The Next Era of PMOS Care

How can PMOS care better reflect the full experiences of the teens living with it?

A new chapter is beginning for adolescents living with polyendocrine metabolic ovarian syndrome (PMOS). The hormonal and metabolic disorder formerly known as polycystic ovary syndrome (PCOS) is in the spotlight thanks to an international effort to rename the condition to better reflect the full-body impact. At Children’s Hospital Colorado, pediatric endocrinologist Melanie Cree, MD, PhD, and the team at the PMOS Clinic have been building a unique care model for this condition for almost 20 years. Together, they have created one of the most comprehensive, multidisciplinary adolescent PMOS clinics in the world.

Hurdles in PMOS care

Dr. Cree’s passion for studying women’s health started more than 30 years ago when she participated in an undergraduate summer research program looking at the effects of soy milk on changing estrogen profiles and breast cancer prevention.

“From that moment on, I was 100% hooked on clinical research for women's health,” Dr. Cree recalls.

Research on women’s health has historically faced significant gaps. Women were not required by law to be included in National Institutes of Health-funded clinical research until 1993. Conditions such as PMOS, which affects up to 10% of women, have also been understudied and often misunderstood. Under the former name, PCOS, the condition was frequently viewed through a reproductive health lens because of its focus on ovaries and cysts. That framing has limited opportunities to study the condition’s broader hormonal, metabolic and whole-body effects, which as a result, has limited the development of new treatment options.

“Why do we have the same therapy today that we had 50 years ago?” Dr. Cree questions. “We really don’t know that much about teenagers with PMOS.”

And Dr. Cree was motivated to change that.

A clinic where patients feel heard

In 2008, Dr. Cree started the multidisciplinary PMOS Clinic at Children’s Colorado. The clinic brings together endocrinologists, reproductive specialists, dietitians, psychologists and dermatologists to address the many systems impacted by the condition. This type of comprehensive care helps to improve diagnosis efforts, inform research priorities and empower adolescents to guide their care plans.

“Just because we can’t put somebody’s symptoms in a nice, neat box yet doesn’t mean we should ignore them,” Dr. Cree says. “The treatment should be prioritized to patient concerns, and then we need to look at everything comprehensively.”

PMOS literature shows that for more than one-third of patients, a PMOS diagnosis took at least two years and more than three healthcare professionals. The study also notes that many women felt their concerns were dismissed by their doctors, were dissatisfied with their diagnosis experience and didn’t feel they received enough information. Dr. Cree knew she needed to build a model of care where patient voices were at the center.

One of her patients, Maci, shares how the deep expertise of her doctors at the PMOS Clinic helped her feel heard and understood after she was referred to the program and diagnosed at 15 years old.

“Being able to have this judgement-free, inclusive environment in the healthcare system where you can speak your mind was really cool,” Maci says.

The strong relationship between patient care and research

One of the hallmarks of the PMOS Clinic’s success is the close relationship between patient care and the team’s research priorities.

“We are directly translating our research findings into our patient care,” Dr. Cree explains. “It’s actually completely changed how we counsel our patients.”

Dr. Cree has been collaborating with PMOS Clinic psychologist Stacey Simon, PhD, on research for more than a decade. Dr. Simon’s area of expertise is sleep, which is now seamlessly integrated into the lifestyle management coaching at the clinic. Based on their research, which showed that adolescents with PMOS are at a higher risk for obstructed sleep apnea, the team now consistently asks about snoring at appointments and refers patients for sleep studies as needed. Having doctors who balance clinical experience and research projects helps the team provide the best-informed care.

“I think it’s so helpful for me to be in the clinic with teens and their families to understand what they are bringing up to their providers about their concerns,” Dr. Simon says. “That is really informative for our research direction.”

Guiding the future of PMOS care

The PMOS Clinic team doesn’t just stop with research and whole-patient clinical care — they are also advocating for better PMOS care across the country. Dr. Cree was part of an international team of doctors who advocated for changing the name of the diagnosis from PCOS.

She also launched the first adolescent PMOS database of its kind in the United States, called CALICO. Nearly 20 sites are participating in the database, which now includes valuable data on more than 1,200 patients with PMOS. This will finally give doctors an accurate picture of how adolescent patients with PMOS present and how they are being treated, opening the door for new research opportunities.

Drs. Cree and Simon, alongside the PMOS Clinic team, published guidelines on the multidisciplinary clinic model at Children’s Colorado to help other programs start up similar clinics. The team has presented this model at national meetings and helped doctors in other states launch multidisciplinary programs for PMOS. Additionally, they are partnering with other health institutions on quality improvement efforts, such as sharing electronic medical record templates to improve care.

This guiding program is built on listening to teens’ experiences, using their voices to shape treatment and letting what we learn guide research across the clinic.

“I get to see people who are just having such success. And then when I meet new patients, I'm coming from this background of confidence,” Dr. Cree says. “We can do something for you. It may take us a little while to figure it out, but we've got so many different options. We will figure out what works best for you and your family.”