Quality statement 2: Referral after initial hormonal treatment

Quality statement

Women are referred to a gynaecology service if initial hormonal treatment for endometriosis is not effective, not tolerated or contraindicated.

Rationale

Initial hormonal treatment for endometriosis is usually given in primary care after a working diagnosis of endometriosis has been made. Referral to a gynaecology service if this initial hormonal treatment is not effective, not tolerated or contraindicated allows further investigation and treatment options to be explored. This can reduce the possibility of women experiencing significant, prolonged ill health and distress, and improve their quality of life.

Quality measures

Structure

Evidence of local referral pathways to a gynaecology service for women in whom initial hormonal treatment for endometriosis is not effective, not tolerated or contraindicated.

Data source: Local data collection, for example local commissioning agreements and service specifications.

Process

Proportion of women in whom initial hormonal treatment for endometriosis is not effective after 6 months, not tolerated or contraindicated who are referred to a gynaecology service.

Numerator – the number in the denominator who are referred to a gynaecology service.

Denominator – the number of women in whom initial hormonal treatment for endometriosis is not effective after 6 months, not tolerated or contraindicated.

Data source: Local data collection, for example primary care referral records.

Outcome

Satisfaction of women with suspected or confirmed endometriosis with their treatment plan.

Data source: Local data collection, such as patient experience surveys.

What the quality statement means for different audiences

Service providers (such as GP practices and emergency departments) ensure that systems are in place for women to be referred to a gynaecology service if initial hormonal treatment for endometriosis is not effective, not tolerated or contraindicated. Referrals will be made to a general gynaecology service, specialist endometriosis service or paediatric and adolescent gynaecology service depending on the nature of the woman's symptoms, her age and local service provision.

Healthcare professionals (such as GPs and practitioners in emergency departments) are aware of the local referral pathways for women in whom initial hormonal treatment for endometriosis is not effective, not tolerated or contraindicated. They will make referrals to a general gynaecology service, specialist endometriosis service or paediatric and adolescent gynaecology service, depending on the nature of the woman's symptoms, her age and local service provision.

Commissioners (such as clinical commissioning groups and clinical networks) ensure that they commission secondary and tertiary services that include the necessary healthcare professionals to diagnose and treat endometriosis (general gynaecology service, specialist endometriosis service or paediatric and adolescent gynaecology service).

Women with signs and symptoms of endometriosis are referred to a gynaecology service if the symptoms are not relieved by their first hormonal treatment (such as the combined oral contraceptive pill or a progestogen), or if they are not able to have hormonal treatment, for example if they are trying to conceive. They are referred to a general gynaecology service, a specialist endometriosis service, or a paediatric and adolescent gynaecology service, depending on their symptoms, their age and the services that are available in their area.

Source guidance

Endometriosis: diagnosis and management (2017) NICE Guideline NG73, recommendation 1.8.7

Definitions of terms used in this quality statement

Initial hormonal treatment that is not effective

For measurement purposes, a 6-month timescale can be used to decide whether initial hormonal treatment is effective. However, a referral should be made before 6 months if it becomes clear that treatment is not effective.

[Expert opinion]

Gynaecology service

Women can be referred to one of the following services:

  • general gynaecology service

  • specialist endometriosis service (endometriosis centre)

  • paediatric and adolescent gynaecology service.

[Adapted from NICE's guideline on endometriosis, recommendation 1.8.7]

General gynaecology services for women with suspected or confirmed endometriosis

General gynaecology services for women with suspected or confirmed endometriosis have access to:

  • a gynaecologist with expertise in diagnosing and managing endometriosis, including training and skills in laparoscopic surgery

  • a gynaecology specialist nurse with expertise in endometriosis

  • a multidisciplinary pain management service

  • a healthcare professional with an interest in gynaecological imaging

  • fertility services.

[Adapted from NICE's guideline on endometriosis, recommendation 1.1.3]

Specialist endometriosis service (endometriosis centre)

Specialist endometriosis services (endometriosis centres) have access to:

  • gynaecologists with expertise in diagnosing and managing endometriosis, including advanced laparoscopic surgical skills

  • a colorectal surgeon with an interest in endometriosis

  • a urologist with an interest in endometriosis

  • an endometriosis specialist nurse

  • a multidisciplinary pain management service with expertise in pelvic pain

  • a healthcare professional with specialist expertise in gynaecological imaging of endometriosis

  • advanced diagnostic facilities (for example, radiology and histopathology)

  • fertility services.

[Adapted from NICE's guideline on endometriosis, recommendation 1.1.4]

Paediatric and adolescent gynaecology service

Paediatric and adolescent gynaecology services are hospital-based, multidisciplinary specialist services for girls and young women (usually aged under 18).

[NICE's guideline on endometriosis, terms used in this guideline]

Equality and diversity considerations

Transgender men should be referred to gynaecology services if endometriosis is suspected because initial hormonal treatment for endometriosis may be contraindicated. Some transgender men may find it distressing to attend appointments in a women's hospital or dedicated women's unit and may need to be seen in another clinic or setting.

Some services, such as paediatric and adolescent gynaecology services and specialist endometriosis services, may not be available in all local areas. This should not prevent access to appropriate care.