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Family History and Women With Ovarian Cancer: Is it Asked and Does it Matter?
  1. Anne Lanceley, BA (Hons), DipN, PGDE, PhD*,
  2. Zara Eagle, BSc,
  3. Gemma Ogden,
  4. Sue Gessler, BA, MSc, PhD§,
  5. Khalil Razvi, MMED, FAMS FRCOG,
  6. Jonathan A. Ledermann, BSc, MD, FRCP∥¶ and
  7. Lucy Side, MD, MRCP(UK), MBChB*
  1. *UCL EGA Institute for Women’s Health, Department of Women’s Cancer Research, University College London;
  2. Institute of Clinical Education, Warwick Medical School, and MedicalTeaching Centre, University of Warwick, Coventry;
  3. Women’s Clinic, Southend University Hospital NHS Foundation Trust, Essex; and
  4. §Gynaecological Cancer Centre, University College London Hospital NHS Foundation Trust and
  5. ∥¶Cancer Research UK and UCL Cancer Trials Centre, UCL Cancer Institute, University College London, UK.
  1. Address correspondence and reprint requests to: Anne Lanceley, UCL EGA Institute for Women’s Health, Department of Women’s Cancer Research, University College London, 74, Huntley St, London, UK WC1E 6AU. E-mail: a.lanceley@ucl.ac.uk.

Abstract

Objective The objective of the study was to determine how many women in an ovarian cancer (OC) study cohort had a family history (FH) recorded in their case notes and whether appropriate action was taken on the basis of that FH.

Methods This was a review of patient case-note data of women in a randomized controlled trial of follow-up after primary treatment for OC. Available case notes of 114 women recruited at 3 UK gynecologic cancer centers in a 2-year period between January 2006 and 2008 were examined. Case-note entries for the period from first hospital consultation to 2 years after completion of primary treatment were included. Outcome measures were (1) recording of an FH of cancer in the case notes, (2) whether appropriate action had been taken on the basis of the FH in those women with affected relatives, and (3) characterizing insufficient FH records.

Results Family history was not consistently recorded. Although FH was recorded in the majority of women, 14 women had no FH recorded. In 63 women, the FH was recorded as not significant, and in 15 cases, FH information was insufficient to complete a risk assessment. Twenty-two women had significant FH meeting criteria for specialist genetics referral. In 15 of these 22 cases, the relevant history suggestive of hereditary breast cancer and OC (due to BRCA1 or BRCA2 mutations) or Lynch syndrome had been documented, but no action was recorded, and its significance was not appreciated.

Conclusions These data indicate that training in recognizing relevant FH is needed for clinicians looking after women with OC. Research is necessary to determine the barriers in taking and interpreting an FH and to determine the optimal time for broaching FH issues during a woman’s care pathway. This will improve the accuracy of FH recording and ensure families with OC have access to appropriate surveillance and genetic testing.

  • Ovarian cancer
  • Family history
  • BRCA1
  • BRCA2

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Footnotes

  • This work was part funded by the Eve Appeal Gynaecological Cancer Charity.

  • A major portion of the work was done at UCLH/UCL within the “women’s health theme” of the NIHR UCLH/UCL Comprehensive Biomedical Research Centre supported by the Department of Health.

  • The authors declare that there are no conflicts of interest.

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