series 1981a: 17(4): Chapt 5: Effective genetic counselling: more informed clients.
52. Sorenson JR, Swazey JP, Scotch NA. Reproductive pasts, reproductive futures. Genetic counselling and its effectiveness. Birth Defects: Original Article Series 1981b: (4): Chapt 4: Effective genetic counselling: discussing client questions and concerns.
53. Sorenson JR, Scotch NA, Swazey JP, Wertz DC, Heeren TC. Reproductive plans of genetic counselling clients not eligible for prenatal diagnosis. Am J Med Genet 1987: 28: 345-352.
54. Spiegelhalter DJ, Gore SM, Fitzpatrick R, Fletcher AE, Jones DR, Cox DJ. Quality of life measures in health care. III. Resource allocation. Br Med J 1992: 305: 1205-1209.
55. Tyler A, Ball D, Craufurd D. Presymptomatic testing for Huntington's disease in the United Kingdom. Br Med J 1992: 304: 1593-1596.
56. Wertz DC, Sorenson JR. Client reactions to genetic counselling: self-reports of influence. Clin Genet 1986a: 30: 494-502.
57. Wertz DC, Sorenson JR, Heeren TC. Genetic counselling and reproductive uncertainty. Am J Med Genet 1984: 18: 79-88.
58. Wertz DC, Sorenson JR, Heeren TC. Clients' interpretation of risks provided in genetic counselling. Am J Hum Genet 1986b: 39: 253-264.
59. Wertz DC, Sorenson JR, Heeren TC. Communication in health professional-lay encounters: how often does each party know what the other wants to discuss? In: Ruben BD, ed. Information and behaviour. Vol. 2. New Brunswick and Oxford: Transaction Books, 1988a: Chapt 17: 329-342.
60. Wertz DC, Sorenson JR, Heeren TC. "Can't get no (dis)satisfaction". Professional satisfaction with professional-client encounters. Work and Occupations 1988b: 15 (1): 36-54.
61. Williams W. Patient satisfaction: a valid concept? Soc Sci Med 1994: 38: 509-516.
62. Zare N, Sorenson JR, Heeren T. Sex of provider as a variable in effective genetic counselling. Soc Sci Med 1984: 19: 671-675.