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探索接受个体化黑色素瘤基因组风险信息后的情绪和行为反应:一项定性研究。

Exploring the emotional and behavioural reactions to receiving personalized melanoma genomic risk information: a qualitative study.

机构信息

Cancer Epidemiology and Prevention Research, The University of Sydney, NSW, Australia.

Melanoma Institute Australia (MIA), The University of Sydney, NSW, Australia.

出版信息

Br J Dermatol. 2019 Jun;180(6):1390-1396. doi: 10.1111/bjd.17582. Epub 2019 Mar 4.

DOI:10.1111/bjd.17582
PMID:30580464
Abstract

BACKGROUND

There is a need for greater understanding of the spectrum of emotional and behavioural reactions that individuals in the general population may experience in response to genomic testing for melanoma risk.

OBJECTIVES

To explore how individuals in the general population respond to receiving personalized genomic risk of melanoma.

METHODS

Semistructured interviews were undertaken with 30 participants (aged 24-69 years, 50% female, 12 low risk, eight average risk, 10 high risk) recruited from a pilot trial in which they received personalized melanoma genomic risk information. We explored participants' emotional and behavioural responses to receiving their melanoma genomic risk information. The qualitative data were analysed thematically.

RESULTS

Many participants reported a positive response to receiving their melanoma genomic risk, including feelings of happiness, reassurance and gaining new knowledge to help manage their melanoma risk. Some participants reported short-term negative emotional reactions that dissipated over time. Most individuals, particularly those who received average or high-risk results, reported making positive behaviour changes to reduce their melanoma risk. Emotional and behavioural responses were linked to participants' expectations for their risk result, their pre-existing perception of their own melanoma risk, their existing melanoma preventive behaviours and their genomic risk category.

CONCLUSIONS

Personalized melanoma genomic risk information alongside education and lifestyle counselling is favourably received by people without a personal history and unselected for a family history of melanoma. Participants described increased knowledge and awareness around managing skin cancer risk and improved sun protection and skin examination behaviours. Any initial feelings of distress usually dissipated over time.

摘要

背景

人们需要更深入地了解一般人群在接受黑色素瘤风险基因检测时可能产生的情绪和行为反应。

目的

探究一般人群如何应对接受个人黑色素瘤基因风险。

方法

从一项试点研究中招募了 30 名参与者(年龄 24-69 岁,女性占 50%,12 名低危,8 名中危,10 名高危)进行半结构式访谈。参与者接受了个人黑色素瘤基因风险信息。我们探究了参与者对接受黑色素瘤基因风险信息的情绪和行为反应。对定性数据进行了主题分析。

结果

许多参与者对接受黑色素瘤基因风险持积极态度,包括感到高兴、安心,并获得了新知识来帮助管理黑色素瘤风险。一些参与者报告了短期的负面情绪反应,随着时间的推移而消散。大多数人,特别是那些接受中危或高危结果的人,报告说做出了积极的行为改变来降低黑色素瘤风险。情绪和行为反应与参与者对风险结果的预期、他们对自己黑色素瘤风险的预先感知、他们现有的黑色素瘤预防行为以及他们的基因风险类别有关。

结论

对于没有个人病史且没有家族史的人,提供个性化的黑色素瘤基因风险信息以及教育和生活方式咨询,是受欢迎的。参与者描述了在管理皮肤癌风险方面的知识和意识增强,以及防晒和皮肤检查行为的改善。任何最初的不适情绪通常随着时间的推移而消散。

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