A Focus Group Study of Perceptions of Genetic Risk Disclosure in Members of the Public in Sweden: “I’ll Phone the Five Closest Ones, but What Happens to the Other Ten?”

Hawranek, Carolina; Hajdarević, Senada; Rosén, Anna

doi:10.3390/jpm11111191

Cited by 10 publications

(4 citation statements)

References 57 publications

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“…This study protocol will be available open access. All previous instructions in Swedish have been publicly available online at the study webpage [ 15 ] since 2020 March 26. Individual participant-level data is not possible to disclose due to confidentiality requirements, but access to aggregated data and statistical code may be granted upon reasonable request to the principal investigator.…”

Section: Methodsmentioning

confidence: 99%

Direct letters to relatives at risk of hereditary cancer—study protocol for a multi-center randomized controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study)

Hawranek,

Ehrencrona,

Öfverholm

et al. 2023

Trials

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Background The results of germline genetic testing for hereditary cancer are of importance not only to the patients under investigation but also to their genetic at-risk relatives. Standard care is to encourage the proband (first family member under investigation) to pass on this risk information to the relatives. Previous research suggests that with family-mediated disclosure, only about a third of at-risk relatives contact health care to receive genetic counselling. In some studies, complementing family-mediated risk disclosure with healthcare-assisted risk disclosure almost doubles the uptake of genetic counselling in at-risk relatives. In this study, we evaluate healthcare-assisted direct letters to relatives at risk of hereditary cancer syndromes in a randomized controlled trial. Methods Probands are recruited from Swedish outpatient cancer genetics clinics to this two-arm randomized controlled trial. The study recruits probands with either a pathogenic variant in a cancer susceptibility gene (BRCA1, BRCA2, PALB2, MLH1, MSH2, MSH6, PMS2) or probands with familial breast and colorectal cancer based on clinical and pedigree criteria. In both arms, probands receive standard care, i.e., are encouraged and supported to pass on information to relatives. In the intervention arm, the proband is also offered to have direct letters sent to the at-risk relatives. The primary outcome measure is the proportion of at-risk relatives contacting a Swedish cancer genetics clinic within 12 months of the proband receiving the test results. Discussion This paper describes the protocol of a randomized controlled clinical trial evaluating a healthcare-assisted approach to risk disclosure by offering the probands to send direct letters to their at-risk relatives. The results of this study should be informative in the future development of risk disclosure practices in cancer genetics clinics. Trial registration ClinicalTrials.gov. Identifier NCT04197856 (pre-trial registration on December 13, 2019). Also registered at the website “RCC Cancerstudier i Sverige” as study #86719.

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Section: Methodsmentioning

confidence: 99%

Direct letters to relatives at risk of hereditary cancer—study protocol for a multi-center randomized controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study)

Hawranek,

Ehrencrona,

Öfverholm

et al. 2023

Trials

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“…In the preparations for the trial outlined in this paper, we have conducted both qualitative and quantitative studies and an ethical analysis on hereditary cancer risk disclosure (10)(11)(12). Informed by our preparatory work and in collaboration between representatives of involved study sites, we drafted a study protocol for evaluating direct contact with ARRs at Swedish cancer genetics clinics.…”

Section: Introductionmentioning

confidence: 99%

Direct letters to relatives at risk of hereditary cancer – study protocol for a multi-centre randomised controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study)

Hawranek

Ehrencrona

Öfverholm

et al. 2023

Preprint

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Background: The results of genetic investigation for hereditary cancer are of importance to the individual patients, but also to their genetic at-risk relatives. Standard care is to encourage the proband (first family member under investigation) to pass on this risk information to the relatives. Previous research suggests that with family-mediated disclosure only about a third of at-risk relatives contact health care to receive genetic counselling. In some studies, complementing family-mediated risk disclosure with healthcare-assisted risk disclosure almost doubles the uptake of genetic counselling in at-risk relatives. In this study we evaluate healthcare-assisted direct letters to relatives at risk of hereditary cancer syndromes in a randomised controlled trial. Methods: Probands are recruited from Swedish outpatient cancer genetics clinics to this two-arm randomised controlled trial. The study recruits probands with either a pathogenic variant in a cancer susceptibility gene (BRCA1, BRCA2, PALB2, MLH1, MSH2/EPCAM, MSH6, PMS2) or probands with familial breast and colorectal cancer based on clinical and pedigree criteria. In both arms probands receive standard care, i.e., are encouraged and supported to pass on information to relatives. In the intervention arm, the proband is also offered to have direct letters sent to the at-risk relatives. The primary outcome measure is the proportion of at-risk relatives contacting a Swedish cancer genetics clinic within 12 months of the proband receiving the test results. Discussion: This paper describes the protocol of a randomised controlled clinical trial evaluating a healthcare-assisted approach to risk disclosure by offering the probands to send direct letters to their at-risk relatives. The results of this study should be informative in the future development of risk disclosure practices in cancer genetics clinics. Trial registration; ClinicalTrials.gov Identifier NCT04197856 (pre-trial registration on December 13, 2019). • https://clinicaltrials.gov/ct2/show/NCT04197856?id=NCT04197856&draw=2&rank=1&load=cart Also registered at the website “RCC Cancerstudier i Sverige” as study #86719).

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“…En el caso de la distribución por Facebook, se utilizó una página de anuncio de pago que configuró con una segmentación detallada del público objetivo (entretenimiento -periódicos -últimas noticias), donde se obtuvieron 116 "Me gusta". En relación con el grupo de discusión, se eligió un grupo heterogéneo de ocho personas entre 20 y 68 años, todas ellas mayores de edad, residentes en la ciudad de Pamplona (Navarra, España) y con diversas ocupaciones, con el objetivo de conseguir una representatividad tanto de un arco de edad amplio como de diferente contexto vital, atendiendo a los criterios señalados por Hawranek et al (2021). Estudios previos indican que una cifra menor a siete personas podría comprometer el contraste de opiniones y que la participación de más de diez personas podría suponer una fragmentación de los temas a debatir (Prieto y Cerdá, 2002;Krueger y Casey, 2002).…”

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Percepción social del suicidio en los medios de comunicación españoles: un estudio cualitativo

Olivar-Julián,

Azurmendi Adarraga

2024

Pacla

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El número de fallecimientos por suicidio en España en 2020, año de la irrupción de la Covid-19, ha sido el más alto registrado hasta la fecha, muy por encima del número de víctimas mortales por accidentes de tráfico, que han supuesto menos de la mitad que las de suicidios. Con estos datos, parecería razonable que la sociedad estuviera informada sobre este grave problema de salud pública o, cuando menos, que se informara más de los casos de suicidio que de los accidentes de tráfico. Pero esto no es así. El objetivo del artículo es obtener evidencias sobre cómo perciben los ciudadanos la información existente en los medios de comunicación y las redes sociales sobre el suicidio. Para llevar a cabo la investigación se realizó una encuesta a través de la plataforma Google y se preparó un grupo de discusión utilizando la metodología habitual para los grupos focales. Los resultados revelan que, a juicio de las personas encuestadas o entrevistadas, los medios no suelen informar sobre el suicidio y, cuando lo hacen, se abusa habitualmente del morbo y del sensacionalismo, por lo que se debería contar con la ayuda de expertos, formar a los periodistas y considerar la utilización de un enfoque preventivo. También se han detectado diferentes visiones sobre el suicidio en los medios de comunicación por parte de los menores y los mayores de 40 años, siendo los más jóvenes los que más han insistido en la necesidad de una educación para el consumo mediático y para afrontar el tratamiento que se da al suicidio en redes sociales.

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A Focus Group Study of Perceptions of Genetic Risk Disclosure in Members of the Public in Sweden: “I’ll Phone the Five Closest Ones, but What Happens to the Other Ten?”

Cited by 10 publications

References 57 publications

Direct letters to relatives at risk of hereditary cancer—study protocol for a multi-center randomized controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study)

Direct letters to relatives at risk of hereditary cancer—study protocol for a multi-center randomized controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study)

Direct letters to relatives at risk of hereditary cancer – study protocol for a multi-centre randomised controlled trial of healthcare-assisted versus family-mediated risk disclosure at Swedish cancer genetics clinics (DIRECT-study)

Percepción social del suicidio en los medios de comunicación españoles: un estudio cualitativo

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