The impact of genetic counseling on knowledge and emotional responses in Spanish population with family history of breast cancer

Cabrera, Esther; Blanco, Ignacio; Yagüe, Carmen; Zabalegui, Adelaida

doi:10.1016/j.pec.2009.10.032

Cited by 28 publications

(32 citation statements)

References 30 publications

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“…Steinberg et al (2007) found that parents with less formal education had more misconceptions about the process of genetic transmission and they concluded that it is necessary to transmit information according to the needs of parents based on their prior knowledge and education level. Several studies confirmed that age and education level were consistent demographic predictors of genetics knowledge (Baldwin et al 2011;Cabrera et al 2010;Kaimal et al 2007;Kelly et al 2004;Seidenfeld and Antley 1981). We obtained similar results in our study, as a significantly greater percentage of parents with secondary/higher education correctly identified correctly answers about the etiology of deafness than did parents with primary education at pre-counseling.…”

Section: Genetic Counseling: Evaluation Of Genetic Knowledgesupporting

confidence: 90%

Non‐syndromic Sensorineural Prelingual Deafness: The Importance of Genetic Counseling in Demystifying Parents’ Beliefs About the Cause of Their Children's Deafness

Rodrigues

Paneque

Reis³

et al. 2013

Journal of Genetic Counseling

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Recent advances in molecular genetics have allowed the determination of the genetic cause of some childhood non-syndromic deafness. In Portugal only a small proportion of families are referred to a clinical genetics service in order to clarify the etiology of the deafness and to provide genetic counseling. Consequently, there are no published studies of the prior beliefs of parents about the causes of hereditary deafness of their children and their genetic knowledge after receipt of genetic counseling. In order to evaluate the impact of genetic counseling, 44 parents of 24 children with the diagnosis of non-syndromic sensorineural prelingual deafness due to mutations in the GJB2 (connexin 26), completed surveys before and after genetic counseling. Before counseling 13.6 % of the parents knew the cause of deafness; at a post-counseling setting this percentage was significantly higher, with 84.1 % of the parents accurately identifying the etiology. No significant differences were found between the answers of mothers and fathers either before or after genetic counseling. Parents' level of education was a significant factor in pre-test knowledge. After genetic counseling 95.5 % of the parents stated that the consultation had met their expectations, 70.5 % remembered correctly the inheritance pattern, and 93.2 % correctly recalled the chance of risk of deafness. These results underline the importance of genetic counseling in demystifying parents' beliefs about the etiology of their children's deafness.

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Section: Genetic Counseling: Evaluation Of Genetic Knowledgesupporting

confidence: 90%

Non‐syndromic Sensorineural Prelingual Deafness: The Importance of Genetic Counseling in Demystifying Parents’ Beliefs About the Cause of Their Children's Deafness

Rodrigues

Paneque

Reis³

et al. 2013

Journal of Genetic Counseling

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“…Esta interpretación vendría avalada por los datos de nuestro estudio que muestran que al cabo de dos o tres semanas el malestar emocional se ha reducido, lo cual ha sido observado también en algunos trabajos que han evaluado el malestar emocional un mes después de la visita en el caso del cáncer de mama (12) y al cabo de varios meses (13) en pacientes con diagnóstico de CCHNP. No obstante, hay que considerar que en el caso del cáncer de mama esta relación no es tan clara, pues se ha mostrado que los niveles de malestar previos a la visita pueden mantenerse durante bastante tiempo (14)(15) . La evaluación de la percepción del riesgo antes la visita indica que la preocupación al año es claramente inferior a la expresada al referirse al riesgo a 10 años o a lo largo de la vida, posiblemente porque las personas valoran que la probabilidad de tener cáncer a un año vista es muy baja.…”

Section: Discussionunclassified

“…Debemos señalar que los estudios que se han venido publicando a partir del año 2003 en el ámbito anglosajón en su inmensa mayoría trabajan con más de 100 casos y que en estudios más recientes las cifras superan los 200. De todas formas los pocos estudios publicados en el ámbito español tienen muestras de tamaño similar a la nuestra (2,19) , aunque están empezando a aparecer trabajos con muestras más grandes (15) . En segundo lugar, el hecho de utilizar un envío por correo para la valoración a las 2-3 semanas hace que la muestra que se dispone sea escasa.…”

Section: Discussionunclassified

Efectos de la primera visita de consejo genético sobre la percepción de riesgo y el malestar emocional

2012

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Objective: To analyze how perceived risk and emotional distress were affected by the first visit to a Genetic Counseling Unit in patients with a family history of hereditarian breast cancer, ovarian cancer, or colorectal cancer.Methods: Risk perception of suffering cancer at 1 year, at 10 years, and across the life span, as well as emotional distress (assessed as sadness, anxiety and worries during the last week) was assessed in three moments: before the first visit to the Genetic Counseling Unit, immediately after finishing the visit, and 2-3 weeks after the first visit.Results: Emotional distress prior the first visit was observed in 30% of patients, with higher levels in patients without job. The first visit decreased emotional distress in most cases. However, 34% of patients stated that they were more anxious after the visit, 32% of patients become sadder, and 23% of patients were more worried. Patients who expressed increased levels of emotional distress after the visit were worried about their sons (or sons they wanted to have in the future). In spite of that, this emotional distress decreased at 2-3 weeks. The first visit to a Genetic Counseling Unit decreased risk perception of having cancer across the life span (p<.01), and there were not differences between the three types of cancer. ResumenObjetivo: Analizar los efectos que provoca la primera visita de consejo genético para cán-cer hereditario sobre la percepción de riesgo, y el malestar emocional en pacientes que acuden por primera vez a la Unidad de Consejo Genético (UCG) por historia familiar de cán-cer de mama, ovario o colon hereditario.Método: Se evaluó la percepción de riesgo de padecer cáncer (al año, a 10 años, y a lo largo de toda la vida), y la intensidad del malestar emocional (evaluada como la ansiedad, tristeza y preocupación por la salud experimentadas durante la última semana) en tres ocasiones: inmediatamente antes de la primera visita de consejo genético (CG), inmediatamente después de la misma, y al cabo de 2-3 semanas.Resultados: El malestar emocional previo a la visita se producía en aproximadamente un 30% de los pacientes, siendo mayor en las personas que no realizaban actividad laboral. Si bien la visita de CG reducía el malestar emocional en muchos casos, ocurría lo contrario en algunos pacientes inmediatamente después de la misma (un 34% se sentía más ansioso, un 32% se sentía más triste, y un 23% se sentía más preocupado), y ello guardaba relación con la preocupación por los hijos (tanto si se tenían como si se pretendía tenerlos en el futuro). No obstante, este malestar se reducía en las 2-3

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“…In this example, the service was developed as a response to the growing international awareness of the clinical utility of oncogenetic services to diminish the population impact of cancer, using genetic information to individualize preventive and treatment strategies (Cabrera et al 2010). This sense of urgency that was felt by all relevant actors may be seen as one of the main facilitators in the early phases of deepening the development of services.…”

Section: Hereditary Cancer Program In Catalonia Spainmentioning

confidence: 99%

Developing a framework for implementation of genetic services: learning from examples of testing for monogenic forms of common diseases

Rigter

Henneman

Broerse³

et al. 2014

J Community Genet

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Genetics in health care is shifting, and responsibilities of genetic and nongenetic specialists are changing, requiring new guidance on how to adapt health care to advances in genetic services. This paper explores facilitators and barriers in the process of implementation of innovations in genetic health care. Furthermore, lessons learnt for optimizing development of new genetic services are summarized. Barriers and facilitators in transition processes were identified using mixed methods, including an online open-ended questionnaire among professionals and an international expert meeting. A multi-case study approach was used to explore recent experiences with innovations in genetic services in different phases of implementation. Barriers encountered in transitions in genetic service provision include the following: lack of genetic knowledge and skills among nongenetic health care providers, resistance to new divisions of responsibilities, and a need for more close collaboration and communication between geneticists and nongeneticists. Facilitating factors include the following: statutory registration of genetic specialists, availability of essential staff and equipment, and existence of registries and guidelines. Other challenges are experienced in the establishment of the appropriate legal and financial structures. A set of points to consider for genetic innovation processes is proposed, addressing, e.g., transition management and cooperation and communication strategies.

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The impact of genetic counseling on knowledge and emotional responses in Spanish population with family history of breast cancer

Cited by 28 publications

References 30 publications

Non‐syndromic Sensorineural Prelingual Deafness: The Importance of Genetic Counseling in Demystifying Parents’ Beliefs About the Cause of Their Children's Deafness

Non‐syndromic Sensorineural Prelingual Deafness: The Importance of Genetic Counseling in Demystifying Parents’ Beliefs About the Cause of Their Children's Deafness

Efectos de la primera visita de consejo genético sobre la percepción de riesgo y el malestar emocional

Developing a framework for implementation of genetic services: learning from examples of testing for monogenic forms of common diseases

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