The guide by the side

Professor Helena Teede led an Australian team which wrote the first evidence-based guidelines in the world focused on improving the experience for women with polycystic ovary syndrome. She heads the Monash Centre for Health Research and Implementation, bent on greater stakeholder engagement and on improving the patient experience

Polycystic ovary syndrome (PCOS) — the inaccurately named, multifaceted group of ailments that affects one in five Australian women — changed the career pathway of endocrinologist Professor Helena Teede.

Professor Teede has many roles: professor of Women’s Health at Monash University in Melbourne, director of the Monash Centre for Health Research and Implementation, head of Diabetes and Vascular Medicine at Monash Health, president of the Endocrine Society of Australia … the list is long and storied.

But it is her work in the field of PCOS research — work for which she and her colleagues, including Professor Robert Norman from the University of Adelaide, have just received a $2.5 million grant from the National Health and Medical Research Council (NHMRC) to set up a Centre for Research Excellence — and her work towards improving the patient experience for those with PCOS and more broadly that excites her the most.

Because of the complex nature of PCOS, many women go undiagnosed.

“PCOS has many different health impacts and it varies across the life span”, Professor Teede tells the MJA.

In adolescence, PCOS causes irregular menstrual cycles, increases facial and body hair, and causes acne. It also seems to predispose young women to weight gain.

“All of those things are not particularly great for self-esteem, as you can imagine”, she says. “There is more anxiety and depression and significant effects on quality of life.”

Often young women with PCOS go to their GPs for treatment for irregular periods and are prescribed an oral contraceptive to help regulate their cycles, but are not diagnosed with PCOS. They may go through to their late 20s before becoming aware that they have the condition when they come off the pill and are trying to conceive.

“By then we’ve lost opportunities to minimise the PCOS complications and optimise fertility”, Professor Teede says.

Through their early 20s women with undiagnosed PCOS have an increased risk of metabolic disease, including prediabetes, gestational diabetes and type II diabetes, and increased cardiovascular risk factors.

They often continue to put on weight and, as they get older, the metabolic features predominate.

Understanding PCOS is not helped by its name.

“The ovaries are not polycystic. The name is historically incorrect”, Professor Teede says. “There are no cysts on the ovaries — they’re simply follicles or eggs that become dormant because they don’t function in the hormonal environment.”

That environment includes insulin resistance and elevated androgens, a combination exacerbated by a genetic predisposition heralded by parental history of PCOS or type 2 diabetes and by obesity and inactivity.

“It’s a vicious cycle because [genetics and a sedentary lifestyle] can drive increased weight gain, but weight gain also exacerbates the condition”, Professor Teede says.

Diagnostic and therapeutic strategies are inconsistent across health disciplines. Patients may have only one symptom of PCOS treated, have many different tests, and delayed diagnoses.

“Essentially these young women have a myriad of reproductive, metabolic and psychological features and fall through the gaps in our increasingly specialised health system”, she says.

“As a younger clinician, I would see these young women, often with their mothers, and they would come in and they would commonly say ‘we’ve been told we have PCOS and we’ve been told we will never have children’.

“And that was one of the main things that pulled at my heart strings as a clinician.

“I thought, ‘there’s a real problem here, these girls are not being diagnosed, they’re not being well supported and managed … it’s a real gap and we ought to do something about it’. From research, we know women with PCOS can successfully have a family, prevent other complications and improve quality of life with diagnosis and treatment, yet this was not happening enough.”

What Professor Teede did about it was to focus on PCOS — conducting research, publishing, presenting and winning grants.

“It was wonderful … and it wasn’t changing anything”, she says.

“I was becoming disillusioned with my academic career because I was ticking all the academic metrics boxes, but I wasn’t changing practice.”

The revelation came when she and her colleagues decided to go back to basics and listen to the patients’ stories, via a national workshop involving patient support groups, academics, multidisciplinary health professionals including GPs, Jean Hailes for Women’s Health and government representatives, the media — “all the stakeholders we could think of”.

“That was the defining moment because we started off with the voices of the women with the condition, and we got them to actively participate in prioritising the areas they wanted to see improved.

“All the political agendas disappeared because it became all about the difficulties these women were experiencing.”

At one point a high-profile female journalist with the condition said “having PCOS made you feel like you were going to get fat, infertile, depressed and hirsute, and who would want to admit to or engage in a discourse about that”.

“That was very profound”, Professor Teede says.

“We collectively formed the PCOS Alliance and in 2009 the government said it was time to raise PCOS awareness.”

“We obtained quite a generous grant to develop evidence-based guidelines and to disseminate and implement them.

“They were the first evidence-based guidelines in the world on PCOS, they were rigorously developed and approved by the NHMRC and on the back of that we launched the dissemination and implementation plan.

“And that was the most satisfying because finally with research, evidence synthesis and implementation we changed practice.

“While there is more to be done, we’ve seen an increase in diagnosis, an increase in appropriate screening and models of care for women with PCOS and improvements in access to care.”

“One of the key things about the message is it’s all about prevention — preventing the weight gain before obesity occurs, and partnering with women to optimise fertility and reproductive, metabolic and psychological health.

“The codesigned models of care are patient led — very much about educating the health professionals, but empowering the patient to own the problem which they’re going to have lifelong.

“There is still much to be done and now with this Centre for Research Excellence, 5 years from now, more women with PCOS will be able to say, I understand what causes the condition, I understand what the natural history is, I understand how I can ameliorate that, I understand how I can treat it, plus we’ll also have insight into better treatments,” she says.

Her PCOS experience also reinforced with Professor Teede something that had been part of her process since her days as a student and junior endocrinologist.

“Clearly the element of leadership, collaboration and community engagement combined with research and evidence-based, patient-centred care are absolutely fundamental”, she says.

Mentoring — both as a mentor, and as a mentee — has been a huge part of Professor Teede’s career.

“The academic background in endocrinology in Australia was very strong and mentors were critical to me”, she says.

Professor Henry Burger, a veteran endocrinologist, now emeritus consultant at Prince Henry’s Institute, and Professor Rob Norman were big influences, but it was the scarcity of female mentors which struck a chord. Female mentors did eventually emerge including Shelly Park, CEO of Monash Health, but they were few and far between and often from outside medicine.

“I’ve done a lot of mentoring of young women because when I came to specialise it was really surprising … I did not have a single female mentor who had a family life and an active academic and clinical career, and yet there were many male mentors out there who had it”, Professor Teede says.

It’s one of the most important pieces of advice that she offers junior doctors.

“Get a mentor — get several mentors and don’t just get people in medicine.

“To me it’s just someone giving you a different perspective. When you ask someone to mentor you, you’re saying I respect you, that I think you’ve got credibility, that I would like you to help shape me and who I am.

“It’s a real compliment and very rarely, as long as you don’t abuse that, are people going to say no.

“As doctors we often think that we should be able to cope with everything that we deal with and I do think being a doctor in this day and age is a bit harder than it used to be.”

Professor Teede is married to a leading clinician academic and they have two adolescent daughters. She has been on the receiving end of that old chestnut of “superwoman” more times than she cares to remember.

“I reflected recently that actually you can’t have it all, because it’s just too difficult to be across everything. But you can have what you want, as long as you can work out what that is and focus on it. For me it’s family and a career with measurable health impact.”

Professor Teede believes young people coming into the medical profession are both privileged and in for an exciting ride.

“The light at the end of the tunnel is there, once we get over this perspective that the responsibility sits only with the health care provider and actually learn that the responsibility sits jointly with the patient and the family and the health care provider and that we walk together.

“We hold the expertise around the medical content but the patient and the family hold the expertise around their life, their culture and their beliefs and we must walk together.

“When we understand that we’re moving from the sage on the stage to the guide by the side, and our roles are clear, and the legal frameworks actually catch up with that perspective, I think it’s a really exciting phase to go into medicine.”