Premature ovarian insufficiency – are the latest guidelines enough?

The European Society of Human Reproduction and Embryology (ESHRE) has released updated guidelines for managing premature ovarian insufficiency (POI) replacing the 2016 guidelines.

These new guidelines offer a standardised approach to diagnosing and treating POI that is rooted in both patient-centred and evidence-based care and provide a holistic framework for managing patients with POI.

POI, previously known as premature ovarian failure and now referred to as premature menopause, is a condition where ovarian function declines before the age of 40 (see BioNews 1225). The condition differs from menopause which occurs at the expected age, not only because of the younger age of onset but also because ovarian function can be intermittent, making a pregnancy possible in some cases.

POI also has both short- and long-term health implications that differ from those associated with menopause at the expected age. Women with POI can also experience a variety of symptoms associated with the menopause.

Although they are not widely recognised as being associated with POI, mood changes are the most common reported symptom highlighted in the new guidelines.

The updated guidelines provide a fresh review, detailing evidence-based updates on diagnosis, treatment and patient care, by addressing 40 key questions through 145 recommendations using a combination of statements, key practice points and clinical evidence.

What has changed?

Unlike the previous guidelines, the updated guidelines emphasise the importance of a timely diagnosis of POI using a combination of clinical features, including a thorough clinical history and blood testing (elevated FSH of >25IU/l remains unchanged). The guidelines continue to outline the importance of repeating the blood tests four to six weeks later for reliability.

The updated guidelines also state that, whereas in the past one percent of women were thought to have POI (as stated in the previous guidelines), recent research suggests this figure is now closer to 3.5 percent. This increase is thought to be for a variety of reasons including patients being more informed and aware of POI, meaning they are more likely to seek a diagnosis, and an increase in young people surviving childhood cancers (previous chemotherapy treatment may put this group of patients at risk of developing POI).

The new guidelines also highlight the importance of avoiding delays in starting hormone treatment for women with POI. This may have a huge impact on the practicalities of diagnosis and treatment of POI. Due to long waiting lists in gynaecological care, it is important that healthcare professionals working in primary care are familiar with POI and the new guidelines, so they are able to support newly diagnosed patients with starting hormone treatment while they are waiting to access a specialist POI clinic.

The guidelines remain a holistic tool for practitioners, focusing not just on diagnosis, treatment and fertility options, but also the importance of preventative care. This includes regular health checks and the importance of regular assessments to review both cardiac and bone health in POI patients.

It is also important to be aware that other conditions have been associated with an increased risk of POI. These include, but are not limited to, polycystic ovarian syndrome and Addison's disease.

Why do these guidelines matter?

POI is not just about fertility options, although fertility options may be important part of treatment for some individuals. The updated guidelines now include a deeper dive into the importance of monitoring long-term health risks, such as cardiovascular disease, osteoporosis and mental health impacts.

Another key change to the guidelines is the focus on the psychological impact of POI. The new recommendations are to offer an assessment of psychological health and quality of life for all women with POI, highlighting the need for mental health resources and counselling to support emotional well-being. This reflects a shift towards patient-centred care that considers the emotional and social dimensions of living with POI.

Going forward, are there blocks in the road?

Supporting patients with POI remains a significant challenge due in particular to a lack of resources and dedicated specialist clinics, which limits access to dedicated medical support.

Additionally, there remains a lack of training in POI for healthcare professionals resulting in delays in diagnosis, often because symptoms may be misinterpreted or overlooked, leading to patients feeling dismissed or not listened to. Patients with POI frequently encounter barriers when seeking a diagnosis

There remains a lack of specialist trained counsellors who are familiar with the unique psychological impact of POI and are able to support women with the condition. These gaps in care can leave many patients feeling isolated, without guidance or the treatment that they need to navigate POI.

While the new guidelines are a welcome addition to support the diagnosis and treatment of POI, unless these wider infrastructure and resource factors are addressed their effectiveness may be hindered.

The road ahead

As a healthcare professional and POI researcher, I believe the future for improved POI care relies on more research to better understand the condition, its causes, and its impact on women's health and lives. Listening and responding to patients' experiences of navigating the condition is essential as their insights can help us learn to make improvements in diagnosis, treatment and support services.

The NHS has an opportunity to embrace a multidisciplinary approach to POI care, by integrating a range of specialist services under one roof, such as endocrinology, fertility specialists, gynaecologists, counsellors and dieticians, thus easily accessible to POI patients to provide the much-needed ongoing comprehensive care for women with POI throughout their lives.

POI is not just about getting a diagnosis, taking hormone treatment and talking about fertility options. It is a lifelong condition that requires ongoing specialist support and management. These specialist guidelines provide both clinicians and patients with a comprehensive evidence-based tool that can be used to support patients at any stage of the journey.

However, the question remains as to whether these recommendations are realistic in our current healthcare system? Ongoing resource and infrastructure issues including gynaecology waiting lists being longer than ever, and a shortage of trained counsellors specialising in POI, may mean that even if patients are able to access the new guidelines, significant improvements to diagnosis and care may remain out of reach.