Familial hypercholesterolemia: Ethical, practical and psychological problems from the perspective of patients

Patient Education and Counseling

Volumn 57, Issue 2, 2005, Pages 162-167

  Ågård, Anders ^a,b   Bolmsjö, Ingrid Ågren ^b   Hermerén, Göran ^b   Wahlstöm, Jan ^a  

^a SAHLGRENSKA UNIVERSITY HOSPITAL   (Sweden)

^b LUND UNIVERSITY   (Sweden)

Author keywords

Ethics; Familial hypercholesterolemia; Genetic disorders; Management; Qualitative interview

Indexed keywords

ADULT; AGED; ARTICLE; CLINICAL ARTICLE; EMOTIONAL STRESS; ETHICS; FAMILIAL HYPERCHOLESTEROLEMIA; FEMALE; GENETICS; GUILT; HETEROZYGOSITY; HUMAN; INTERVIEW; MALE; PATIENT ATTITUDE; PATIENT CARE; PATIENT EDUCATION; PHYSIOLOGY; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; QUALITY OF LIFE; SWEDEN;

ADAPTATION, PSYCHOLOGICAL; ADULT; AFFECT; AGED; ATTITUDE TO HEALTH; COST OF ILLNESS; FAMILY; FEAR; FEMALE; GUILT; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HETEROZYGOTE DETECTION; HOSPITALS, UNIVERSITY; HUMANS; HYPERLIPOPROTEINEMIA TYPE II; LIFE STYLE; MALE; MIDDLE AGED; NURSING METHODOLOGY RESEARCH; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUESTIONNAIRES; STRESS, PSYCHOLOGICAL; SWEDEN; TRUTH DISCLOSURE;

EID: 19444387758     PISSN: 07383991     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.pec.2004.05.010     Document Type: Article

References (35)

1. A.G. Motulsky Genetic aspects of familial hypercholesterolemia and its diagnosis Arteriosclerosis 9 1989 S13 S17
2. A. Yamamoto, T. Kimaya, T. Yamamura, S. Yokoyama, Y. Horiguchi, T. Funahashi, T. Kawaguchi, A. Miyake, S. Beppu, and K. Ishikawa Clinical features of familial hypercholesterolemia Arteriosclerosis 9 1989 SI66 SI74
3. H. Mabuch, J. Koizumi, M. Shimuzi, and R. Takeda Development of coronary heart disease in familial hypercholesterolemia Circulation 79 1989 225 232
4. Scientific Steering Committee on the behalf of the Simon Broome Register Group Risk of fatal coronary heart disease in familial hypercholesterolemia BMJ 303 1991 893 896
5. D. Marks, D. Wonderling, Thorogood, H. Lambert, and S.E. Humphries HAW Neil. Health Technol. Assess. 4 2000 1 123
6. J.P. Kane, M.J. Malloy, T.A. Ports, N.R. Philllips, J.C. Diehl, and R.J. Havel Regression of coronary atherosclerosis during treatment of familial hypercholesterolemia with combined drug regimens JAMA 264 1990 3007 3012
7. J. Shepard, S.M. Cobbe, I. Ford, C.G. Isles, A.R. Lorimer, P.W. MacFarlane, J.H. McKillop, C.J. Packard for the West of Scotland Coronary Prevention Study Group Prevention of coronary heart disease with pravastatin in men with hypercholesterolemia N. Engl. J. Med. 333 1995 1301 1307
8. Scientific Steering Committee on the behalf of the Simon Broome Register Group Mortality in treated heterozygous familial hypercholesterolemia: implications for clinical management Atherosclerosis 142 1999 105 112
9. T.J. Smilde, S. van Wissen, H. Wollersheim, M.D. Tri, J.J. Kastelein, and A.F. Stalenhoef Effect of aggressive versus conventional lipid lowering on atherosclerotic progression in familial hypercholesterolaemia (ASAP): a prospective, double-blind randomised trial Lancet 357 2001 577 578
10. P.V.I. Koivisto, U.-M. Koivisto, T.A. Miettinen, and K. Kontula Diagnosis of familial hypercholesterolemia: DNA analysis complements clinical examination and analysis of serum lipid levels Arterioscler. Thromb. 12 1992 584 592
11. R.R. Williams, S.C. Hunt, M.C. Schmacher, R.A. Hegele, M.F. Leppert, E.H. Ludwig, and P.N. Hopkins Diagnosing familial hypercholesterolemia using new practical criteria validated by molecular genetics Am. J. Cardiol. 72 1993 171 176
12. S.E. Humphries, D. Galton, and P. Nicholls Genetic testing for familial hypercholesterolemia: practical and ethical issues Q. J. Med. 90 1997 169 181
13. D. Wood, G. De Backer, O. Faergeman, I. Graham, G. Mancia, K. Pyörälä Members of the Task Force Prevention of coronary heart disease in clinical practice: recommendations of the Second Joint Task Force of European and other Societies on coronary prevention Atherosclerosis 140 1998 199 270
14. R.R. Williams, C. Schumacher, G.K. Barlow, S.C. Hunt, J.L. Ware, M. Pratt, and Latham Documented need for more effective treatment of familial hypercholesterolaemia according to data from 502 heterozygous in Utah. Am. J. Cardiol. 72 1992 18D 24D
15. M.A. Umans-Eckenhausen, J.C. Defesche, E.J. Sijbrands, R.L. Scheerder, and J.J. Kastelein Review of first 5 years of screening for familial hypercholesterolemia in the Netherlands Lancet 357 2001 165 168
16. D. Bhatnagar, J. Morgan, S. Siddiq, M.I. Mackness, J.P. Miller, and P.N. Durrington Outcome of case finding relatives of patients with known heterozygous familial hypercholesterolemia BMJ 321 2000 1497 1500
17. Summary of the second report of the National Cholesterol Educational Program (NCEP) expert panel on detection, evaluation and treatment of high blood cholesterol in adults (adult treatment panel II) JAMA 269 1993 3015 3023
18. M.C. van Maarle, M.E. Stouthard, P.J. Marang-van de Mheen, N.S. Klazinga, and G.J. Bonsel How disturbing is it to be approached for a genetic cascade screening programme for familial hypercholesterolemia? Psychological impact and screenes' views Commun. Genet. 4 2002 244 252
19. Andersen LK, Jensen HK, Juul S, Faergeman O. Patients' attitudes toward detection of heterozygous familial hypercholesterolemia. Arch Intern Med 157:553-60.
20. A.P. Froese, V. Rose, and M. Allen Emotional implication of primary familial hypercholesterolemia in childhood and adolescence Pediatrics 65 1980 469 742
21. S. Tomstad Familial hypercholesterolemia: a pilot study of parents' and children's concerns Acta Paediatr. 85 1996 1307 1313
22. D. Gaudet, C. Gagné, P. Perron, P. Couture, and S. Tonstad Ethical issues in molecular screening for heterozygous familial hypercholesterolemia: the complexity of dealing with genetic susceptibility to coronary artery disease Commun. Genet. 2 1999 2 8
23. D.E. Bild, R.R. Williams, B. Brewer, A. Herd, T.A. Pearson, and E. Stein Identification and management of heterozygous familial hypercholesterolemia: summary and recommendations from a NHLBI workshop Am. J. Cardiol. 73 1993 1D 5D
24. G. Hermerén The right to know and not to know Who owns our genes? Proceedings of an International Conference 1999 Tallin, Estonia Copenhagen, Nord 2000 135 157 (organised by the Nordic Committee on Bioethics)
25. S. Kvale InterViews. An introduction to qualitative research writing 1996 Sage Publication Thousand Oaks
26. P. Wimpenny, and J. Gass Interviewing in phenomenology and grounded theory: is there a difference? J. Adv. Nurs. 31 2000 1485 1492
27. R.S. Barbour Checklist for improving rigour in qualitative research: a case of the tail wagging the dog? BMJ 322 2001 1115 1117
28. J. Green Commentary: grounded theory and the constant comparative method BMJ 316 1998 1064 1065
29. D.J. Hyman, J.A. Flora, K.D. Reynolds, M.B. Johannson, and J.W. Farquahar The impact of public cholesterol screening on diet, general well-being, physician referral Am. J. Prev. Med. 7 1991 268 272
30. T. Moum Screening for disease: detection and prevention: some comments and future perspectives R.T. Croyle Psychological effects of screening for disease prevention and detection 1995 Oxford University Press New York 203 213
31. T.L. Beauchamp, and J.F. Childress Principles of biomedical ethics 5th ed. 2001 Oxford University Press Oxford, New York [p. 41-3]
32. P.R. Reilly Ethical and legal issues in genetic testing to predict risk of heart disease Am. Heart J. 140 2000 S6 S10
33. S. Tomstad Screening for familial hypercholesterolemia in relatives Lancet 346 1995 1438
34. K.A. Quaid Psychological and ethical considerations in screening for disease Am. J. Cardiol. 72 1993 64D 67D
35. A.S. Brett Psychologic effects of the diagnosis and treatment of hypercholesterolemia: lessons from case studies Am. J. Med. 91 1991 642 646