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Survey calls for renaming of PCOS to better reflect condition

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A global survey is underway to rename polycystic ovary syndrome (PCOS) to better reflect the condition and its impact on millions of women worldwide.

PCOS can cause a variety of symptoms including hormonal imbalances, excessive androgen levels – male hormones also produced in smaller amounts by women – and irregular periods, and is a leading cause of infertility.

The name has been labelled misleading, as research has confirmed the “cysts” on the ovaries are actually small fluid-filled sacs – underdeveloped egg follicles not released as expected during the menstrual cycle.

Women’s health professor Helena Teede said PCOS was “one of the most neglected, poorest understood conditions”.

She said: “It’s not just about the ovaries, it’s actually a hormonal condition.

“As a clinician, what I was seeing was the condition wasn’t being diagnosed, getting appropriate attention, prevention or treatment, research or education, and it was really challenging for those people who are affected.”

The renaming initiative is driven by the nationally funded Centre for Research Excellence in Women’s Health in Reproductive Life at Monash University.

The current survey, which has garnered more than 6,500 responses so far, offers three different approaches: keeping the acronym PCOS but changing the words each letter represents; creating a new name that better reflects the pathology and symptoms; or finding a generic name.

Once a consensus is reached, the ultimate goal is to have the name changed in the International Classification of Diseases.

Caitlin Videon was diagnosed with PCOS when she was 16.

She experienced a swathe of symptoms, including excessive hair growth, weight gain, depression and suicidal ideation.

After living with PCOS for two decades, the 36-year-old – who has also been diagnosed with endometriosis and adenomyosis – said trying to explain the condition was difficult.

She said: “I’ve even struggled to articulate it to doctors who have as part of their bio they’re well-versed in female reproductive conditions and issues.

“The name change will help capture how significant and intricate the disease can be when we’re talking about the entire female body.”

Riverland-based accredited dietician Felicity Morrell said she saw women every week with PCOS who were “just banging their heads against the wall with conflicting information and unsure of where to go”.

She said: “A lot of clients have said to me the title can be a little bit confusing.

“I think having a title that gives a better indication as to the scope of issues these ladies are trying to deal with could be really helpful.”

The global survey is open until the end of August.

Professor Teede said there was already a consensus from those working in the field that the name needed to change, and there was no scenario where the name change would not happen.

She said: “The aim is to finish the formal process by the end of the year and then to look at the dissemination strategies early next year.

“There’s a strategy that goes across about 15 different ways of implementing. But the ultimate one is changing the name.

“We are very excited, especially on behalf of those who are affected, and really looking forward to the positive changes that will come because of it.”

Pregnancy

Home blood pressure checks could lower heart risks for new mothers – study

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Home blood pressure checks after hypertensive pregnancy could cut the risk of heart attack, stroke and potentially early death, research suggests.

Women who regularly monitored their blood pressure in the weeks after giving birth, and had doctors tailor their medication if needed, had better functioning arteries nine months later than those who received routine care.

When the medication was adjusted to account for blood pressure changes, the women ended up with less stiff arteries, an effect researchers estimated could reduce the future risk of heart attack or stroke by 10 per cent.

Paul Leeson, professor of cardiovascular medicine who led the study, said the findings suggested that the weeks after birth provided a “powerful and often overlooked opportunity” to protect women’s future health.

“By simply monitoring blood pressure at home, new mothers with hypertensive pregnancies can protect their bodies from future damage,” he said.

High blood pressure, in the form of gestational hypertension or pre-eclampsia, where there are signs of organ damage, affects 5 to 10 per cent of pregnant women.

The condition can damage the mother’s organs and endanger the baby’s life.

Beyond the immediate threat to mother and baby, hypertension in pregnancy can raise the risk of long-term problems, with women three times more likely to develop high blood pressure and twice as likely to have heart disease later in life.

The Oxford team recruited 220 women who developed hypertension in pregnancy. All were on blood pressure medication but were due to reduce their dosage and eventually stop taking the drugs.

In the study, 108 women had standard care in which their medication was reduced based on a few blood pressure checks in the eight weeks after giving birth.

The remaining 112 women used a monitor to check their blood pressure at home each day.

They entered the readings into an app shared with doctors who, if needed, changed their medication day to day, with the aim of giving them better control of their blood pressure.

The new approach led to much better control of the women’s blood pressure, and in tests six to nine months later the women had less stiff arteries.

Stiff arteries are less effective at expanding and contracting, which can drive high blood pressure and ultimately the formation of clots that can block blood vessels and cause heart attacks and strokes.

Trials are now under way to find effective ways of rolling out blood pressure monitoring to women after hypertensive pregnancies. One option is for specialist NHS clinics to deliver the care.

Dr Sonya Babu-Narayan, clinical director at the British Heart Foundation, which funded the work, said the results highlighted a crucial window after birth when paying close attention to blood pressure could help protect women’s heart health for years to come.

“We now look forward to seeing results from larger studies with longer follow-up to see how this might save women’s lives,” she said.

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Hormonal health

Researcher explores weight loss jab impact on PCOS

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Weight loss jabs are being studied to see if they could help women with polycystic ovary syndrome (PCOS)

The condition, which affects up to one in ten women, changes how the ovaries work and is linked to infertility and weight gain.

Dr Shagaf Bakour has won a £60,000 NHS research grant through Sandwell and West Birmingham NHS Trust to look at whether drugs such as Mounjaro and Ozempic might help.

“The research could lead to earlier support, better long-term health, and more joined-up care for a condition that affects many women but is still often overlooked,” she said.

Women with PCOS have higher levels of male hormones and can suffer from irregular periods and symptoms such as excess body or facial hair, the NHS said.

Associated weight gain can also lead to an increased risk of diabetes and heart problems.

Bakour, a gynaecologist and director of medical education at Aston Medical School, will work with a team to evaluate the effect of the weight loss medicines on metabolic and reproductive outcomes.

The drugs mimic a hormone called GLP-1, which suppresses appetite.

Bakour, alongside Dr Hoda Harb, a consultant obstetrician and gynaecologist at the NHS trust, will review existing evidence on their use and assess how they help patients with PCOS.

“The aim is to give women with PCOS evidence-informed, clearer treatment options and more consistent care,” she said.

“The project hopes to show whether these medicines can improve both general health and fertility health, while also helping local services develop clearer care pathways.

Prof Elizabeth Hughes, director of research and development at the NHS trust, said the effects of PCOS, including infertility, were “very emotive subjects”.

“We should be doing all we can within research and development to advance healthcare for women and to better help future generations with this condition,” she added.

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Diagnosis

Researchers teach AI to spot cancer risk by squeezing individual breast cells

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An AI tool could help spot breast cancer risk by analysing how individual breast cells behave when squeezed under stress, research suggests.

Researchers at City of Hope and the University of California, Berkeley, created a microfluidic platform that assesses women’s breast cancer risk at the cellular level.

The platform squeezes individual breast epithelial cells, which line breast tissue, to measure how they deform, recover and behave under stress.

Because more than 90 per cent of women do not have a known genetic predisposition to breast cancer or a family history of the disease, the researchers said the approach could help fill a key gap in risk assessment.

Mark LaBarge, professor in the department of population sciences at City of Hope, said: “For women with a known genetic risk factor for breast cancer, there are things you can do like follow a higher-risk screening protocol. For everybody else, you’re left wondering, ‘Am I at high risk?’

“By translating physical changes in cells into quantifiable data, this tool gives women something tangible to discuss with their doctors, not just risk estimates, but evidence drawn directly from their own cells.”

The researchers developed a machine learning algorithm that identifies and measures cells showing signs of accelerated ageing, generating an individual breast cancer risk score.

They said the platform uses simple electronics that could be easy and affordable to replicate on a large scale.

Lydia Sohn, chair in mechanical engineering at UC Berkeley, said: “Our team isn’t the first to measure the mechanical properties of cells; however, other approaches require advanced imaging technology that’s expensive, cumbersome and has limited availability.

“In contrast, MechanoAge uses computer chips that are simpler than an Apple Watch and ‘RadioShack parts’ that are cheap and easy to assemble, potentially making the device highly scalable.”

About 6 per cent of women who develop breast cancer carry known genetic mutations.

For women outside this group, risk is usually estimated indirectly using population models or measures such as breast density, which can both overestimate and underestimate individual risk.

The researchers said there is currently no non-genetic test that can identify women at higher risk of breast cancer.

Screening mammograms can detect cancer only once it has started to grow, but the MechanoAge platform aims to assess risk earlier by looking for physical changes in individual cells.

Using the platform, the researchers found that breast cells appear to have a “mechanical age” separate from a person’s chronological age, based on how the cells respond to stress.

They said this is the first time mechanical age has been quantified in biological cells.

Sohn said: “We learned that the older the mechanical age, as determined by how cells respond to being squeezed through our microfluidic device, the higher the risk for breast cancer.”

In this type of mechano-node-pore sensing, an electrical current is measured across a liquid-filled channel.

As cells pass through, they disrupt the current, generating measurements about their size and shape. By narrowing parts of the channel, researchers squeeze the cells and then measure how long each one takes to return to its normal shape.

The team found that cells from older women were stiffer and took longer to bounce back after being squeezed.

They also identified a subset of younger women whose cells behaved more like those from older women. These cells came from women with genetic mutations linked to a higher breast cancer risk.

The researchers then refined the algorithm to assign a risk score based on the cells’ measured mechanical and physical properties. They said it successfully identified women with known genetic risks.

The team then used it to compare cells from healthy women, women with a family history of breast cancer, and cells taken from the healthy breast of women with breast cancer in the other breast.

LaBarge said: “With accuracy, we were able to figure out which women were at high risk of breast cancer and which women didn’t seem to be.”

The work grew out of more than 12 years of collaboration between the two labs, combining engineering with cancer and ageing biology.

Sohn said: “It’s a true collaboration. We’ve learned a lot from each other.

LaBarge added: “In my view, this is what happens when you have a real collaboration that develops over a long time. This result is not what we imagined at the beginning.”

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