title: Assessment of psychosocial outcomes in genetic counseling research: an overview of available measurement scales.
abstract: The aim of the present paper was to describe and evaluate many of the measurement scales currently used in genetic counseling outcomes research. A team of three researchers reviewed the available literature and selected a variety of validated instruments suitable for measurement of genetic counseling outcomes. There are numerous scales to assess each of the following outcomes among counselees: satisfaction with genetic counseling; knowledge; decision-making; psychological adjustment; coping; perceived personal control; perceptions of disease risk; and family communication about genetic risk. However, the strengths and limitations inherent to each instrument warrant careful consideration prior to implementation. In the genetic counseling context, scale selection should be undertaken with thought directed towards the characteristics of the research sample (e.g. levels of literacy, culture, medical condition), the practicalities of the research setting (e.g. available funding and resources, time restrictions, researcher expertise), the purpose of the research (i.e. the specific aspect of the genetic counseling experience to be studied), and the science underlying the scale (e.g. theoretical framework, psychometric properties).
authors: Psychosocial Research Group, Department of Medical Oncology, Prince of Wales Hospital, Level 3 Dickinson Building, 2031, Randwick, Australia. N.Kasparian@unsw.edu.au
authors: Nadine A
authors: NA
authors: Kasparian
authors: Claire E
authors: CE
authors: Wakefield
authors: Bettina
authors: B
authors: Meiser
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics; D005260:Female; D005817:Genetic Counseling; D030342:Genetic Diseases, Inborn / Q000523:psychology; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D009369:Neoplasms / Q000453:epidemiology / Q000235:genetics; D017060:Patient Satisfaction; D010465:Perception; D012944:Social Support; D011795:Surveys and Questionnaires; D016896:Treatment Outcome
references: J Behav Med. 1998 Dec;21(6):565-79
references: 9891255
references: Br J Clin Psychol. 1986 May;25 ( Pt 2):143-4
references: 3730650
references: J Natl Cancer Inst. 1997 Jan 15;89(2):148-57
references: 8998184
references: Clin Genet. 1992 Apr;41(4):189-96
references: 1576756
references: Genet Med. 2006 Apr;8(4):226-33
references: 16617243
references: Fam Pract Res J. 1993 Mar;13(1):15-24
references: 8484338
references: J Pers Soc Psychol. 1992 Dec;63(6):989-1003
references: 1460565
references: Patient Educ Couns. 2007 Jan;65(1):58-68
references: 16872788
references: Am J Psychiatry. 1980 Sep;137(9):1081-4
references: 7425160
references: Br J Cancer. 2002 Jan 21;86(2):233-8
references: 11870512
references: Am J Hum Genet. 1997 Apr;60(4):935-47
references: 9106541
references: J Med Genet. 1998 Sep;35(9):731-8
references: 9733031
references: Am J Med Genet. 1986 Sep;25(1):143-8
references: 3799713
references: J Genet Couns. 2004 Aug;13(4):293-304
references: 19736695
references: Am J Med Genet A. 2005 Mar 1;133A(2):165-9
references: 15633195
references: Br J Cancer. 1996 Aug;74(3):482-7
references: 8695370
references: J Genet Couns. 2005 Apr;14(2):133-40
references: 15959644
references: Fam Cancer. 2004;3(1):21-8
references: 15131402
references: Br J Cancer. 2002 Aug 27;87(5):502-8
references: 12189544
references: Br J Cancer. 1999 Feb;79(3-4):501-8
references: 10027320
references: Am J Med Genet. 1991 Sep 1;40(3):298-303
references: 1951432
references: Can Fam Physician. 2003 Jan;49:56-63
references: 12602843
references: Clin Genet. 2007 Jan;71(1):35-42
references: 17204044
references: Eur J Cancer. 2006 May;42(7):871-81
references: 16563745
references: Med Decis Making. 2006 Jul-Aug;26(4):360-72
references: 16855125
references: J Behav Med. 2003 Apr;26(2):105-17
references: 12776381
references: J Clin Oncol. 2003 Oct 15;21(20):3867-74
references: 14551306
references: Psychooncology. 2004 May;13(5):335-45
references: 15133774
references: J Med Ethics. 2006 Mar;32(3):153-6
references: 16507659
references: J Genet Couns. 2006 Apr;15(2):77-83
references: 16761103
references: J Med Genet. 2002 Sep;39(9):689-94
references: 12205115
references: Soc Sci Med. 1998 Dec;47(11):1653-8
references: 9877335
references: Community Genet. 2004;7(1):25-32
references: 15475668
references: J Pers Soc Psychol. 1987 Feb;52(2):345-53
references: 3559895
references: Clin Genet. 2004 May;65(5):358-67
references: 15099342
references: Am J Med Genet. 1997 Jul 11;71(1):63-71
references: 9215771
references: Breast Cancer Res Treat. 1999 Jan;53(1):69-75
references: 10206074
references: Health Psychol. 1985;4(3):219-47
references: 4029106
references: J Natl Cancer Inst. 1992 Jan 1;84(1):24-30
references: 1738170
references: Health Psychol. 2002 Nov;21(6):564-72
references: 12433008
references: Health Psychol. 2001 May;20(3):217-22
references: 11403219
references: Patient Educ Couns. 2002 Sep;48(1):87-91
references: 12220754
references: J Pers Soc Psychol. 1983 Jul;45(1):223-36
references: 6886967
references: J Pers Soc Psychol. 1989 Apr;56(4):640-8
references: 2709311
references: Am J Med Genet. 2000 Aug 14;93(4):257-63
references: 10946349
references: J Genet Couns. 2004 Oct;13(5):369-85
references: 15604637
references: J Genet Couns. 1996 Sep;5(3):123-37
references: 24234671
references: Am J Med Genet A. 2003 Jan 1;116A(1):11-9
references: 12476445
references: J Genet Couns. 2005 Oct;14(5):365-76
references: 16195943
references: J Clin Oncol. 2003 Nov 1;21(21):4034-41
references: 14581427
references: Int J Behav Med. 1997;4(1):92-100
references: 16250744
references: Breast Cancer Res Treat. 2008 Jan;107(2):289-301
references: 17333332
references: Patient Educ Couns. 1997 Sep-Oct;32(1-2):93-100
references: 9355576
references: Am J Med Genet. 2000 Mar 6;91(1):1-7
references: 10751081
references: Med Decis Making. 2003 Jul-Aug;23(4):281-92
references: 12926578
references: Med Decis Making. 1995 Jan-Mar;15(1):25-30
references: 7898294
references: Med Decis Making. 1996 Jan-Mar;16(1):58-64
references: 8717600
references: J Genet Couns. 2005 Jun;14(3):197-206
references: 15959651
references: J Genet Couns. 1995 Jun;4(2):97-113
references: 24234308
references: Patient Educ Couns. 2002 Jun;47(2):145-53
references: 12191538
references: Clin Genet. 2000 Dec;58(6):460-8
references: 11149615
references: Clin Genet. 2005 Apr;67(4):303-13
references: 15733266
references: J Genet Couns. 2007 Feb;16(1):85-96
references: 17295054
references: J Womens Health (Larchmt). 2006 Sep;15(7):843-56
references: 16999640
references: J Clin Epidemiol. 2002 Jul;55(7):665-75
references: 12160914
references: J Natl Cancer Inst. 2000 Aug 16;92(16):1345-51
references: 10944557
references: Cancer. 2001 Aug 15;92(4):932-40
references: 11550168
references: Community Genet. 2004;7(1):15-24
references: 15475667
references: J Nurs Scholarsh. 2005;37(1):18-24
references: 15813582
references: Genet Med. 2004 Nov-Dec;6(6):503-9
references: 15545746
references: JAMA. 2004 Jul 28;292(4):442-52
references: 15280342
references: J Pers Soc Psychol. 1988 Jan;54(1):142-8
references: 3346803
references: J Genet Couns. 1999 Aug;8(4):217-33
references: 26142262
references: Acta Psychiatr Scand. 1983 Jun;67(6):361-70
references: 6880820
references: J Pers Soc Psychol. 1993 Feb;64(2):293-304
references: 8433275
references: J Nurs Scholarsh. 2005;37(3):203-8
references: 16235859
references: Psychosom Med. 1979 May;41(3):209-18
references: 472086
references: Cancer. 1995 Jul 15;76(2):167-77
references: 8625088
references: J Obstet Gynaecol. 2002 May;22(3):246-55
references: 12521493
references: J Genet Couns. 1997 Mar;6(1):45-60
references: 26141962
references: Am J Med Genet. 1990 Apr;35(4):510-5
references: 2333880
references: Am J Med Genet A. 2003 Jul 15;120A(2):199-208
references: 12833400
references: Patient Educ Couns. 2001 Apr;43(1):73-84
references: 11311841
references: J Pers Soc Psychol. 1986 Aug;51(2):389-95
references: 3746619
references: Am J Med Genet A. 2004 Nov 15;131(1):36-41
references: 15389697
references: J Genet Couns. 2001 Aug;10(4):311-29
references: 26141157
references: Prev Med. 2001 Aug;33(2 Pt 1):128-36
references: 11493046
references: Patient Educ Couns. 1997 Sep-Oct;32(1-2):129-39
references: 9355580
references: Clin Genet. 2005 Jun;67(6):481-91
references: 15857415
references: Med Decis Making. 2000 Jan-Mar;20(1):51-61
references: 10638537
references: J Health Commun. 2005;10 Suppl 1:119-36
references: 16377604
references: Med Decis Making. 1998 Jul-Sep;18(3):295-303
references: 9679994
references: Br J Clin Psychol. 1992 Sep;31 ( Pt 3):301-6
references: 1393159
references: Patient Educ Couns. 2001 Mar;42(3):213-24
references: 11164320
references: Eur J Hum Genet. 2003 Jan;11(1):30-8
references: 12529703
references: Am J Med Genet. 2001 Jan 1;98(1):15-24
references: 11426450
references: J Natl Cancer Inst. 1993 Jul 7;85(13):1074-80
references: 8515494
references: Health Psychol. 1997 Jan;16(1):87-99
references: 9028818
references: Psychol Rep. 1999 Dec;85(3 Pt 2):1238-43
references: 10710979
references: Patient Educ Couns. 2005 Feb;56(2):182-91
references: 15653247
references: Health Psychol. 1997 May;16(3):256-62
references: 9152704
references: J Med Genet. 1996 Sep;33(9):731-6
references: 8880571
references: Aust N Z J Obstet Gynaecol. 2003 Apr;43(2):134-8
references: 14712969
references: Genet Test. 2003 Fall;7(3):225-33
references: 14658447
references: Nurs Res. 1993 Jan-Feb;42(1):22-8
references: 8424063
references: J Pers Soc Psychol. 1994 Dec;67(6):1063-78
references: 7815302
references: BMC Public Health. 2006 Apr 13;6:96
references: 16611368
references: J Genet Couns. 2007 Apr;16(2):211-22
references: 17279329
references: J Health Soc Behav. 1976 Mar;17(1):3-11
references: 1270783
references: J Med Genet. 2002 Sep;39(9):697-703
references: 12205117
references: Am J Med Genet. 2000 Sep 4;94(1):13-8
references: 10982476
references: Ann Behav Med. 1997 Fall;19(4):362-9
references: 9706363
references: Genet Test. 2002 Winter;6(4):291-302
references: 12537653
references: Am J Med Genet A. 2005 Jul 15;136(2):122-7
references: 15940688
references: Psychosomatics. 1997 May-Jun;38(3):253-61
references: 9136254
references: Patient Educ Couns. 2005 Jun;57(3):286-93
references: 15893210
references: Res Nurs Health. 1990 Aug;13(4):227-36
references: 2197679
references: Am J Epidemiol. 1977 Sep;106(3):203-14
references: 900119
references: Health Psychol. 1996 Nov;15(6):423-9
references: 8973921
references: J Pers Soc Psychol. 1989 Feb;56(2):267-83
references: 2926629
references: Aust N Z J Obstet Gynaecol. 2006 Oct;46(5):433-9
references: 16953859
references: J Genet Couns. 2004 Oct;13(5):425-45
references: 15604640
references: J Psychosom Res. 1988;32(4-5):403-8
references: 3070012
references: Br J Obstet Gynaecol. 1991 Mar;98(3):282-6
references: 2021567
references: J Psychosom Res. 2002 Feb;52(2):69-77
references: 11832252
references: Cancer Epidemiol Biomarkers Prev. 2002 Jun;11(6):521-8
references: 12050092
references: Behav Med. 1990 Spring;16(1):15-22
references: 2322653
references: Prenat Diagn. 2005 Aug;25(8):656-64
references: 16049990
references: Am J Med Genet. 1990 Dec;37(4):522-9
references: 2260600
references: Psychosom Med. 1997 May-Jun;59(3):269-79
references: 9178338
references: Br J Cancer. 1999 Feb;79(5-6):868-74
references: 10070883
references: Am J Med Genet. 1995 Jul 3;57(3):385-92
references: 7677139
references: Am J Med Genet C Semin Med Genet. 2003 May 15;119C(1):78-86
references: 12704641
references: J Nurs Scholarsh. 2001;33(4):369-74
references: 11775308
references: Fam Cancer. 2005;4(2):195-206
references: 15951974
references: Psychol Med. 1988 Nov;18(4):1007-19
references: 3078045
references: Ann Behav Med. 2000 Winter;22(1):53-9
references: 10892528
references: Am J Med Genet. 1999 Jan 1;82(1):53-9
references: 9916844
references: Am J Public Health. 2001 Apr;91(4):639-41
references: 11291381
references: Clin Genet. 1996 Dec;50(6):462-9
references: 9147874
references: J Consult Clin Psychol. 1982 Jun;50(3):407-14
references: 7096742
references: J Behav Med. 2002 Aug;25(4):373-94
references: 12136498
references: J Genet Couns. 2005 Dec;14 (6):453-63
references: 16388326
references: Prenat Diagn. 1996 May;16(5):425-30
references: 8844000
references: Am J Med Genet. 2001 Fall;106(3):191-8
references: 11778979
references: Br J Health Psychol. 2002 Nov;7(Part 4):449-462
references: 12614496
references: Health Educ Behav. 2005 Oct;32(5):654-67
references: 16148211
references: Clin Genet. 2005 Jun;67(6):492-502
references: 15857416
references: Am J Med Genet. 2002 Jan 15;107(2):143-50
references: 11807889
references: Cancer Epidemiol Biomarkers Prev. 2003 Apr;12(4):304-13
references: 12692104
references: Neuroepidemiology. 2001 Oct;20(4):262-7
references: 11684903
references: Clin Genet. 2001 Nov;60(5):323-30
references: 11903329