Hann Katie E J, Ali Nasreen, Gessler Sue, Fraser Lindsay Sarah Macduff, Side Lucy, Waller Jo, Sanderson Saskia C, Lanceley Anne
Department of Women's Cancer, EGA UCL Institute for Women's Health, University College London, London, UK.
Health Psychology Research Unit, Royal Holloway, University of London, Egham, UK.
BMJ Open. 2018 Jul 18;8(7):e021782. doi: 10.1136/bmjopen-2018-021782.
Population-based risk assessment, using genetic testing and the provision of appropriate risk management, could lead to prevention, early detection and improved clinical management of ovarian cancer (OC). Previous research with mostly white British participants found positive attitudes towards such a programme. The current study aimed to explore the attitudes of South Asian (SA) women and men in the UK with the aim of identifying how best to implement such a programme to minimise distress and maximise uptake.
Semistructured qualitative focus group discussions.
Community centres across North London and Luton.
49 women and 13 men who identified as SA (Indian, Pakistani or Bangladeshi), which constitutes the largest non-European ethnic minority group in the UK.
Seven community-based focus groups were held. Group discussions were transcribed verbatim, coded and analysed thematically.
Awareness and knowledge of OC symptoms and specific risk factors was low. The programme was acceptable to most participants and attitudes to it were generally positive. Participants' main concerns related to receiving a high-risk result following the genetic test. Younger women may be more cautious of genetic testing, screening or risk-reducing surgery due to the importance of marriage and childbearing in their SA cultures.
A crucial first step to enable implementation of population-based genetic risk assessment and management in OC is to raise awareness of OC within SA communities. It will be important to engage with the SA community early on in programme implementation to address their specific concerns and to ensure culturally tailored decision support.
通过基因检测进行基于人群的风险评估并提供适当的风险管理，可能会实现卵巢癌（OC）的预防、早期检测及改善临床管理。此前针对主要为英国白人参与者的研究发现，他们对此类项目持积极态度。本研究旨在探讨英国南亚（SA）女性和男性的态度，以确定如何最好地实施此类项目，从而将痛苦降至最低并最大程度提高参与率。
半结构化定性焦点小组讨论。
伦敦北部和卢顿的社区中心。
49名女性和13名男性，他们自认为是南亚人（印度人、巴基斯坦人或孟加拉国人），这是英国最大的非欧洲少数族裔群体。
举办了7次基于社区的焦点小组讨论。小组讨论内容逐字记录、编码并进行主题分析。
对OC症状和特定风险因素的认识和了解程度较低。该项目为大多数参与者所接受，他们对此的态度总体上是积极的。参与者主要担心基因检测后得到高风险结果。由于婚姻和生育在他们的南亚文化中很重要，年轻女性可能对基因检测、筛查或降低风险的手术更为谨慎。
在南亚社区提高对OC的认识是在OC中实施基于人群的基因风险评估和管理的关键第一步。在项目实施早期与南亚社区接触，以解决他们的具体担忧并确保提供符合文化背景的决策支持非常重要。
