• Attitudes towards a programme of risk assessment and stratified management for ovarian cancer: a focus group study of UK South Asians' perspectives

      Hann, Katie E.J.; Ali, Nasreen; Gessler, Sue; Fraser, Lindsay Sarah Macduff; Side, Lucy; Waller, Jo; Sanderson, Saskia C.; Lanceley, Anne; Royal Holloway, University of London; University of Bedfordshire; et al. (BMJ, 2018-07-18)
      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. 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. CONCLUSIONS OBJECTIVE DESIGN SETTING PARTICIPANTS METHODS RESULTS
    • “Health Party” intervention on genetic testing for ethnic minority women: study protocol

      Kabeya, Valencia; Puthussery, Shuby; Furmanski, Anna L. (Oxford University Press, 2019-11-20)
      Background Culturally appropriate interventions are needed to improve the uptake of genetic counselling and testing among ethnically diverse communities. This study aims to assess the feasibility and preliminary effectiveness of a “Health Party” intervention to increase awareness, knowledge and uptake of genetic testing for breast and ovarian cancer among ethnic minority women in the UK. Methods The “Health Party” intervention will include an educational session in a party setting. Participants will be taught by professionals about genetic testing and how to access genetic testing services in the UK National Health Service. We will recruit a sample of 60 women aged 18 years and over from key ethnic minority groups in the UK (Black African, Black Caribbean, Indian, Pakistani, Bangladeshi) and will conduct four community based sessions, each with about 15 participants. The outcomes will primarily relate to recruitment and attrition rates, data collection, study resources and intervention delivery. A quantitative pre-post evaluation with measurements before, shortly after, and at 6 months following the intervention will be conducted to assess the preliminary effectiveness on awareness, knowledge and uptake of genetic testing. We will use three way mixed analysis of variance (MANOVA) to analyse changes pre- and post- intervention. The fidelity of the intervention including facilitation strategies, quality of delivery and participant response will be assessed. Conclusions Findings will establish the feasibility of the intervention and will provide insights into its effectiveness to increase the awareness, knowledge and uptake of genetic testing for breast and ovarian cancer among women from ethnic minority groups in the UK. Impact: Depending on its feasibility and effectiveness, the intervention can be used to help women from ethnic minority groups to make informed choices about genetic testing and improve early diagnosis and treatment of breast and ovarian cancer. Key messages “Health Party” may be a feasible intervention for ethnic minority women in the UK. “Health Party” intervention may increase awareness, knowledge and uptake of services.