PCOS: A New Way to Advance Clinical Research
Children’s Mercy Database Integral to Investigation of PCOS
Incidence of PCOS
Polycystic ovarian syndrome (PCOS) is a prevalent endocrine condition that affects an estimated 6%-12% of women of reproductive age in the United States.1 PCOS develops in genetically predisposed females where the severity of clinical expression is compounded by environmental, nutritional and lifestyle factors. The genetic predisposition mainly affects ovarian function, manifesting in a tendency toward ovulation dysregulation and hormonal imbalance, which favors androgen production.
Short- and long-term consequences of menstrual dysfunction and hormonal imbalance may include:
- Hirsutism and severe acne
- Depression and anxiety
- Insulin resistance/metabolic syndrome
- Sleep apnea
- Weight gain and type 2 diabetes
- Nonalcoholic fatty liver disease
- Heart disease
- Endometrial hyperplasia/cancer
Early diagnosis and treatment of PCOS may benefit the adolescent cosmetically by reducing clinical manifestations of hyperandrogenism, as well as offer symptomatic relief of menstrual dysfunction. Most importantly, however, early diagnosis and management of PCOS may reduce the development of associated conditions and complications.
Addressing PCOS with a Multispecialty Program
The Children’s Mercy Kansas City Multispecialty Adolescent PCOS Program (MAPP) is led by Tania Burgert, MD, Pediatric Endocrinologist; Associate Professor of Pediatrics, University of Missouri-Kansas City School of Medicine. Dr. Burgert has long been involved with the diagnosis and treatment of PCOS and is a well-recognized leader in the field, serving on the board of directors of the Androgen Excess and PCOS Society and on the medical/scientific advisory board of the PCOS Challenge.
To address the constellation of symptoms adolescents aged 13-21 with PCOS face, Dr. Burgert established one of the few multispecialty programs in the nation at Children’s Mercy.
Unique to the program is the array of clinical specialists involved in several dimensions of each patient’s care. The clinic includes endocrinologists who focus on metabolic and endocrine concerns; adolescent medicine specialists who address gynecological health and mental health needs, such as anxiety and depression; and dietitians who provide nutritional counseling to help achieve lifestyle and weight goals.
Multispecialty care enables the team to take an individualized treatment approach focused on educating patients and their families regarding what PCOS is and empowering them to take an active role in managing the condition.
To streamline care, MAPP clinicians see the patient in a central location, bringing services to the exam room and ensuring a unified diagnostic approach. At the conclusion of the appointment, the clinicians explain the patient’s diagnosis and give them a cohesive treatment plan with follow-up recommendations, serving as a central point of contact for all their questions and care.
Advancing Clinical Research
The MAPP at Children’s Mercy is also committed to the advancement of clinical research.
Children’s Mercy is the primary recruitment site for a National Institutes of Health-funded study, Trajectory of Ovarian Morphology During the Adolescent Reproductive Transition. Marla Lujan, PhD, Cornell University, is the principal investigator for the grant. Dr. Burgert and Dr. Romina Barral are the MAPP collaborators for this research, and Heidi Vanden Brink, PhD, is the postdoctoral fellow involved in this study.
The study examines ovarian morphology using 2D and 3D transabdominal ultrasound longitudinally during the first two years post menarche in the general adolescent population alongside tracking menstrual cyclicity and changes in reproductive hormones during this developmental window. The main goal of this ongoing study is to establish ovarian morphology as an early, reliable biomarker for normal versus aberrant reproductive maturation and a potentially early indicator of PCOS in the years immediately following menarche.
PCOS Patient Database Yields Original Research
The Children’s Mercy MAPP also established a REDCap database of over 500 MAPP patients for retrospective research to further the understanding of PCOS during adolescence. Recently, MAPP team members presented some findings of their research at the November 2020 Androgen Excess and PCOS Society and the April 2021 Pediatric Endocrine Society meetings. These studies include:
- Androgen Excess and PCOS Society Poster Presentation: Intraindividual Testosterone Variability Challenges the Diagnostic Process in Adolescents with PCOS. This poster included 73 adolescents seen in the MAPP and diagnosed with PCOS. Data suggested that a normal total testosterone at initial evaluation may not reliably rule out biochemical hyperandrogenism in adolescents. Total and free testosterone exhibit significant intraindividual variation when repeated within three months. Because biochemical hyperandrogenism is a central diagnostic feature of PCOS, caution should be used when relying on a single measurement for the diagnosis of PCOS in adolescents. Further prospective research is needed to corroborate these findings and to elucidate the relevance of other factors that may account for intraindividual variation.
- Pediatric Endocrine Society Oral Research Presentation: Transgender Identity Among Adolescents with PCOS. This abstract looked at 169 adolescents from the MAPP and found a slight difference in the prevalence of transgender identity between PCOS and non-PCOS, though not statistically significant. Interestingly, patients with greater degrees of hirsutism were more likely to identify as transgender. This may have implications for treatment goals in those who desire a transmasculine appearance or fear increased identity conflict with return of menstrual cycles. The team’s findings suggest that screening for gender dysphoria should be considered in practice recommendations for comprehensive adolescent PCOS programs.
- Pediatric Endocrine Society Presidential Poster Presentation: HbA1c as a Surrogate for Dysglycemia in Polycystic Ovary Syndrome (PCOS). Dysglycemia and insulin resistance are comorbidities of PCOS and may contribute to its pathophysiology, and therefore are important to reliably screen. In this study, investigators evaluated the agreement between HbA1c, a common clinical biomarker of dysglycemia, and oral glucose tolerance testing (OGTT)-derived measures of dysglycemia. The team found that although HbA1c is more clinically attractive, not requiring fasting blood measurements nor a two-hour time commitment, the findings did not support the use of HbA1c as a surrogate for assessments of dysglycemia in an adolescent population with PCOS. Low sensitivity suggests continued use of OGTT-derived metrics for dysglycemia in adolescents with PCOS. Interestingly, the research team noted that BMI may influence the ability of HbA1c to predict dysglycemia. Research is ongoing to elucidate the relevance of HbA1c uniquely in lean versus overweight populations.
Collaborate with the Children's Mercy Multispecialty Adolescent PCOS Program
The MAPP continues to build its database of adolescents diagnosed with PCOS. If you are interested in collaborating with Children’s Mercy to build a stronger database to study this patient population, please reach out to:
Tania Burgert, MD, Pediatric Endocrinologist
For consults, admissions or transport call: 1 (800) GO MERCY / 1 (800) 466-3729.
1. Centers for Disease Control website. Accessed 6/1/2021: https://www.cdc.gov/diabetes/basics/pcos.html.
Children’s Mercy Kansas City is an independent, non-profit, 390-bed pediatric health system, providing over half a million patient encounters each year for children from across the country. Children’s Mercy is ranked by U.S. News & World Report in all ten specialties. We have received Magnet® recognition five times for excellence in nursing services. In affiliation with the University of Missouri-Kansas City, our faculty of nearly 800 pediatric specialists and researchers is actively involved in clinical care, pediatric research and educating the next generation of pediatricians and pediatric subspecialists. The Children’s Mercy Research Institute (CMRI) integrates research and clinical care with nationally recognized expertise in genomic medicine, precision therapeutics, population health, health care innovation and emerging infections. In 2021 the CMRI moved into a nine-story, 375,000-square-foot space emphasizing a translational approach to research in which clinicians and researchers work together to accelerate the pace of discovery that enhances care.