Percepción del riesgo en sujetos con riesgo de Polineuropatía Amiloide Familiar
Publicado
nov 14, 2017
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Ângela Leite
Maria Alzira Pimenta Dinis
http://orcid.org/0000-0002-2198-6740
Jorge Sequeiros
Constança Paúl
http://orcid.org/0000-0002-2198-6740
Jorge Sequeiros
Constança Paúl
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Resumen
Los objetivos de este estudio son saber si los sujetos en riesgo eran conscientes de su riesgo del 50% para la polineuropatía amiloide familiar (PAF); conocer el valor del riesgo subjetivo; y comprender la asociación entre las características sociodemográficas y la percepción del riesgo y entre el riesgo real y la percepción subjetiva del riesgo. Se examinaron 174 sujetos con riesgo de PAF del 50%. 52,9% de los sujetos en riesgo eran conscientes de su condición de riesgo del 50%. El valor medio del riesgo subjetivo fue mayor y más cercano al 50% cuando los sujetos eran conscientes de su condición de riesgo del 50%. La educación se asoció a una mayor conciencia de estar al 50% de riesgo. Parece que la información sobre los conocimientos previos antes de realizar el asesoramiento genético aumenta el riesgo subjetivo.
Keywords
Risk perception, psychological risk, subjective risk, objective risk, FAPPercepción del riesgo, riesgo psicológico, riesgo subjetivo, riesgo objetivo, polineuropatía amiloide familiar (PAF)
References
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Cantor, N., & Norem, J. K. (1989). Defensive pessimism and stress coping. Social Cognition, 7, 92-112. http://dx.doi.org/10.1521/soco.1989.7.2.92
Coelho, T., Maia, L. F., Martins da Silva, A., Waddington, M., Planté-Bordeneuve, V., Lozeron, P., … Grogan, D. R. (2012). Tafamidis for transthyretin familial amyloid polyneuropathy: A randomized, controlled trial. Neurology, 79, 785-792. http://dx.doi.org/10.1212/WNL.0b013e3182661eb1
Coutinho, P. (1976). Aspectos neurológicos da PAF. Boletim do Hospital, 1, 27-34.
Cox, S. M., & McKellin, W. (1999). ‘There’s this thing in our family’: Predictive testing and the construction of risk for Huntington Disease. Sociology of Health & Illness, 21(5), 622-646. http://dx.doi.org/10.1111/1467-9566.00176
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Etchegary, H. (2011). 'I put it on the back burner most days': Living with chronic risk. Health, 15(6), 633-649. http://dx.doi.org/10.1177/1363459310364162
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Evers-Kiebooms, G., & Fryns, J. P. (1999). Conseil génétique dans les maladies neurodégénératives: Approche multidisciplinaire dans le diagnostic prédictif. In A. Brice & D. F. Schorderet (Eds.), Neurogénétique: Affections hérédo-dégénératives, Collection Traité de neurologie (pp. 13-22). Paris: Doin.
Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education. Social Science & Medicine, 51(6), 831-841. http://dx.doi.org/10.1016/S0277-9536(00)00064-2
Folstein, S. E., Franz, M. L., Jensen, B. A., Chase, G. A., & Folstein, M. F. (1983). Conduct disorder and affective disorder among offspring of patients with Huntington's disease. Psychological Medicine, 13(1), 45-52. http://dx.doi.org/10.1017/S0033291700050054
Hoffmann, T. C., & Del Mar, C. (2015). Patients' expectations of the benefits and harms of treatments, screening, and tests: A systematic review. JAMA Internal Medicine, 175(2), 274-286. http://dx.doi.org/10.1001/jamainternmed.2014.6016
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Jamieson, C. E. (2001). Genetic testing for late onset diseases: Current research practices and analysis of policy development. Ottawa: Health Canada Applied Research and Analysis Directorate.
Joffe, H. (2003). Risk: From perception to social representation. British Journal of Social Psychology, 42(1), 55-73. http://dx.doi.org/10.1348/014466603763276126
Lippman-Hand, A., & Fraser, F. C. (1979). Genetic counselling – The postcounselling period: I. Parents' perceptions of uncertainty. American Journal Medicine Genetics, 4(1), 51-71. http://dx.doi.org/10.1002/ajmg.1320040108
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Pelletier, S., & Dorval, M. (2004). Predictive genetic testing raises new professional challenges for psychologists. Canadian Psychology, 45(1), 16-30. http://dx.doi.org/10.1037/h0086968
Petersen, A. (2001). Biofantasies: Genetics and medicine in the print media. Social Science and Medicine, 52(8), 1255-1268. http://dx.doi.org/10.1016/S0277-9536(00)00229-X
Quaid, K. A., Sims, S. L., Swenson, M. M., Harrison, J. M., Moskowitz, C., Stepanov, N., … Westphal, B. J. (2008). Living at risk: Concealing risk and preserving hope in Huntington disease. Journal Genetic Counseling, 17(1), 117-128. http://dx.doi.org/10.1007/s10897-007-9133-0
Sequeiros, J. (1996). Aconselhamento genético e teste preditivo na doença de Machado-Joseph. In J. Sequeiros (Ed.), O Teste Preditivo da doença de Machado-Joseph (pp. 33-48). Porto: UnIGENe, IBMC.
Siaki, L. A., Loescher, L. J., & Trego, L. L. (2013). Synthesis strategy: Building a culturally sensitive mid-range theory of risk perception using literary, quantitative, and qualitative methods. Journal of Advanced Nursing, 69(3), 726-737. http://dx.doi.org/10.1111/j.1365-2648.2012.06096
Sjöberg, L. (2004). Principles of risk perception applied to gene technology. To overcome the resistance to applications of biotechnology, research on risk perception must take a closer look at the public's reasons for rejecting this technology. EMBO Reports, 5(S1), S47-S51. http://dx.doi.org/10.1038/sj.embor.7400258
Sjöberg, L. (2012). Risk perception and societal response. In Handbook of risk theory (pp. 661-675). Netherlands: Springer.
Sjöberg, L., Moen, B. -E., & Rundmo, T. (2004). Explaining risk perception. An evaluation of the psychometric paradigm in risk perception research. Trondheim: Rotunde Publikasjoner.
Slovic, P. (1987). Perception of risk. Science, 236(4799), 280-285. http://dx.doi.org/10.2307/1698637
Slovic, P., & Elke, W. (2002, April). Perception of risk posed by extreme events. Paper presented at the Conference Risk Management Strategies in an Uncertain World, New York. Retrieved from https://www.ldeo.columbia.edu/chrr/documents/meetings/roundtable/pdf/roundtable_exec_final.pdf
Slovic, P., & Peters, E. (2006). Risk perception and affect. Current Directions in Psychological Science, 15, 6322-325. http://dx.doi.org/10.1111/j.1467-8721.2006.00461
Taylor, S. D. (2003). Predictive testing for an individual at 25% risk for Huntington’s disease: Present conundrums, future challenges. Journal of Futures Studies, 7(4), 27-36.
Ulleberg, P., & Rundmo, T. (1996, September). Risk perception, affectivity and health. Presented at the 10th Conference of European Health Psychology, Dublin, Ireland.
Weber, E. U. (2006). Evidence-based and description-based perceptions of long term risk: Why global warming does not scare us (yet). Climatic Change, 77(1-2), 103-120. http://dx.doi.org/10.1007/s10584-006-9060-3
Wexler, N. S. (1979). Genetic “russian roulette”: The experience of being "at risk" for Huntington's disease. In S. Kessler (Ed.), Genetic counselling: Psychological dimensions (pp. 199-220). London: Academic Press.
Brewer, N. T., Chapman, G. B., Gibbons, F. X., Gerrard, M., McCaul, K. D., & Weinstein, N. D. (2007). Meta-analysis of the relationship between risk perception and health behavior: The example of vaccination. Health Psychology, 26(2), 136-145. http://dx.doi.org/10.1037/0278-6133.26.2.136
Cantor, N., & Norem, J. K. (1989). Defensive pessimism and stress coping. Social Cognition, 7, 92-112. http://dx.doi.org/10.1521/soco.1989.7.2.92
Coelho, T., Maia, L. F., Martins da Silva, A., Waddington, M., Planté-Bordeneuve, V., Lozeron, P., … Grogan, D. R. (2012). Tafamidis for transthyretin familial amyloid polyneuropathy: A randomized, controlled trial. Neurology, 79, 785-792. http://dx.doi.org/10.1212/WNL.0b013e3182661eb1
Coutinho, P. (1976). Aspectos neurológicos da PAF. Boletim do Hospital, 1, 27-34.
Cox, S. M., & McKellin, W. (1999). ‘There’s this thing in our family’: Predictive testing and the construction of risk for Huntington Disease. Sociology of Health & Illness, 21(5), 622-646. http://dx.doi.org/10.1111/1467-9566.00176
Darker, C., & Phillips, A. (2016). Risk perception. In M. Gellman & R. Turner (Eds.), Encyclopedia of Behavioral Medicine (pp. 1-3). New York: Springer-Verlag. http://dx.doi.org/10.1007/978-1-4614-6439-6_866-2
Etchegary, H. (2011). 'I put it on the back burner most days': Living with chronic risk. Health, 15(6), 633-649. http://dx.doi.org/10.1177/1363459310364162
Evers-Kiebooms, G., & Decruyenaere, M. (1998). Predictive testing for Huntington's disease: A challenge for persons at risk and for professionals. Patient Education and Counseling, 35, 15-26. http://dx.doi.org/10.1016/S0738-3991(98)00086-X
Evers-Kiebooms, G., & Fryns, J. P. (1999). Conseil génétique dans les maladies neurodégénératives: Approche multidisciplinaire dans le diagnostic prédictif. In A. Brice & D. F. Schorderet (Eds.), Neurogénétique: Affections hérédo-dégénératives, Collection Traité de neurologie (pp. 13-22). Paris: Doin.
Evers-Kiebooms, G., Welkenhuysen, M., Claes, E., Decruyenaere, M., & Denayer, L. (2000). The psychological complexity of predictive testing for late onset neurogenetic diseases and hereditary cancers: implications for multidisciplinary counselling and for genetic education. Social Science & Medicine, 51(6), 831-841. http://dx.doi.org/10.1016/S0277-9536(00)00064-2
Folstein, S. E., Franz, M. L., Jensen, B. A., Chase, G. A., & Folstein, M. F. (1983). Conduct disorder and affective disorder among offspring of patients with Huntington's disease. Psychological Medicine, 13(1), 45-52. http://dx.doi.org/10.1017/S0033291700050054
Hoffmann, T. C., & Del Mar, C. (2015). Patients' expectations of the benefits and harms of treatments, screening, and tests: A systematic review. JAMA Internal Medicine, 175(2), 274-286. http://dx.doi.org/10.1001/jamainternmed.2014.6016
Inouye, J. (2014). Risk perception: Theories, strategies, and next steps. Wellington: Campbell Institute.
Jamieson, C. E. (2001). Genetic testing for late onset diseases: Current research practices and analysis of policy development. Ottawa: Health Canada Applied Research and Analysis Directorate.
Joffe, H. (2003). Risk: From perception to social representation. British Journal of Social Psychology, 42(1), 55-73. http://dx.doi.org/10.1348/014466603763276126
Lippman-Hand, A., & Fraser, F. C. (1979). Genetic counselling – The postcounselling period: I. Parents' perceptions of uncertainty. American Journal Medicine Genetics, 4(1), 51-71. http://dx.doi.org/10.1002/ajmg.1320040108
Patenaude, A. F., Guttmacher, A. E., & Collins, F. S. (2002). Genetic testing and psychology: New rules, new responsabilities. American Psychologist, 57(4), 271-282. http://dx.doi.org/10.1037/0003-066X.57.4.271
Pelletier, S., & Dorval, M. (2004). Predictive genetic testing raises new professional challenges for psychologists. Canadian Psychology, 45(1), 16-30. http://dx.doi.org/10.1037/h0086968
Petersen, A. (2001). Biofantasies: Genetics and medicine in the print media. Social Science and Medicine, 52(8), 1255-1268. http://dx.doi.org/10.1016/S0277-9536(00)00229-X
Quaid, K. A., Sims, S. L., Swenson, M. M., Harrison, J. M., Moskowitz, C., Stepanov, N., … Westphal, B. J. (2008). Living at risk: Concealing risk and preserving hope in Huntington disease. Journal Genetic Counseling, 17(1), 117-128. http://dx.doi.org/10.1007/s10897-007-9133-0
Sequeiros, J. (1996). Aconselhamento genético e teste preditivo na doença de Machado-Joseph. In J. Sequeiros (Ed.), O Teste Preditivo da doença de Machado-Joseph (pp. 33-48). Porto: UnIGENe, IBMC.
Siaki, L. A., Loescher, L. J., & Trego, L. L. (2013). Synthesis strategy: Building a culturally sensitive mid-range theory of risk perception using literary, quantitative, and qualitative methods. Journal of Advanced Nursing, 69(3), 726-737. http://dx.doi.org/10.1111/j.1365-2648.2012.06096
Sjöberg, L. (2004). Principles of risk perception applied to gene technology. To overcome the resistance to applications of biotechnology, research on risk perception must take a closer look at the public's reasons for rejecting this technology. EMBO Reports, 5(S1), S47-S51. http://dx.doi.org/10.1038/sj.embor.7400258
Sjöberg, L. (2012). Risk perception and societal response. In Handbook of risk theory (pp. 661-675). Netherlands: Springer.
Sjöberg, L., Moen, B. -E., & Rundmo, T. (2004). Explaining risk perception. An evaluation of the psychometric paradigm in risk perception research. Trondheim: Rotunde Publikasjoner.
Slovic, P. (1987). Perception of risk. Science, 236(4799), 280-285. http://dx.doi.org/10.2307/1698637
Slovic, P., & Elke, W. (2002, April). Perception of risk posed by extreme events. Paper presented at the Conference Risk Management Strategies in an Uncertain World, New York. Retrieved from https://www.ldeo.columbia.edu/chrr/documents/meetings/roundtable/pdf/roundtable_exec_final.pdf
Slovic, P., & Peters, E. (2006). Risk perception and affect. Current Directions in Psychological Science, 15, 6322-325. http://dx.doi.org/10.1111/j.1467-8721.2006.00461
Taylor, S. D. (2003). Predictive testing for an individual at 25% risk for Huntington’s disease: Present conundrums, future challenges. Journal of Futures Studies, 7(4), 27-36.
Ulleberg, P., & Rundmo, T. (1996, September). Risk perception, affectivity and health. Presented at the 10th Conference of European Health Psychology, Dublin, Ireland.
Weber, E. U. (2006). Evidence-based and description-based perceptions of long term risk: Why global warming does not scare us (yet). Climatic Change, 77(1-2), 103-120. http://dx.doi.org/10.1007/s10584-006-9060-3
Wexler, N. S. (1979). Genetic “russian roulette”: The experience of being "at risk" for Huntington's disease. In S. Kessler (Ed.), Genetic counselling: Psychological dimensions (pp. 199-220). London: Academic Press.
Cómo citar
Leite, Ângela, Pimenta Dinis, M. A., Sequeiros, J., & Paúl, C. (2017). Percepción del riesgo en sujetos con riesgo de Polineuropatía Amiloide Familiar. Universitas Psychologica, 16(3), 1–9. https://doi.org/10.11144/Javeriana.upsy16-3.rpsf
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