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Attitudes towards a programme of risk assessment and stratified management for ovarian cancer: a focus group study of UK South Asians’ perspectives
  1. Katie E J Hann1,2,
  2. Nasreen Ali3,
  3. Sue Gessler1,
  4. Lindsay Sarah Macduff Fraser1,
  5. Lucy Side1,4,
  6. Jo Waller5,
  7. Saskia C Sanderson5,6,
  8. Anne Lanceley1
  9. for the PROMISE study team
  1. 1 Department of Women’s Cancer, EGA UCL Institute for Women’s Health, University College London, London, UK
  2. 2 Health Psychology Research Unit, Royal Holloway, University of London, Egham, UK
  3. 3 Institute for Health Research, University of Bedfordshire, Luton, UK
  4. 4 Department of Clinical Genetics, University Hospital Southampton NHS Foundation Trust, Southampton, UK
  5. 5 Department of Behavioural Science and Health, Institute of Epidemiology and Health Care, University College London, London, UK
  6. 6 Department of Clinical Genetics, Great Ormond Street Hospital, London, UK
  1. Correspondence to Dr Anne Lanceley; a.lanceley{at}ucl.ac.uk

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.

  • ovarian cancer
  • genetic testing
  • risk assessment
  • risk stratification
  • risk management

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Footnotes

  • Contributors Authors KEJH, NA, LSMF, LS, JW, SCS and AL contributed to the design of the study including refinement of the discussion guide. AL was overall responsible for the delivery of the project. NA and KEJH recruited participants and conducted the seven focus group discussions. KEJH analysed the data and NA and AL checked the data for any divergent cases. Independent researcher SG performed coding checks on a proportion of the data. Authors KEJH, NA, LSMF, LS, JW, SCS, SG and AL contributed to interpretation of the results. KEJH drafted the manuscript and authors KEJH, NA, LSMF, LS, JW, SCS, SG and AL critically reviewed and approved the manuscript.

  • Funding This work was supported by The Eve Appeal (509050) and Cancer Research UK (C1005/A12677).

  • Disclaimer The funders had no role in the study design; collection, management, analysis or interpretation of data; writing of the report or the decision to submit the report for publication.

  • Competing interests None declared.

  • Patient consent Not required.

  • Ethics approval Approval to conduct the study was granted by the UCL Research Ethics Committee (project ID: 8053/003).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Anonymised qualitative data are available on request.

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