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How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

ABSTRACT: The uptake of predictive DNA testing in families with a hereditary disease is <50%. Current practice often relies on the proband to inform relatives about the possibility of predictive DNA testing, but not all relatives are informed adequately. To enable informed decision-making concerning predictive DNA testing, the approach used to inform at-risk relatives needs to be optimized. This study investigated the preferences of patients, relatives, and the general population from the Netherlands on how to inform relatives at risk of autosomal dominant diseases. Online surveys were sent to people with autosomal dominant neuro-, onco-, or cardiogenetic diseases and their relatives via patient organizations (n = 379), and to members of the general population via a commercial panel (n = 1,000). Attitudes of the patient and population samples generally corresponded. A majority believed that initially only first-degree relatives should be informed, following the principles of a cascade screening approach. Most participants also thought that probands and healthcare professionals (HCPs) should be involved in informing relatives, and a large proportion believed that HCPs should contact relatives directly in cases where patients are unwilling to inform, both for untreatable and treatable conditions. Participants from the patient sample were of the opinion that HCPs should actively offer support. Our findings show that both patients and HCPs should be involved in informing at-risk relatives of autosomal dominant diseases and suggest that relatives' 'right to know' was considered a dominant issue by the majority of participants. Further research is needed on how to increase proactive support in informing of at-risk relatives.

SUBMITTER: Marleen van den Heuvel L

PROVIDER: S-EPMC7649718 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

Marleen van den Heuvel Lieke L Stemkens Daphne D van Zelst-Stams Wendy A G WAG Willeboordse Floor F Christiaans Imke I

Journal of genetic counseling 20191230 5

The uptake of predictive DNA testing in families with a hereditary disease is <50%. Current practice often relies on the proband to inform relatives about the possibility of predictive DNA testing, but not all relatives are informed adequately. To enable informed decision-making concerning predictive DNA testing, the approach used to inform at-risk relatives needs to be optimized. This study investigated the preferences of patients, relatives, and the general population from the Netherlands on h ...[more]

PMID: 31889383

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Project description:BackgroundPositive health beliefs and attitudes towards dementia and dementia risk reduction may encourage adopting a healthy behaviour. Therefore, we aimed to investigate the knowledge, health beliefs and attitudes towards dementia and dementia risk reduction among the Dutch general population and its association with the intention to change health behaviours.MethodsA random sample of Dutch residents (30 to 80 years) was invited to complete an online survey. We collected data on knowledge, health beliefs and attitudes towards dementia (risk reduction) and the intention to change health behaviours. Multivariable logistic regression analyses were used to obtain effect estimates.ResultsSix hundred fifty-five participants completed the survey. In general, participants had insufficient knowledge about dementia and dementia risk reduction. Participants had relatively high scores on general health motivation and perceived benefits, but low scores on perceived susceptibility, perceived severity, perceived barriers, cues to action and self-efficacy. Individuals with higher scores on perceived benefits and cues to action had more often the intention to change their behaviour with regard to physical activity (OR = 1.33, 95%-CI:1.11-1.58; OR = 1.13, 95%-CI:1.03-1.24, respectively) and alcohol consumption (OR = 1.30, 95%-CI:1.00-1.69; OR = 1.17, 95%-CI:1.02-1.35, respectively). Younger excessive alcohol consumers with higher perceived severity scores had more often the intention to change their alcohol consumption behaviour (OR = 2.70, 95%-CI:1.04-6.97) compared to older excessive alcohol consumers. Opposite results were found for middle-aged excessive alcohol consumers (OR = 0.81, 95%-CI:0.67-0.99). Individuals who perceived more barriers had more often the intention to change their diet (OR = 1.10, 95%-CI:1.01-1.21), but less often the intention to change their smoking behaviour (OR = 0.78, 95%-CI:0.63-0.98). Moreover, less educated individuals with higher perceived benefits scores had less often the intention to change their diet (OR = 0.78, 95%-CI:0.60-0.99), while highly educated individuals with higher perceived benefits scores had more often the intention to change their diet (OR = 1.41, 95%-CI:1.12-1.78).ConclusionsThe knowledge, beliefs and attitudes towards dementia and dementia risk reduction among the Dutch general population is insufficient to support dementia risk reduction. More education about dementia and dementia risk reduction is needed to improve health beliefs and attitudes towards dementia and dementia risk reduction in order to change health behaviour.

Dataset Information

How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

Publications

How to inform at-risk relatives? Attitudes of 1379 Dutch patients, relatives, and members of the general population.

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