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

Hann KEJ1,2, Ali N3, Gessler S1, Fraser LSM1, Side L1,4, Waller J5, Sanderson SC5,6, Lanceley A1; PROMISE study team.

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Abstract

OBJECTIVE:

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.

DESIGN:

Semistructured qualitative focus group discussions.

SETTING:

Community centres across North London and Luton.

PARTICIPANTS:

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.

METHODS:

Seven community-based focus groups were held. Group discussions were transcribed verbatim, coded and analysed thematically.

RESULTS:

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:

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.