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2012 | OriginalPaper | Hoofdstuk

15 Erfelijkheidsadvisering

Auteur : E.M.A Smets

Gepubliceerd in: Psychologie en geneeskunde

Uitgeverij: Bohn Stafleu van Loghum

Samenvatting

Sinds doorbraken in DNA-technologie in de jaren zeventig van de vorige eeuw is in sneltreinvaart kennis verkregen over de erfelijkheid van verschillende aandoeningen. Als gevolg daarvan krijgen we steeds meer te maken met informatie over de erfelijkheid van ziekten en aandoeningen.

vorige hoofdstuk 14 Gynaecologie en obstetrie

volgende hoofdstuk 16 Seksualiteit

Beck AT (1996) Beck Depression Inventory. Harcourt Brace, Philadelphia, PA

Berkenstadt M, Shiloh S, Barkai G, Katznelson, M.B. & & Goldman. B. (1999). Perceived Personal Control (PPC): a new concept in measuring outcome of genetic counseling. American Journal of Medical Genetics, 82, 53–59.

Bleiker E, Wigbout G, Rens A van, Verhoef, S., Veer, L. van & ’t & & Aaronson, N. (2005a). Withdrawal from genetic counselling for cancer. Hereditary Cancer and Clinical Practice, 3, 19–27.

Bleiker EMA, Menko FH, Taal BG, Kluijt I, Wever LDV, Gerritsma MA, Vasen, H.F.A. & & Aaronson, N.K. (2005b). Screening behavior of individuals at high risk for colorectal cancer. Gastroenterology, 128, 280–287.

Braithwaite D, Emery J, Walter F, Prevost, A. & & Sutton, S. (2006). Psychological impact of genetic counseling for familial cancer: a systematic review and meta-analysis. Familial Cancer, 5, 61–75.

Christiaans I, Langen, I.M. van, Birnie, E., Bonsel GJ, Wilde, A.A. & & Smets, E.M. (2009). Quality of life and psychological distress in hypertrophic cardiomyopathy mutation carriers: a cross-sectional cohort study. American Journal of Medical Genetics A, 149A, 602–612.

Claes E, Evers-Kiebooms G, Boogaerts A, Decruyenaere M, Denayer, L. & & Legius, E. (2003). Communication with close and distant relatives in the context of genetic testing for hereditary breast and ovarian cancer in cancer patients. American Journal of Medical Genetics A, 116A, 11–19.

Claes E, Evers-Kiebooms G, Denayer L, Decruyenaere M, Boogaerts A, Philippe, K. & & Legius, E. (2005). Predictive genetic testing for hereditary breast and ovarian cancer: psychological distress and illness representations 1 year following disclosure. Journal of Genetic Counseling, 14, 349–363.

Cohen, J.S. & & Biesecker, B.B. (2010). Quality of life in rare genetic conditions: a systematic review of the literature. American Journal of Medical Genetics A, 152A, 1136–1156.

Dijk, S. van, Asperen, C.J. van, Jacobi, C.E., Vink, G.R., Tibben, A., Breuning, M.H. & & Otten, W. (2004). Variants of uncertain clinical significance as a result of BRCA1/2 testing: impact of an ambiguous breast cancer risk message. Genetic Testing, 8, 235–239.

Dijk, S. van, Otten, W., Timmermans, D.R., Asperen, C.J. van, Meijers-Heijboer, H., Tibben, A., Breuning, M.H. & & Kievit, J. (2005). What & ’s the message? Interpretation of an uninformative BRCA1/2 test result for women at risk of familial breast cancer. Genetics in Medicine, 7, 239–245.

Dijk, S. van, Timmermans, D.R., Meijers-Heijboer, H., Tibben, A., Asperen, C.J. van & & Otten, W. (2006). Clinical characteristics affect the impact of an uninformative DNA test result: the course of worry and distress experienced by women who apply for genetic testing for breast cancer. Journal of Clinical Oncology, 24, 3672–3677.

Edwards A, Gray J, Clarke A, Dundon J, Elwyn G, Gaff C, Hood K, Iredale R, Swivell S, Show, C. & & Thorton, H. (2008). Interventions to improve risk communication in clinical genetics: systematic review. Patient Education and Counseling, 71, 4–25.

Forrest LE, Burke J, Bacic, S. & & Amor, D.J. (2008). Increased genetic counselling support improves communication of genetic information in families. Genetics in Medicine, 10, 167–172.

Gaff, C. & & Bylund, C.L. (2010). Family communication about genetics. New York: Oxford University Press.

Gaff CL, Clarke AJ, Atkinson P, Sivell S, Elwyn G, Iredale R, Thorton H, Dundon J, Shaw, C. & & Edwards, A. (2007). Process and outcome in communication of genetic information within families: a systematic review. European Journal of Human Genetics, 15, 999–1011.

Gaff CL, Collins V, Symes, T. & & Halliday, J. (2005). Facilitating family communication about predictive genetic testing: probands & ’ perceptions. Journal of Genetic Counseling, 14, 133–140.

Hadley DW, Ashida S, Jenkins JF, Calzone KA, Kirsch, I.R. & & Koehly, L.M. (2011). Colonoscopy use following mutation detection in Lynch syndrome: exploring a role for cancer screening in adaptation. Clinical Genetics, 79, 321–328.

Hallowell N, Ardern-Jones A, Eeles R, Foster C, Lucassen A, Moynihan, C. & & Watson, M. (2005). Communication about genetic testing in families of male BRCA1/2 carriers and non-carriers: patterns, priorities and problems. Clinical Genetics, 67, 492–502.

Helder DI, Kaptein AA, Kempen GMJ van, Weinman, J., Houwelingen, H.C. van & & Roos, R.A.C. (2002). Living with Huntington & ’s disease: Illness perceptions, coping mechanisms, and patients & ’ well-being. British Journal of Health Psychology, 7, 449–462.

Horowitz M, Wilner, N. & & Alvarez, W. (1979). Impact of Event Scale: a measure of subjective stress. Psychosomatic Medicine, 41, 209–218.

Jarvinen HJ, Aarnio M, Mustonen H, Aktan-Collan K, Aaltonen LA, Peltomaki P, Chapelle A de la & & Mecklin, J.P. (2000). Controlled 15-year trial on screening for colorectal cancer in families with hereditary nonpolyposis colorectal cancer. Gastroenterology, 118, 829–834.

Kasparian NA, Meiser B, Butow PN, Simpson, J.M. & & Mann, G.J. (2009). Genetic testing for melanoma risk: a prospective cohort study of uptake and outcomes among Australian families. Genetic Medicine, 11, 265–278.

Lerman C, Trock B, Rimer, B.K. & & Jepson, C. (1991). Psychological side effects of breast cancer screening. Health Psychology, 10, 259–267.

Lerman C, Hughes C, Lemon SJ, Main D, Snyder C, Durham C, Narod, S. & & Lynch, H.T (1998). What you don & ’t know can hurt you: adverse psychologic effects in members of BRCA1-linked and BRCA2-linked families who decline genetic testing. Journal of Clinical Oncology, 16, 1650–1654.

Leventhal H, Benyamini Y, Brownlee S et al. (1997). Illness representations: Theoretical Foundations. In K.J. Petrie & & J. Weinman (Eds.), Perceptions of health and illness: current research and applications. Amsterdam: Harwood Academic Publishers.

MacDonald DJ, Sarna L, Servellen, S.G. van, Bastani, R., Giger, J.N. & & Weitzel, J.N. (2007). Selection of family members for communication of cancer risk and barriers to this communication before and after genetic cancer risk assessment. Genetics in Medicine, 9, 275–282.

Marteau TM, French DP, Griffin SJ, Prevost AT, Sutton S, Watkinson C, Attwood, S. & & Hollands, G.J. (2010). Effects of communicating DNA-based disease risk estimates on risk-reducing behaviours. Cochrane Database of Systematic Reviews, CD007275.

Meiser, B. & & Halliday, J.L. (2002). What is the impact of genetic counselling in women at increased risk of developing hereditary breast cancer? A meta-analytic review. Social Science and Medicine, 54, 1463–1470.

Mesters I, Ausems M, Eichhorn, S. & & Vasen, H. (2005). Informing one & ’s family about genetic testing for hereditary non-polyposis colorectal cancer (HNPCC): a retrospective exploratory study. Family Cancer, 4, 163–167.

Metcalfe KA, Foulkes WD, Kim-Sing C, Ainsworth P, Rosen B, Armel S, Poll A, Eisen A, Gilchrist D, Chudley A, Ghardirian P, Maugard C, Lemire EG, Sun, P. & & Narod, S.A. (2008). Family history as a predictor of uptake of cancer preventive procedures by women with a BRCA1 or BRCA2 mutation. Clinical Genetics, 73, 474–479.

Miller SM, Roussi P, Daly MB, Buzaglo JS, Sherman K, Godwin AK, Balshem, A. & & Atchinson, M.E. (2005). Enhanced counseling for women undergoing BRCA1/2 testing: impact on subsequent decision making about risk reduction behaviors. Health Education and Behavior, 32, 654–667.

Moss-Moris R, Weinman J, Petrie KJ, Horne R, Cameron, L.D. & & Buick, D. (2002). The revised Illness Perception Questionnaire. Psychology and Health, 17, 1–16.

O & ’Connor, A.M. (1995). Validation of a Decision Conflict Scale. Medical Decision Making, 15, 25–30.

Oostrom I van (2006). Family matters. Adjustment to genetic cancer susceptibility testing (proefschrift). Rotterdam: Erasmus Universiteit Rotterdam.

Peterson SK, Watts BG, Koehly LM, Vernon SW, Baile WF, Kohlmann, W.K. & & Grtiz, E.R. (2003). How families communicate about HNPCC genetic testing: findings from a qualitative study. American Journal of Medical Genetics, 119C, 78–86.

Pieterse AH, Ausems MG, Spreeuwenberg, P. & & Dulmen, S. van (2011). Longer-term influence of breast cancer genetic counseling on cognitions and distress: smaller benefits for affected versus unaffected women. Patient Education and Counseling, 85, 425–431.

Ploeg, H.M. van der, Defares , P. & & Spielberger, C.D. (1980). Handleiding bij de Zelf-Beoordelings Vragenlijst (ZBV). Lisse: Swets & & Zeitlinger.

Resta R, Biesecker BB, Bennett RL, Blum S, Hahn SE, Strecker, M.N. & & Williams, J.L. (2006). A new definition of genetic counseling: National Society of Genetic Counselors & ’ Task Force report. Journal of Genetic Counseling, 15, 77–83.

Roosmalen, M.S. van, Stalmeier, P.F., Verhoef, L.C., Hoekstra-Weebers, J.E., Oosterwijk, J.C., Hoogerbrugge, N., Moog, U. & & Daal, W.A. van (2004). Randomised trial of a decision aid and its timing for women being tested for a BRCA1/2 mutation. British Journal of Cancer, 90, 333–342.

Schlich-Bakker KJ, Ausems MG, Schipper M, Kroode, H.F. ten, Warlam-Rodenhuis, C.C. & & Bout, J. van den (2008). BRCA1/2 mutation testing in breast cancer patients: a prospective study of the long-term psychological impact of approach during adjuvant radiotherapy. Breast Cancer Research and Treatment, 109, 507–514.

Siglen E, Bjorvatn C, Engebretsen L, Berglund, G. & & Natvig, G. (2007). The influence of cancer-related distress and sense of coherence on anxiety and depression in patients with hereditary cancer. Journal of Genetic Counseling, 16, 607–615.

Sivell S, Elwyn G, Gaff C, Clarke A, Iredale R, Shaw C, Dundon J, Thorton, H. & & Edwards, A. (2008). How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review. Journal of Genetic Counseling, 17, 30–63.

Smerecnik CM, Mesters I, Verweij E, Vries NK de & & Vries, H. de (2009). A systematic review of the impact of genetic counseling on risk perception accuracy. Journal of Genetic Counseling, 18, 217–228.

Smets EM, Pieterse AH, Aalfs CM, Ausems, M.G. & & Dulmen, A.M. van (2006). The perceived personal control (PPC) questionnaire as an outcome of genetic counseling: reliability and validity of the instrument. American Journal of Medical Genetics A, 140, 843–850.

Snoo, F.A. de, Riedijk, S.R., Mil, A.M. van, Bergman, W., Huurne, J.A.C. ter, Timman, R., Bertina, W., Gruis, N.A., Vasen, H.F.A., Haeringen, A. van, Breuning, M.H. & & Tibben, A. (2008). Genetic testing in familial melanoma: uptake and implications. Psycho-Oncology, 17, 790–796.

Sprangers, M.A. & & Schwartz, C.E. (1999). Integrating response shift into health-related quality of life research: a theoretical model. Social Science and Medicine, 48, 1507–1515.

Tibben A, Niermeijer MF, Roos RA, Vegter-van de Vlis, M., Frets PG, Ommen GJ van, Kamp, J.J. van de & & Verhage, F. (1992). Understanding the low uptake of presymptomatic DNA testing for Huntington & ’s disease. Lancet, 340, 1416.

Timman R, Roos R, Maat-Kievit, A. & & Tibben, A. (2004). Adverse effects of predictive testing for Huntington disease underestimated: long-term effects 7-10 years after the test. Health Psycholology, 23, 189–197.

Vos J (2011). Opening the psychological black box in genetic counseling. A counselee oriented, integrative approach on the impact of DNA-testing for breast and ovarian cancer on the lives of counselees (proefschrift). Leiden: Universiteit Leiden.

Ware, J.E. & & Sherbourne, C.D. (1992). The MOS 36-item short-form health survey (SF-36). Conceptual framework and item selection. Med Care 30, 473–483.

Zigmond, A.S. & & Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361–370.

Titel: 15 Erfelijkheidsadvisering
Auteur: E.M.A Smets
Uitgeverij: Bohn Stafleu van Loghum
Boek: Psychologie en geneeskunde
Print ISBN: 978-90-313-9889-8

Elektronisch ISBN: 978-90-313-9890-4

Copyright: 2012
DOI: https://doi.org/10.1007/978-90-313-9890-4_15

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