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espanolRESUMEN Este estudio aborda el perfil de sujetos en riesgo cuyo impacto psicologico a largo plazo de las pruebas presintomaticas (PST) para la polineuropatia amiloide familiar (FAP) TTR V30M es negativo. La muestra consistio en 177 sujetos mayores de 20 anos que tenian un 50% de riesgo de FAP, que habian realizado el PST hacia al menos tres anos. Se contacto con los participantes por correo, solo una vez, para responder el cuestionario sociodemografico y el Inventario de sintomas breves (BSI), la Escala de ansiedad de autoclasificacion de Zung (SAS) y el Inventario de depresion de Beck (BDI). El 22.6% (BSI), el 16.4% (SAS) y el 9% (BDI) de los sujetos de la muestra presentaron un impacto psicologico negativo despues de haber realizado el PST durante mas de 3 anos. Los sujetos con valores clinicamente significativos en BSI, SAS y BDI tienen un perfil superpuesto con respecto a la muestra total, excepto con respecto a la edad, ya que los sujetos clinicamente deprimidos tienen una edad media mas alta. Las mujeres casadas o que viven en pareja, con edades entre 30 y 45 anos, que trabajan, son portadoras y han realizado la prueba PST durante 6-7 anos son un grupo que suscita una mayor preocupacion y requiere un papel mas activo con respecto al impacto psicologico del PST para FAP. El papel del psicologo clinico y de la salud con estos pacientes es decisivo en el ajuste del resultado de la prueba presintomatica, asi como en la adhesion a los tratamientos disponibles que conducen a una mejor calidad de vida en los portadores. EnglishABSTRACT This study addresses the profile of at-risk subjects whose long-term psychological impact of presymptomatic testing (PST) for Familial Amyloid Polyneuropathy (FAP) TTR V30M is negative. The sample consisted of 177 subjects, aged over 20 years that were 50% at-risk for FAP, and performed the PST at least three years ago. Participants were contacted by mail, one time only, to answer the sociodemographic questionnaire and the Brief Symptom Inventory (BSI), the Self-Rating Anxiety Scale of Zung (SAS), and the Beck Depression Inventory (BDI). From the sample, 22.6% (BSI), 16.4% (SAS), and 9% (BDI) subjects presented negative psychological impact, after having performed the PST for more than 3 years. Subjects with clinically significant values in BSI, SAS, and BDI have an overlapping profile concerning the total sample, except regarding age, since clinically depressed subjects have a higher mean age. Married women or living in unmarried unions, aged between 30 and 45 years, employed, carriers, and having performed the PST test for 6-7 years are a group raising higher concern and requiring a more active role with respect to the psychological impact of the PST for FAP. The role of the clinical and health psychologist with these patients is critical in the adjustment to the presymptomatic test result as well as in adherence to the available treatments conducive to a better quality of life, in carriers.

Long-term Negative Psychological Impact of Presymptomatic Testing on Familial Amyloid Polyneuropathy