Ovarian cancer

  • Quality standard
  • QS18
  • Published: 
  • Last updated: 
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Quality statement 1: Discussion about risk-reducing surgery

Quality statement

Adults with a 5% or more total lifetime risk of developing ovarian cancer have a discussion about risk-reducing surgery. [new 2025]

Rationale

Risk-reducing surgery is the most reliable way of substantially reducing the likelihood of developing ovarian cancer in adults who have a 5% or more total lifetime risk. It is important that adults are supported to make informed decisions. This could be through discussion of genetics, cancer risk, and the impact of surgery (on reproductive choices and fertility and, in premenopausal adults, the impact of surgical menopause), including its benefits and risks. This will facilitate informed and shared decision making.

Quality measures

The following measure can be used to assess the quality of care or service provision specified in the statement. It is an example of how the statement can be measured, and can be adapted and used flexibly.

Process

Proportion of adults who have a 5% or more total lifetime risk of developing ovarian cancer who have a documented discussion about risk-reducing surgery.

Numerator – the number in the denominator who have a documented discussion about risk-reducing surgery.

Denominator – the number of adults who have a 5% or more total lifetime risk of developing ovarian cancer.

Data source: Data can be collected from information recorded locally by healthcare professionals and provider organisations, for example, from patient records, clinical genetics records or records from gynaecology oncology multidisciplinary team meetings.

What the quality statement means for different audiences

Service providers (such as secondary and tertiary gynaecology and genetics services) ensure that healthcare professionals are trained to discuss risk-reducing surgery with adults who have a 5% or more total lifetime risk of developing ovarian cancer. They ensure that healthcare professionals in these services are trained in shared decision making and information provision, which relates to genetics, cancer risk, reproductive choices, fertility, menopause (for premenopausal adults), and the benefits and risks of surgery. They also work with the National Disease Registration Service (NDRS) to ensure that genetic variants and family history are coded, to populate the NDRS's germline molecular data set.

Healthcare professionals (such as clinical nurse specialists, gynaecologists, geneticists and genetic counsellors) discuss risk-reducing surgery with adults when a 5% or more total lifetime risk of developing ovarian cancer has been identified. They attend training on shared decision making and information provision, which relates to genetics, cancer risk, reproductive choices, fertility, menopause (for premenopausal adults), and the benefits and risks of surgery. To facilitate discussion of risk-reducing surgery, they also provide information and support.

Commissioners ensure that they commission services that provide risk-reducing surgery for adults with a 5% or more total lifetime risk of developing ovarian cancer. They should ensure that services provide an opportunity to discuss genetics, cancer risk, reproductive choices, fertility, menopause (for premenopausal adults), and the risks and benefits of surgery, and provide information and support, to aid shared decision making.

Adults with an increased risk of ovarian cancer discuss risk-reducing surgery. This includes healthcare professionals discussing with them genetics, cancer risk and the benefits, impact and risks of surgery. They are given information and support to facilitate this discussion and shared decision making.

Definitions of terms used in this quality statement

Discussion about risk-reducing surgery

Topics, including information and support to aid shared decision making, are provided in NICE's guideline on ovarian cancer, table 1 (information and support about familial ovarian cancer in all settings), table 2 (information and support about risk assessment and genetic testing in genetics services) and table 3 (information and support in specialist services).

When discussing risk-reducing bilateral salpingo-oophorectomy surgery with adults who are premenopausal, specialist menopause counselling should be offered before (and after) surgery. [NICE's guideline on ovarian cancer: identifying and managing familial and genetic risk, recommendations 1.8.1, 1.8.3 and 1.8.4]

5% or more total lifetime risk

This is calculated on the basis of:

  • a pathogenic variant (presence of a genetic alteration that increases susceptibility or predisposition to a certain disease or disorder, or 'likely pathogenic variant', which is a variant with strong evidence that suggests it is associated with an increased risk of ovarian cancer) associated with familial ovarian cancer, or

  • a strong family history of ovarian cancer (1 or more first-degree relatives, for example, a grandmother, sister or daughter, on the same side of their family) with ovarian cancer.

NICE's guideline on ovarian cancer, recommendations 1.6.3 and 1.6.5, describe how the risk of developing ovarian cancer is assessed. [NICE's guideline on ovarian cancer: identifying and managing familial and genetic risk, recommendations 1.6.3 and 1.6.5, 1.8.1, and glossary (pathogenic variant and strong family history of ovarian cancer)]

Risk-reducing surgery

Risk-reducing surgery could include:

  • bilateral salpingo-oophorectomy, a surgical procedure to remove both (bilateral) fallopian tubes (salpingectomy) and the ovaries (oophorectomy)

  • hysterectomy with bilateral salpingo-oophorectomy (to reduce the risk of endometrial cancer as well as ovarian cancer).

[NICE's guideline on ovarian cancer: identifying and managing familial and genetic risk, table 5, recommendations 1.8.6 to 1.8.11, and glossary]