Abstract
Despite numerous individual studies of psychological factors (depression, anxiety, distress) related to genetic testing for inherited cancer syndromes (CGT), there has been no systematic review of the psychological factors are measured among individuals at increased risk for hereditary breast, ovarian, or colon cancer. Our review provides an analysis of psychological factors in studies of CGT and discusses the instruments most commonly used to measure them. We performed a literature search using three major OVID databases from 1993 to January 2003. In the 19 studies that met our inclusion criteria, the most commonly assessed psychological factors were distress, anxiety, and depression. These factors were most often measured by the impact of event scale (IES), the state-trait anxiety inventory (STAI), and the Centers for Epidemiologic Studies and Depression scale (CES-D), respectively. Our results show deficits in the existing body of literature on psychological factors associated with CGT including limited documentation of psychometrics and variability in instrumentation.
Article PDF
Similar content being viewed by others
Avoid common mistakes on your manuscript.
References
Y Miki J Swensen D Shattuck-Eidens et al. (1994) ArticleTitleA strong candidate for the breast and ovarian cancer susceptibility gene BRCA1 Science 266 66–71 Occurrence Handle1:CAS:528:DyaK2MXhtF2ns70%3D Occurrence Handle7545954
R Wooster G Bignell J Lancaster et al. (1995) ArticleTitleIdentification of the breast cancer susceptibility gene BRCA2 Nature 378 789–92 Occurrence Handle10.1038/378789a0 Occurrence Handle1:CAS:528:DyaK28XltFWi Occurrence Handle8524414
PN. Tonin (2000) ArticleTitleGenes implicated in hereditary breast cancer syndromes Semin Surg Oncol 18 281–6 Occurrence Handle10.1002/(SICI)1098-2388(200006)18:4<281::AID-SSU2>3.0.CO;2-Q Occurrence Handle1:STN:280:DC%2BD3c3ms1CksA%3D%3D Occurrence Handle10805949
RF. Carter (2001) ArticleTitleBRCA1, BRCA2 and breast cancer: a concise clinical review Clin Invest Med 24 147–57 Occurrence Handle1:CAS:528:DC%2BD3MXltFWku7k%3D Occurrence Handle11437066
HT Lynch A. Chapelle Particlede la (1999) ArticleTitleGenetic susceptibility to non-polyposis colorectal cancer J Med Genet 36 801–18 Occurrence Handle1:STN:280:DC%2BD3c%2FhtlSnuw%3D%3D Occurrence Handle10544223
S Winawer R Fletcher D Rex et al. (2003) ArticleTitleColorectal cancer screening and surveillance: clinical guidelines and rationale-update based on new evidence Gastroenterology 124 544–60 Occurrence Handle10.1053/gast.2003.50044 Occurrence Handle12557158
DJ Bowen AF Patenaude SW Vernon (1999) ArticleTitlePsychosocial issues in cancer genetics: from the laboratory to the public Cancer Epidemiol Biomarkers Prev 8 326–8 Occurrence Handle1:STN:280:DyaK1M3isVSnsQ%3D%3D Occurrence Handle10207636
JR Botkin RT Croyle KR Smith et al. (1996) ArticleTitleA model protocol for evaluating the behavioral and psychosocial effects of BRCA1 testing J Natl Cancer Inst 88 872–82 Occurrence Handle1:STN:280:BymB28vpvV0%3D Occurrence Handle8656439
M Broadstock S Michie T Marteau (2000) ArticleTitlePsychological consequences of predictive genetic testing: a systematic review Eur J Hum Genet 8 731–8 Occurrence Handle10.1038/sj.ejhg.5200532 Occurrence Handle1:STN:280:DC%2BD3cvovVKisw%3D%3D Occurrence Handle11039571
JC Coyne NR Benazon CG Gaba et al. (2000) ArticleTitleDistress and psychiatric morbidity among women from high-risk breast and ovarian cancer families J Consult Clin Psychol 68 864–74 Occurrence Handle10.1037//0022-006X.68.5.864 Occurrence Handle1:STN:280:DC%2BD3crhtFOitQ%3D%3D Occurrence Handle11068972
C Lerman RT Croyle KP Tercyak et al. (2002) ArticleTitleGenetic testing: Psychological aspects and implications J Consult Clin Psychol 70 784–97 Occurrence Handle10.1037//0022-006X.70.3.784 Occurrence Handle12090383
KP Tercyak C Lerman BN Peshkin et al. (2001) ArticleTitleEffects of coping style and BRCA1 and BRCA2 test results on anxiety among women participating in genetic counseling and testing for breast and ovarian cancer risk Health Psychol 20 217–22 Occurrence Handle10.1037//0278-6133.20.3.217 Occurrence Handle1:STN:280:DC%2BD3MzjsFyjsw%3D%3D Occurrence Handle11403219
ME Wood L Mullineaux AK Rahm et al. (2000) ArticleTitleImpact of BRCA1 testing on women with cancer: a pilot study Genet Test 4 265–72 Occurrence Handle10.1089/10906570050501489 Occurrence Handle1:STN:280:DC%2BD3M%2FpsFOgug%3D%3D Occurrence Handle11142757
AM Codori GM Petersen DL Miglioretti et al. (1999) ArticleTitleAttitudes toward colon cancer gene testing: factors predicting test uptake Cancer Epidemiol Biomarkers Prev 8 345–51 Occurrence Handle1:STN:280:DyaK1M3isVSntA%3D%3D Occurrence Handle10207639
MJ Esplen L Madlensky K Butler et al. (2001) ArticleTitleMotivations and psychosocial impact of genetic testing for HNPCC Am J Med Genet 103 9–15 Occurrence Handle10.1002/ajmg.1493 Occurrence Handle1:STN:280:DC%2BD3MrhtlKnuw%3D%3D Occurrence Handle11562928
C Lerman C Hughes BJ Trock et al. (1999) ArticleTitleGenetic testing in families with hereditary nonpolyposis colon cancer JAMA 281 1618–22 Occurrence Handle10.1001/jama.281.17.1618 Occurrence Handle1:STN:280:DyaK1M3kvFagtg%3D%3D Occurrence Handle10235155
SW Vernon ER Gritz SK Peterson et al. (1997) ArticleTitleCorrelates of psychologic distress in colorectal cancer patients undergoing genetic testing for hereditary colon cancer Health Psychol 16 73–86 Occurrence Handle10.1037//0278-6133.16.1.73 Occurrence Handle9028817
BB Biesecker N Ishibe DW Hadley et al. (2000) ArticleTitlePsychosocial factors predicting BRCA1/BRCA2 testing decisions in members of hereditary breast and ovarian cancer families Am J Med Genet 93 257–63 Occurrence Handle10.1002/1096-8628(20000814)93:4<257::AID-AJMG1>3.0.CO;2-8 Occurrence Handle1:STN:280:DC%2BD3M3osVehtQ%3D%3D Occurrence Handle10946349
V Bonadona P Saltel F Desseigne et al. (2002) ArticleTitleCancer patients who experienced diagnostic genetic testing for cancer susceptibility: Reactions and behavior after the disclosure of a positive test result Cancer Epidemiol Biomarkers Prev 11 97–104 Occurrence Handle11815406
M Broadstock S Michie J Gray et al. (2000) ArticleTitleThe psychological consequences of offering mutation searching in the family for those at risk of hereditary breast and ovarian cancer – a pilot study Psychooncology 9 537–48 Occurrence Handle10.1002/1099-1611(200011/12)9:6<537::AID-PON479>3.3.CO;2-L Occurrence Handle1:STN:280:DC%2BD3M7jtVKksQ%3D%3D Occurrence Handle11180589
RT Croyle KR Smith JR Botkin et al. (1997) ArticleTitlePsychological responses to BRCA1 mutation testing: Preliminary findings Health Psychol 16 63–72 Occurrence Handle10.1037//0278-6133.16.1.63 Occurrence Handle1:STN:280:ByiC1c%2FmsVQ%3D Occurrence Handle9028816
LS Di Prospero M Seminsky J Honeyford et al. (2001) ArticleTitlePsychosocial issues following a positive result of genetic testing for BRCA1 and BRCA2 mutations: Findings from a focus group and a needs-assessment survey CMAJ 164 1005–9 Occurrence Handle1:STN:280:DC%2BD3M3itVymtg%3D%3D Occurrence Handle11314429
M Dorval AF Patenaude KA Schneider et al. (2000) ArticleTitleAnticipated versus actual emotional reactions to disclosure of results of genetic tests for cancer susceptibility: Findings from p53 and BRCA1 testing programs J Clin Oncol 18 2135–42 Occurrence Handle1:STN:280:DC%2BD3c3nt1SjsQ%3D%3D Occurrence Handle10811679
AC DudokdeWit A Tibben HJ Duivenvoorden et al. (1998) ArticleTitleDistress in individuals facing predictive DNA testing for autosomal dominant late-onset disorders: Comparing questionnaire results with in-depth interviews. Rotterdam/Leiden Genetics Workgroup Am J Med Genet 75 62–74 Occurrence Handle10.1002/(SICI)1096-8628(19980106)75:1<62::AID-AJMG14>3.0.CO;2-Q Occurrence Handle1:STN:280:DyaK1c7htFegtA%3D%3D Occurrence Handle9450860
C Lerman S Narod Schulman K et al. (1996) ArticleTitleBRCA1 testing in families with hereditary breast-ovarian cancer. A prospective study of patient decision making and outcomes JAMA 275 1885–92 Occurrence Handle10.1001/jama.275.24.1885 Occurrence Handle1:STN:280:BymB2MnjsVY%3D Occurrence Handle8648868
C Lerman MD Schwartz TH Lin et al. (1997) ArticleTitleThe influence of psychological distress on use of genetic testing for cancer risk J Consult Clin Psychol 65 414–20 Occurrence Handle10.1037//0022-006X.65.3.414 Occurrence Handle1:STN:280:ByiA3MvltVE%3D Occurrence Handle9170764
LN Lodder PG Frets RW Trijsburg et al. (2002) ArticleTitleOne year follow-up of women opting for presymptomatic testing for BRCA1 and BRCA2: Emotional impact of the test outcome and decisions on risk management (surveillance or prophylactic surgery) Breast Cancer Res Treat 73 97–112 Occurrence Handle10.1023/A:1015269620265 Occurrence Handle1:CAS:528:DC%2BD38XksFehtrw%3D Occurrence Handle12088120
JV Pasacreta L Jacobs JK. Cataldo (2002) ArticleTitleGenetic testing for breast and ovarian cancer risk: the psychosocial issues Am J Nurs quiz 48 IssueID102 40–7
AY Kinney YA Choi B DeVellis et al. (2000) ArticleTitleAttitudes toward genetic testing in patients with colorectal cancer Cancer Pract 8 178–86 Occurrence Handle10.1046/j.1523-5394.2000.84008.x Occurrence Handle1:STN:280:DC%2BD387ms1Kisg%3D%3D Occurrence Handle11898257
K Glanz J Grove C Lerman C Gotay et al. (1999) ArticleTitleCorrelates of intentions to obtain genetic counseling and colorectal cancer gene testing among at-risk relatives from three ethnic groups Cancer Epidemiol Biomarkers Prev 8 329–36 Occurrence Handle1:STN:280:DyaK1M3isVSntg%3D%3D Occurrence Handle10207637
SJ Durfy DJ Bowen A McTiernan et al. (1999) ArticleTitleAttitudes and interest in genetic testing for breast and ovarian cancer susceptibility in diverse groups of women in western Washington Cancer Epidemiol Biomarkers Prev 8 369–75 Occurrence Handle1:STN:280:DyaK1M3isVSnuw%3D%3D Occurrence Handle10207642
RT Croyle C. Lerman (1993) ArticleTitleInterest in genetic testing for colon cancer susceptibility: cognitive and emotional correlates Prev Med 22 284–92 Occurrence Handle10.1006/pmed.1993.1023 Occurrence Handle1:STN:280:ByyB2cfht1Y%3D Occurrence Handle8483865
SC Lee BA Bernhardt KJ. Helzlsouer (2002) ArticleTitleUtilization of BRCA1/2 genetic testing in the clinical setting: report from a single institution Cancer 94 1876–85 Occurrence Handle10.1002/cncr.10420 Occurrence Handle11920551
PM Salkovskis KA. Rimes (1997) ArticleTitlePredictive genetic testing: Psychological factors J Psychosom Res 43 477–87 Occurrence Handle10.1016/S0022-3999(97)00170-0 Occurrence Handle1:STN:280:DyaK1c%2Fls1WjsQ%3D%3D Occurrence Handle9394264
HS Thompson HB Valdimarsdottir C Duteau-Buck et al. (2002) ArticleTitlePsychosocial predictors of BRCA counseling and testing decisions among urban African-American women Cancer Epidemiol Biomarkers Prev 11 1579–85 Occurrence Handle12496047
M Horowitz N Wilner W. Alvarez (1979) ArticleTitleImpact of Event Scale: a measure of subjective stress Psychosom Med 41 209–18 Occurrence Handle1:STN:280:CSaB2cjltVw%3D Occurrence Handle472086
EC Sundin MJ. Horowitz (2002) ArticleTitleImpact of Event Scale: psychometric properties Br J Psychiatry 180 205–9 Occurrence Handle10.1192/bjp.180.3.205 Occurrence Handle11872511
B Thewes B Meiser IB. Hickie (2001) ArticleTitlePsychometric properties of the Impact of Event Scale amongst women at increased risk for hereditary breast cancer Psychooncology 10 459–68 Occurrence Handle1:STN:280:DC%2BD3Mnps1Gjsw%3D%3D Occurrence Handle11747058
C. Spielberger (1983) State-Trait Anxiety Inventory (Form Y) Mind Garden Palo Alto, CA
PC Kendall AJ Finch SuffixJr SM Auerbach et al. (1976) ArticleTitleThe State-Trait Anxiety Inventory: a systematic evaluation J Consult Clin Psychol 44 406–12 Occurrence Handle10.1037//0022-006X.44.5.809 Occurrence Handle1:STN:280:CSmB3Mzos1c%3D Occurrence Handle932270
MA. Hamilton (1960) ArticleTitleA rating scale for depression J Neurol Neurosurg Psychiatry 23 56–62 Occurrence Handle1:STN:280:CC%2BC2M7oslU%3D Occurrence Handle14399272
AT Beck CH Ward M Mendelson et al. (1961) ArticleTitleAn inventory for measuring depression Arch Gen Psychiatry 4 561–71 Occurrence Handle1:STN:280:CC%2BD3cjmtFQ%3D Occurrence Handle13688369
Zung WWK. (1965) ArticleTitleA self-rating depression scale Arch Gen Psychiatry 12 63–70 Occurrence Handle1:STN:280:CCqD38ngvFc%3D Occurrence Handle14221692
Sayetta R, Johnson D. Basic data on depressive symptomatology, 80–1666. Washington, DC: United States Government Printing Office, Public Health Services, DHEW (PHS), 1980.
L. Radloff (1977) ArticleTitleCES-D Scale: a self-report depression scale for research in the general population Appl Psychol Measur 1 385–401
I McDowell C. Newell (1996) Measuring Health: A Guide to Rating Scales and Questionnaires Oxford University Press New York
FM Giardiello JD Brensinger GM. Petersen (2001) ArticleTitleAGA technical review on hereditary colorectal cancer and genetic testing Gastroenterology 121 198–213 Occurrence Handle1:CAS:528:DC%2BD3MXlt1yktLs%3D Occurrence Handle11438509
P. Snaith (1993) ArticleTitleWhat do depression rating scales measure? Br J Psychiatry 163 293–8 Occurrence Handle1:STN:280:ByuD3crksF0%3D Occurrence Handle8401956
Coyne J, Kruss L, Racioppo M et al. What do ratings of cancer-specific distress mean among women at high risk of breast and ovarian cancer? Am J Med Genet 2002.
B Meiser JL. Halliday (2002) ArticleTitleWhat is the impact of genetic counseling in women at increased risk of developing hereditary breast cancer? A meta-analytic review Soc Sci Med 54 1463–70 Occurrence Handle10.1016/S0277-9536(01)00133-2 Occurrence Handle12061481
K Aktan-Collan A Haukkala JP Mecklin et al. (2001) ArticleTitlePsychological consequences of predictive genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): A prospective follow-up study Int J Cancer 93 608–11
D Cella C Hughes A Peterman et al. (2002) ArticleTitleA brief assessment of concerns associated with genetic testing for cancer: the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire Health Psychol 21 564–72 Occurrence Handle10.1037//0278-6133.21.6.564 Occurrence Handle12433008
D Moher KF Schulz DG. Altman (2001) ArticleTitleThe CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials Lancet 357 1191–4 Occurrence Handle10.1016/S0140-6736(00)04337-3 Occurrence Handle1:STN:280:DC%2BD3MzisFehtQ%3D%3D Occurrence Handle11323066
MD Schwartz C Hughes J Roth et al. (2000) ArticleTitleSpiritual faith and genetic testing decisions among high-risk breast cancer probands Cancer Epidemiol Biomarkers Prev 9 381–5 Occurrence Handle1:STN:280:DC%2BD3c3lt1Cktw%3D%3D Occurrence Handle10794482
MD Schwartz BN Peshkin C Hughes et al. (2002) ArticleTitleImpact of BRCA1/BRCA2 mutation testing on psychologic distress in a clinic-based sample J Clin Oncol 20 514–20 Occurrence Handle10.1200/JCO.20.2.514 Occurrence Handle11786581
LC Friedman JA Webb CS Richards et al. (1999) ArticleTitlePsychological impact of receiving negative BRCA1 mutation test results in Ashkenazim Genet Med 1 74–9 Occurrence Handle1:STN:280:DC%2BD3MnjsFSmsw%3D%3D Occurrence Handle11336456
B Meiser PN Butow AL Barratt et al. (2001) ArticleTitleLong-term outcomes of genetic counseling in women at increased risk of developing hereditary breast cancer Patient Educ Couns 44 215–25 Occurrence Handle10.1016/S0738-3991(00)00191-9 Occurrence Handle1:STN:280:DC%2BD3MrgsVSkuw%3D%3D Occurrence Handle11553422
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Vadaparampil, S.T., Ropka, M. & Stefanek, M.E. Measurement of psychological factors associated with genetic testing for hereditary breast, ovarian and colon cancers. Familial Cancer 4, 195–206 (2005). https://doi.org/10.1007/s10689-004-1446-7
Received:
Accepted:
Issue Date:
DOI: https://doi.org/10.1007/s10689-004-1446-7