Comprehensive Transition of Care for Polycystic Ovary Syndrome (PCOS) from Adolescence to Adulthood

Summary

Polycystic ovary syndrome (PCOS) is a lifelong chronic condition that affects one in ten females and can first be diagnosed in adolescence. As adolescents with PCOS transition to adulthood, counselling for lifestyle management and mental health concerns often transition from involvement of the family unit to individual focused approaches. PCOS is associated with a large range of co-morbidities including reproductive, metabolic, dermatologic, and psychological conditions. The diagnosis and co-morbidities are influenced by pubertal hormones and need to be reassessed and potentially treated differently as individuals age. Similarly, patient identified concerns often change, especially surrounding reproductive management. In this narrative review, prevalence rates, screening tools, and treatment recommendations for PCOS-related conditions are provided, as well as diagnostic and clinical considerations for transition of care between adolescent and adult populations.

Introduction

The transition from adolescence to adulthood is one of the most significant developmental shifts across an individual’s life, with increased individual autonomy and decreased family influences¹. In those with polycystic ovary syndrome (PCOS), this can mean dramatic changes in patient-identified priorities for healthcare. Medical and psychological support must also adapt to match these changing developmental needs¹.

PCOS is one of the most common endocrinopathies, affecting one in ten females. However, PCOS often goes unrecognized, and diagnosis is delayed.¹ The pathogenesis of PCOS is not fully understood but includes a combination of genetic and environmental influences.² PCOS is one of the leading causes of female infertility and is associated with metabolic comorbidities related to insulin resistance (IR) and increased risk for mental health conditions³. PCOS is closely related to obesity, and the prevalence rates of PCOS have increased in parallel to the rising prevalence of worldwide obesity⁴. New international evidence-based guidelines on the assessment and management of PCOS were released in August 2023 and emphasize personalized, patient-centered approaches to care across the lifespan, including reproductive, metabolic and weight management, mental health, and dermatologic specialties³. Ideally, comprehensive PCOS care can be achieved with a multi-disciplinary clinic model with provider expertise in each domain, although most patients typically receive care from a primary care or gynecologic provider alone^3,5. This translates to the need for provider knowledge in most domains of PCOS care.

In the current narrative review, we describe approaches and considerations for transition of care for young patients with PCOS across the reproductive, metabolic and weight management, mental health, and dermatologic domains. For each domain, we provide information on changes in clinical symptomatology and presentation from adolescence to adulthood, recommended assessment tools and therapeutic suggestions, and considerations for healthcare providers during the transition from pediatric to adult healthcare.

Diagnosing PCOS

PCOS can be diagnosed anytime within the reproductive period of a female’s lifespan beginning in puberty. The diagnostic process has historically been problematic with inaccuracies, the need to see multiple providers, and years long delays². The delay in diagnosis was attributed to a lack of consistent guidelines, leading to the publication of the 2018 Evidence-Based International Guidelines for PCOS, a worldwide consortium effort which included patient input and was approved by >35 professional organizations, which was updated in 2023³. The diagnostic criteria for adolescents and adults are different (Table 1). Both include irregular menses and clinical/biochemical signs of hyperandrogenism, and exclusion of other causes of symptoms. However, the definitions of normal cycle length between adolescents and adults are different, due to the continued maturation of the hypothalamic pituitary axis in the four years post-menarche⁴. The international guidelines state that PCOS can be diagnosed one year after menarche, so as to allow for early diagnosis and treatment, whereas older pediatric guidelines state 2 years to allow for more reproductive axis maturation and reduce over diagnosis.^3–5 Additionally, ovary criteria including ovarian ultrasound and anti-mullerian hormone (AMH) concentrations should only be used in those ≥eight years post-menarche, due to the lack established norms in adolescence^3–5. In adolescents with either irregular menses or hyperandrogenism, but not both, and no other identified causes, an “at risk for PCOS” diagnosis can be made, and this status can be reassessed with any changes in patient symptoms³. IR is important in the presentation of PCOS, regardless of BMI status.^6,7 For example, worse IR with compensatory increased insulin secretion is associated with longer cycle length and need for longer duration of ovary stimulation for ovulation induction⁸. Whereas metabolic comorbidities are common in individuals with PCOS, especially those with obesity, laboratory values for these conditions, especially insulin, have no role in making the diagnosis of PCOS. The diagnostic criteria are the same for patients with and without obesity.³ Ideally, diagnosis occurs in adolescence, so that preventive measures for PCOS-related comorbidities can be applied early.

Table 1.

Diagnostic Criteria for Polycystic Ovary Syndrome in Adolescents and Adults

	Measure	Adolescents	Adults	Notes
Clinical or Laboratory Evidence of Hyperandrogenism	Hirsutism (Ferriman-Gallwey Score, 0-24)	Yes	Yes	6 generally accepted as cut-off for clinical hirsutism. May range from 4-8 based on heritage.
	Acne	No	Yes	Acne is very common in adolescence
	Androgenic Alopecia (Ludwig scale, scale range I–III)	Yes	Yes
	Blood testing: Total testosterone SHBG Calculated FAI Free Testosterone	Yes	Yes	No established value cut-offs for testosterone. Use local included assay range.LC/MSMS assay is the assay of choice. Other types of assays are less accurate. Testosterone peaks in the morning during the early follicular phase, which can lead to false negative results with afternoon and luteal phase collections. In obesity, SHBG can be low, causing a lower total testosterone which can lead to a false negative result. Calculated FAI or free testosterone measurements are not affected by obesity.
Irregular Menses	Menstrual history	Yes	Yes	Primary Amenorrhea (> 15 years, or 2 years post-thelarche) Oligomenorrhea: Normal in first year post-menarche; After the first-year post-menarche >90 days; 1-3 years post-menarche <21 or >45 days 3 years post-menarche <21 or >35 days or < 8 cycles/year
Polycystic Ovary	Transvaginal ovary ultrasound for ovary size and follicle count	No	Yes	Can use ultrasound in adolescents to assess for structural abnormalities or endometrial stripe thickness
	Blood testing: Anti mullerian hormone	No	Yes	New with 2023 International PCOS Guidelines Above the upper limit of normal for the local assay is supportive of a diagnosis of PCOS
Rule Out Other Causes of Oligomenorrhea and/or hyperandrogenism	Blood testing: hCG, Prolactin, FSH, TSH 17hydroxyprogesterone, DHEAS	Yes	Yes	Causes of oligomenorrhea: pregnancy, prolactinoma, ovarian failure, hypogonadotropic hypogonadism, hypo- or hyper- thyroidism Causes of excess androgens: Late onset congenital adrenal hyperplasia, adrenal adenoma, Cushings (extremely rare)

Note: Adolescents must have hyperandrogenism and irregular menses for diagnosis. If adolescents have one, they can be considered “at-risk for PCOS”. At 8 years post-menarche, adult criteria can be used, and include any two of hyperandrogenism, irregular menses or polycystic ovary. Abbreviations: DHEAS= dehydroepiandrosterone sulfate; FSH= follicle stimulating hormone; FAI=Free Androgen index, FAI; HCG=human chorionic gonadotropin; LC/MSMS= Liquid Chromatography/Mass tandem spectroscopy; SHBG Sex hormone binding globulin; TSH=thyroid stimulating hormone

The interaction between PCOS and puberty

The severity of PCOS and metabolic comorbidities can be intensified during puberty, due to the additive effect of puberty-related IR and PCOS-related IR. Puberty is a time of rapid growth and insulin plays a critical role in many metabolic mechanisms to support growth, such as the stimulation of muscle protein synthesis. IR in terms of glucose metabolism is thought to be a normative physiologic process due in part to increases in growth hormone and sex steroids to prioritize growth mechanisms and is accompanied by excess insulin^9,10. This IR and insulin excess peaks mid-puberty at approximately Tanner 3-4 stage of development in both sexes and any BMI and can continue through the second decade of life until adult physiology is achieved¹⁰. Changes in IR across puberty occur in youth with and without obesity, and insulin concentrations during an oral glucose tolerance test (OGTT) are three-fold higher in youth¹⁰. Dysglycemia can also develop mid-puberty, as the pancreas sometimes cannot meet the excess production demands, though this sometimes resolves with aging¹¹. Changes in early pubertal IR have been associated with excess testosterone in females and the IR of puberty with the resultant excess insulin is additive to the IR and excess insulin from PCOS⁹. Among adolescents with PCOS and obesity, younger patients had a longer time between menses, higher testosterone, fasting and OGTT-stimulated insulin, and IGF-1, compared to older adolescents¹². Thus, clinicians may note improvements in reproductive and metabolic measures as individuals approach adulthood, and the effect of puberty related IR disappears.

Cardiometabolic complications and obesity

In PCOS, IR is closely associated with metabolic co-morbidities, including dysglycemia, T2D, hyperlipidemia, hypertension and metabolic dysfunction-associated steatotic liver disease (MASLD; formally known as non-alcoholic fatty liver disease), which can worsen with early puberty. Recommended screenings for these co-morbidities are reviewed in Table 2, with adolescent recommendations coming from an overlap of 2023 PCOS international, American Academy of Pediatrics, North American Society For Pediatric Gastroenterology, Hepatology & Nutrition and American Diabetes Association Guidelines^3,13,14. Youth with PCOS and obesity were 18.4 times more likely to develop T2D relative to the NHANES cohort, with increased risk in those with elevated HbA1c, ALT, and Hispanic ethnicity, and thus screening for type 2 diabetes in youth with PCOS and obesity is more frequent than adult guidelines¹⁵. Adolescents with PCOS often have higher rates of MASLD compared to adolescents without PCOS even girls who are not obese have higher concentrations of liver fat⁶. Patients with PCOS are more likely to have elevated triglycerides, often in association with MASLD. Lower HDL and SHBG is also common, due to the direct effect of both testosterone and insulin on protein production³. Screening guidelines for lipids vary between pediatric and adult recommendations, with less frequency in adolescents without obesity.

Table 2.

Screening and Assessment Tools for Polycystic Ovary Syndrome

Domain	Sub-Domain	Tools	Suggested Frequency
Transition of Care	Transition from pediatric to adult clinician OR from pediatric to adult model of care without changing clinicians	https://GotTransition.org Transition Planning Tool94	Beginning at age 14-18 years and repeated annually or as needed depending on how large the gap is for transition readiness.
Cardiometabolic	Dysglycemia	75-gram oral glucose tolerance test3,13 HbA1c is considered second line if OGTT is not feasible	At diagnosis. Every 2-3 years if no dysglycemia, more frequent pending degree of dysglycemia. Every 3 months when HbA1c >6.0% in adolescents.
	Hypertension	Blood Pressure3,17,23	Every visit.
	Hyperlipidemia	Fasting lipid panel3,17,23	Start at 9 years in obesity, puberty if no-obesity. Every 2-3 years in obesity.
	Metabolic dysfunction-associated steatotic liver disease	Serum ALT14 Fibroscan	At diagnosis. If abnormal every 6 months, otherwise every 2-3 years.
Dermatologic	Acne vulgaris	Global Acne Grading System95 Investigator Global Assessment of Acne 96	At diagnosis and as clinically indicated. Post treatment as needed to monitor treatment response and progress.
	Hirsutism	Ferriman-Gallwey score66
	Androgenic alopecia	Ludwig classification I-III97
	Hidradenitis suppurativa	Severity Assessment of Hidradenitis Suppurativa Score98
	Acanthosis nigricans	Clinical exam
	Confluent and reticulated papillomatosis	Clinical exam
	Keratosis pilaris	Clinical exam
Sleep	Sleep-disordered breathing	Berlin Questionnaire99	At diagnosis and as clinically indicated. Post treatment as needed to monitor treatment response and progress.
	Sleep disturbance	PROMIS Sleep Disturbance100,101
Mental Health	Disordered eating	Binge Eating Scale102 The Eating Disorder Examination Questionnaire103	At diagnosis and as clinically indicated. Post treatment as needed to monitor treatment response and progress.
	Body image	Body Image Concern Inventory104
	Depression	Center for Epidemiological Studies Depression Scale (CES-D) 105 Patient Health Questionnaire (PHQ-9) 106
	Anxiety	Generalized Anxiety Disorder-7 (GAD-7) 107
Sexual and Reproductive Health	Sexual Function	PROMIS SexFS108 Single Item Checklist Screener for Sexual Problems109	At diagnosis or disclosure of coitarche, whichever occurs first, and then annually.
	Reproductive Planning	Reproductive Life Plan110	At transition to adult care and again every 1-2 years.

Treatments for metabolic complications are not different for those with PCOS and are again covered across many clinical guidelines. Multi-disciplinary approaches are described in international guidelines for treating child and adolescent obesity¹⁶, and the 2023 American Academy of Pediatrics (AAP) Clinical Practice Guideline on pediatric obesity¹⁷ adds information on medications and surgery for weight management . Treatment for T2D should be guided by the International Society for Pediatric and Adolescent Diabetes consensus guidelines¹⁸ and the American Diabetes Association standard of care guidelines for adolescents and adults^13,19. Therapies to delay or prevent T2D which are standard-of-care for adults are not effective in adolescents²⁰. T2D in youth progresses faster and requires more aggressive, multi-pharmacologic management than adult-onset T2D²¹. Management of hypertension and hyperlipidemia similarly should follow International Society of Hypertension²² and American Heart Association guidelines which are specific for females and account for differences by race and ethnicity²³. There are no current medications approved for MASLD, although lower dietary intake of simple carbohydrates and fructose are beneficial¹⁴. As newer metabolic/weight loss therapies are developed, it is likely that guidelines will recommend treatment with phentermine/topiramate, or receptor agonists of glucagon-like peptide-1 or glucose-dependent insulinotropic polypeptide^3,24–26.

Long-Term Sequelae and Management Metabolic and weight management

Nutrition

Regardless of BMI or age, lifestyle behaviors that support healthy nutrition and physical activity are recommended first line for patients with PCOS to support a healthy weight, hormonal outcomes, and health-related quality of life (HRQOL)³. Indeed, dietary behaviors in adolescence may impact health status in adulthood, emphasizing the importance of establishing healthy habits as early as possible²⁷. For those with overweight/obesity and PCOS, multicomponent lifestyle treatment is associated with weight loss, decreased central adiposity, and improved insulin sensitivity³.

No specific macronutrient composition has been shown to be clearly superior for PCOS-related clinical outcomes. However, intake of whole grains (high fiber, low glycemic index) is associated with decreased IR in PCOS, improved fertility outcomes, and improved hirsutism²⁸. Though existing evidence does not support a specific nutrition approach for PCOS, dietary patterns that support intake of high-fiber, lower glycemic index carbohydrates and promote overall cardiometabolic health include the Mediterranean and DASH dietary patterns^29,30. Specialized dietary approaches, including intermittent fasting and meal replacement, have not been rigorously studied in PCOS, though limited data suggests these strategies may be tools to improve metabolic outcomes in patients with PCOS^31–33. Pragmatic nutrition considerations for adolescents transitioning to adulthood include their emerging autonomy for food choices, social aspects of eating, experimentation with alcohol, shifting responsibilities for purchasing and preparing food, and possibly limited finances.

When weight loss is a treatment goal in PCOS, caloric reduction is one tool that can be personalized. A reduction of 500-750kcal/day from baseline through sustainable dietary modifications is a practical starting point. However, total daily calories should be tailored to individual energy needs for age and activity level³. Further, given the ~four times higher odds of eating disorders in PCOS, eating behaviors should be closely monitored³⁴. Ultimately, the specific nutrition approach chosen should reflect shared decision making with the patient that factors in development and autonomy, socio-cultural preferences, and considers social determinants of health including food insecurity³⁵.

Dietary Supplements

Numerous nutrition supplements including vitamins and minerals, pre- and probiotics, and nutraceuticals have been studied in and/or marketed for PCOS. Pathophysiologic targets include IR, inflammation, oxidative stress, micronutrient deficiencies, hormonal dysfunction, and the gut microbiome. As an example, inositol, a naturally occurring sugar-like molecular messenger, is associated with improved menstrual regulation, with possible benefits for testosterone and IR³⁶. Inositol currently has a very low certainty of evidence but has a conditional recommendation as a treatment option for non-fertility related PCOS outcomes because of its low risk of harm³. The Natural Medicines Comprehensive Database is one valuable resource, which grades data for complementary and alternative medicines³⁷. An informed, non-judgmental approach by the PCOS clinician can encourage transparency about patients’ use of these products and support holistic, culturally sensitive care.

Advanced weight management tools

The toolbox for obesity treatment has markedly expanded, including several new FDA-approved medications and ongoing data supporting the durable efficacy and safety of metabolic bariatric surgery (MBS). However, studies of these advanced therapies in PCOS specifically remain limited (particularly for adolescents) and current PCOS guideline recommendations are driven by the general weight management literature.

Indications

The AAP guideline emphasizes that there is no role for “watchful waiting” in youth with obesity and highlights the need to initiate evidence-based treatment as soon as possible at the highest available intensity¹⁷. This includes combination treatment of motivational interviewing, intensive health behavior/lifestyle treatment, pharmacotherapy, and/or MBS. These guidelines specifically state that pediatric clinicians should, as an adjunct to lifestyle interventions, offer adolescents 12 years and older with obesity (BMI ≥95^th percentile for age/sex) weight loss medications, and adolescents 13 years and older with severe obesity (BMI ≥120% of the 95^th percentile for age/sex) a referral for MBS evaluation¹⁷. In adults, the threshold to initiate adjunct anti-obesity pharmacotherapy is lower (BMI ≥27kg/m² with a weight-related complication or BMI ≥30kg/m²)³⁸. For bariatric surgery in adults, indications are BMI ≥35kg/m² regardless of comorbidity status and consideration for those with a BMI 30-34.9kg/m² with metabolic disease including PCOS³⁹.

Anti-Obesity Medications

Current anti-obesity medications including phentermine+topiramate, glucagon-like peptide-1 receptor agonists (GLP-1 RA) liraglutide and semaglutide, and bupropion+naltrexone act centrally to decrease appetite and increase fullness⁴⁰. The exception is orlistat, which inhibits gastric/pancreatic lipase to reduce dietary fat absorption by ~30%⁴¹. Average placebo-subtracted weight loss at ~1-year ranges from 2-3% with orlistat to 15-17% for weekly injectable semaglutide, with highly variable individual response^26,42. While medications are generally well tolerated, patients should be monitored for potential side effects. In PCOS specifically, given the high co-prevalence of mood and sleep disorders, possible anxiety/insomnia with phentermine, depressive symptoms with topiramate, and excess nausea/vomiting with GLP-1 RA, may be particularly relevant. Over-suppression of appetite should be avoided, and healthy meal routines supported. In patients with PCOS, current evidence suggests that in addition to weight loss, GLP-1 RAs are associated with improved IR, hyperandrogenism, and, when combined with metformin, may improve pregnancy rates^43–45. Overall, adjunct anti-obesity pharmacotherapy should be considered when lifestyle interventions do not adequately reduce weight and related complications for patients with PCOS.

Given that anti-obesity medications act on cues of hunger and satiation, all patients with PCOS should be screened for eating disorder symptoms prior to initiation. Data are limited on treatment for obesity with co-morbid disordered eating; although there is some literature on behavioral interventions⁴⁶, literature on anti-obesity medications is also scarce. Providers and patients should consider possible onset or worsening of eating disorder symptoms while taking anti-obesity medications⁴⁷. Table 2 provides a list of eating disorder assessment tools to implement at intake or follow-up visits for longitudinal monitoring and disposition planning. If patients screen positive for disordered eating, they should be referred to a mental health provider for further evaluation and treatment. The American Diabetes Association’s Mental Health Provider Directory (my.diabetes.org/health-directory) provides a list of mental health providers with expertise in the psychosocial management of diabetes-related concerns, including eating disorders, which could meet the mental and physical health needs of patients with PCOS. Additional information regarding eating disorders in PCOS is provided below.

Metabolic Bariatric Surgery (MBS)

The role of MBS for individuals with PCOS and obesity is still being clarified. MBS, primarily sleeve gastrectomy and Roux-en-Y gastric bypass, remains the most potent tool for safe and durable weight loss (~25%) and comorbidity remission in adolescents and adults³⁹. Importantly, adolescents who undergo gastric bypass have higher remission rates of T2D and hypertension than their adult counterparts at five years postoperatively, despite similar weight loss⁴⁸. Given the excess risk of T2D development among adolescents with PCOS¹⁵, early consideration of advanced obesity treatments including MBS is crucial. The relationship between MBS and pregnancy is complex. While MBS appears to improve menstrual regularity, ovulation, and pregnancy rates in PCOS and decreases risks of gestational diabetes and cesarean deliveries, it has also been associated with small for gestational age, intrauterine growth restriction, and shorter gestational age^49–51. Despite strong evidence supporting medications and bariatric surgery as part of a comprehensive obesity treatment plan, adoption into clinical practice has been slow, especially in pediatrics, and it is likely that the adult PCOS clinician will be the first to discuss these treatment options for many young adult patients.

Sleep health

Sleep problems are common in PCOS across the lifespan. Both adolescents and adults with PCOS have higher rates of sleep-disordered breathing (SDB) compared to control populations⁵². In a chart review of a multidisciplinary pediatric PCOS clinic, 16% of patients had a reported diagnosis of obstructive sleep apnea (OSA), and another 59% had symptoms warranting polysomnography⁵³. Individuals with PCOS are at risk for impairment in other aspects of sleep health as well. Adolescents with PCOS have increased sleep onset latency, poorer sleep efficiency, and more daytime sleepiness than healthy peers^54,55. Similarly, adults with PCOS have greater daytime sleepiness and reduced sleep quality compared to controls^56,57. Adolescents with PCOS have later circadian timing and longer duration of melatonin secretion compared to controls with obesity⁵⁵; similar alterations in melatonin rhythms have been demonstrated in adults with PCOS⁵⁷.

Sleep health is an important consideration in PCOS given its association with cardiometabolic health outcomes. Poor sleep health, including short sleep duration, late bedtime and SDB correlated with metabolic syndrome components, and circadian misalignment was associated with worse insulin sensitivity in adolescents with PCOS^54,55. Similarly, presence of sleep disordered breathing in adults with PCOS is associated with more features of metabolic syndrome⁵².

Clinical guidelines for PCOS broadly recommend screening for SDB, particularly for patients with overweight/obesity³. Assessing for symptoms of SDB, including snoring, waking unrefreshed, and excessive daytime sleepiness is suggested (see Table 2). If screening is positive, polysomnography is the gold standard diagnostic test for OSA. While OSA is commonly recognized as a comorbidity in PCOS, other aspects of sleep health have received little attention in clinical guidelines. Given the frequency of other impairments in sleep health for patients with PCOS, screening for insomnia and other symptoms of disordered sleep such as delayed bed/wake times and poor sleep quality may also be warranted in both adolescents and adults. Referral to a sleep specialist for additional evaluation and treatment is suggested as indicated.

Gynecologic considerations

Key gynecologic concerns throughout the life course in PCOS include menstrual irregularity, endometrial cancer prevention, avoidance of unintended pregnancy, and anovulatory infertility. New gynecologic concerns appear and evolve as patients with PCOS mature. Unlike adults who often present with concerns around infertility, menstrual irregularity is a frequent complaint of adolescents with PCOS. Various patterns of menstrual irregularity may be seen in adolescents including primary amenorrhea (absence of menses at age 15 in the presence of normal growth and secondary sexual characteristics), secondary amenorrhea (absence of menses for more than three months in those with previously regular menses and for six months in those with previously irregular menses), oligomenorrhea (cycle length greater than 35 days or fewer than nine menstrual cycles per year), or excessive uterine bleeding⁵⁸. Accounting for 33% of admissions, PCOS was the most common underlying etiology identified among adolescents hospitalized with abnormal uterine bleeding and menorrhagia⁵⁹. Anovulatory menstrual cycles account for the significant increase in lifetime endometrial hyperplasia and cancer risk in PCOS³; thus, endometrial protection through either menstrual shedding or continuous progestin treatment is a key element of gynecologic care for PCOS. Continuous progestin treatment can be undertaken in the form of continuous or cyclic combined hormonal contraception (contraceptive pill, patch, or ring), levonorgestrel IUD, progestin only pills, etonogestrel implant or depot-medroxyprogesterone acetate injection. Treatment approach should be individualized accounting for comorbidities that may preclude or discourage use of estrogen containing contraception, which may arise as patients age from adolescence to adulthood. For patients not taking one of these, oligomenorrhea should be treated with a cycle of oral progestin (medroxyprogesterone acetate or micronized progesterone) to provoke a menses at least every three months.

During the transition from pediatric to adult gynecologic care, reproductive planning and sexual health may become newly or increasingly important, and menstrual management and contraception should be revisited. First, consideration should be given to whether unmanipulated menstrual observation would provide value for diagnostic clarity, and if so, what the ideal timing would be to undertake cessation of hormonal management to chart menstrual cycles over several months to assess ovulatory status. In considering this approach, providers must discuss contraceptive needs confidentially and dispel the myth that PCOS prevents pregnancy; non-hormonal contraception should be used during menstrual observation if pregnancy is not desired. If ongoing menstrual manipulation or suppression is desired or warranted, revisiting the options for menstrual management can ensure the patient is accessing optimal treatment. Second, given that medical appropriateness of menstrual management methods changes as medical history evolves and with age, the need for and appropriateness of contraceptive methods should be reassessed considering comorbidities, lifestyle, and sexual practices.

Reproductive planning should also be addressed. While young adults may not have concrete desires or plans for family building, it is valuable to begin the conversation as an opportunity to educate. Patients may need to be informed that while PCOS can be associated with difficulty conceiving, many patients with PCOS successfully conceive pregnancies without fertility treatment, and oligo-ovulatory patients can conceive unintended pregnancies. Education should include information about how to optimize natural fertility⁶⁰, and about the relationship between age and fecundability. For patients who desire, the discussion can be extended to include types of fertility testing and fertility care, such as ovulation induction and in vitro fertilization, as well as barriers to accessing this care such as cost, insurance, and policies that could prohibit access such as BMI restrictions⁶¹. Optimization of health pre-pregnancy can include discussion of metabolic health, the role of body weight and weight loss treatments on pregnancy health, and ovulation status and menstrual cycle charting. Preconception counseling and testing should be offered to patients who are interested in trying to conceive. Pregnancy outcomes in PCOS can also be reviewed.

Due to chronic anovulation and unopposed estrogen, risk of endometrial hyperplasia and eventual carcinoma is increased in patients with PCOS⁶². Other risk factors inherently present in the majority of patients with PCOS such as obesity, infertility, nulliparity, hypertension, and T2D, are additive risk factors for endometrial cancer⁶³. While menstrual manipulation or suppression is often appealing for its convenience for patients, preventing endometrial hyperplasia is a key overarching goal of menstrual monitoring and management in PCOS.

Table 2 includes assessment tools for sexual function and reproductive planning. For young adults with PCOS who conceive a pregnancy, obstetric care should be personalized to include consideration of PCOS and its association with higher risk for adverse pregnancy outcomes including early pregnancy loss, gestational diabetes, hypertensive disorders of pregnancy, fetal growth restriction, cesarean delivery, preterm birth, and peripartum mood and anxiety disorders. Postnatal care should include a transition back from pregnancy focused care to comprehensive PCOS care with a focus on menstrual, metabolic, and psychological health.

Dermatological considerations

The diagnostic criteria for PCOS includes dermatologic manifestations of hyperandrogenism, such as hirsutism, acne vulgaris, and androgenetic alopecia. Acanthosis nigricans (AN), a cutaneous sign of hyperinsulinemia, may also be present. Cutaneous manifestations are usually one of the first manifestations of PCOS and may provide early clinical clues⁶⁴. Scoring and screening tools for these dermatologic conditions are provided in Table 2.

Treatment modalities should be tailored to patient’s individual concerns and may include hormonal therapy to modulate androgen production and action and non-hormonal therapies directed toward specific dermatologic conditions. In PCOS, many, if not all, skin conditions affecting adolescents persist into adulthood. Fortunately, these conditions are routinely managed by pediatric and adult dermatologists.

Acne is highly prevalent in adolescents and young adults, affecting 85% of people between ages 12-25 years⁶⁴. It is also one of the most common features of PCOS, with a similar distribution of acne lesions to the general population⁶⁴. Of note, in patients with hirsutism, acne affects most commonly the chin, jawlines, cheeks, and trunk. Acne in PCOS tends to be more severe, and poorly responsive to first-line therapies, especially prescription topicals⁶⁴. A combination of systemic therapies including oral contraceptives (OCPs), spironolactone, oral antibiotics, or monotherapy with isotretinoin is often needed to achieve acne control⁶⁵. Some patients must continue treating acne after it clears to prevent breakouts.

Hirsutism in PCOS is associated with androgen excess and increased sensitivity of the pilosebaceous unit to androgens. The prevalence of hirsutism in PCOS ranges from 70-80%, vs. 4-11% in women in the general population⁶⁶. It is a common presenting complaint, due to social stigma⁶⁴. Management of hirsutism in PCOS is geared towards the suppression of androgen excess by combined OCPs. A second-line option for reducing androgen secretion may be metformin associated with lifestyle changes. Mild hirsutism is usually treated with a combination of non-pharmacological methods and OCPs, whereas moderate and severe hirsutism may require a combination of antiandrogens and OCPs, or, if OCPs cannot be used, antiandrogens plus a safe contraceptive method.

Androgenic alopecia (AGA)in PCOS is linked to hyperandrogenism. In patients with PCOS, the reduction of hair density is typically in the frontal and central area of the scalp. Management of AGA involves suppression of androgen excess by combined OCPs and spironolactone. Topical minoxidil 5% foam can also be added to the regimen, to increase the percentage of growing (anagen) hairs on the areas of hair thinning on the scalp.

AN was observed in 31.5% of the patients with PCOS⁵³. This skin manifestation is usually BMI-dependent, and the thickened velvet plaques on neck and flexural areas may completely resolve with weight reduction and management of IR, when present. Topical therapies with topical keratolytic agents (retinoids) and topical acids (salicylic acid, glycolic acid, urea, and/or lactic acid) can be associated with improvement, especially in mild cases.

Hidradenitis suppurativa (HS) is a chronic and debilitating skin disease that predominantly affects the skin of the intertriginous areas resulting in recurrent nodules, abscesses, sinuses, fistulas, and scarring. Obesity and PCOS are the leading causes in pediatric patients⁶⁷. Therapeutic approaches include the use of topical therapies, systemic antibiotics, hormonal therapies, and a range of immunomodulating medications⁶⁸.

With regards to other skin concerns, seborrhea was present in 43.2% of PCOS patients, mostly in the form of dandruff and mild seborrheic dermatitis, a similar prevalence to the general population⁶⁴. Keratosis pilaris, a widely prevalent condition, has been linked to increased BMI⁶⁹, and is characterized by tiny keratotic follicular papules on the outer upper arms, buttocks, thighs, and cheeks. Topical moisturizers, keratolytic agents, and retinoids may be helpful for management⁷⁰. Confluent and reticulated papillomatosis (CARP), a rare dermatologic disorder characterized by hyperpigmented papules that subsequently develop into reticulated plaques, is frequently confused with AN⁷¹. The etiology and pathogenesis of CARP is not yet fully understood, but it is often present in individuals with obesity and PCOS⁷¹. Sulfur-based washes, and oral minocycline are frequently used therapies.

Mental Health needs of PCOS patients

Disordered Eating and Body Image Concerns

Adolescents and adults with PCOS are at an increased risk for eating disorders and body image concerns³⁴. Increased androgens stimulate appetite and elevate psychological distress. High insulin levels cause low glycemia, which increases carbohydrate cravings and cycling between binge eating and compensatory behaviors, as well as contribute to long-term weight gain^72,73. Societal pressure to achieve a thin body shape, as well as weight-based stigma, contribute to internalized negative evaluations regarding shape and weight, which can contribute to disordered eating attitudes and behaviors⁷⁴. Further, binge eating symptoms and diagnosis of binge eating disorder in addition to higher BMI were significant predictors of lower health-related HRQOL in adolescents and young adult patients with PCOS⁷⁵.

Clinicians should also be aware of weight bias in treatment approaches that could worsen disordered eating and body image concerns³. When combined with lifestyle modifications, Cognitive Behavioral Therapy (CBT) and Acceptance and Commitment Therapy (ACT) are effective mental health treatments for reducing eating disorder symptoms and 5-8% of initial body weight in non-PCOS participants⁷⁶. CBT and ACT with lifestyle modifications were also efficacious at reducing PCOS-related body image concerns^77,78 and a mindfulness-based stress reduction intervention was effective in reducing depression, anxiety, and HRQOL in both adolescents and adults with PCOS⁷⁹.

Depression and Anxiety

Both adolescent and adult patients with PCOS demonstrate high rates of depressive and anxiety symptoms. Adolescents with PCOS had 3x higher rates of depressive symptoms compared to adolescents with T2D⁸⁰. Similarly, adults with PCOS had 3x greater odds of depressive symptoms and 6x greater odds of anxiety symptoms compared to BMI-matched controls⁸¹. Depressive and anxiety symptoms were further elevated in adolescents with PCOS who identified as gender diverse⁸². Greater depressive and anxiety concerns are associated with PCOS symptom severity, including higher BMI, hirsutism, and hyperandrogenism⁸¹. Furthermore, mood and anxiety concerns may also negatively impact engagement in lifestyle behaviors; one study showed that depressive symptoms were related to lower levels of physical activity in adolescents with PCOS⁸³. CBT with or without lifestyle modification may be effective for improving mood symptoms in patients with PCOS⁸⁴. Trials of CBT for adolescent females with depressive symptoms who are at risk for cardiometabolic health concerns have shown promise for decreasing depression and IR up to 1-year follow-up⁸⁵.

The 2023 guidelines recommend regular screening for depression and anxiety in patients with PCOS³. Empirically supported screenings are presented in Table 2. Assessment of mood of all patients at time of diagnosis is recommended, with timing of follow-up screening determined using clinical judgement, considering individual contextual factors such as major life stressors. Referral to mental health treatment is recommended as indicated.

Transition of Care Models

Transitions of care are a set of actions designed to ensure health care continuity, avoid preventable poor outcomes among at-risk populations, and promote the safe and timely transfer of patients from one setting to another⁸⁶. For adolescents and young adults with PCOS, transfer from pediatric to adult providers needs be purposeful and planned⁸⁷. A variety of transition care models have been reported⁸⁸. They all generally include a transition facilitator such as nurse practitioner or social worker, patient education, medication management, follow-up, and transfer of personal health records⁸⁸. The Kieler Model has been described specifically for the transition of patients with chronic endocrine disease⁸⁹. In this model, the patient is “handed over” by the pediatric endocrinologist to the adult provider during an extensive consultation, summarizing development and treatment up to this time. Depending on the complexity of the individual case, the patient is seen several times by both the pediatric and the adult provider in a joint appointment. While ideal, this approach may not be practical or feasible as patients and their families are likely to seek care across diverse healthcare systems. Appendices 1–3 offer a structure to organize a PCOS-focused transition policy, transition letter, and medical summary/care plan that can be shared across systems. The PCOS Challenge (pcoschallenge.org) also provides patients with communication strategies to share goals of care with their PCOS provider that could be utilized. Providers, care coordinators, and other clinicians involved could guide patients on how to access their medical records through electronic medical record patient portals and/or direct them to the appropriate department to request their medical records.

Assessment of a patient’s readiness to transition should consider medical, psychosocial, educational, cognitive, and emotional needs. Expectations and differences in health care delivery systems between pediatric and adult care should be discussed, including the reconfiguration of the relationship from doctor-parent-patient to doctor-patient⁸⁷. Over-involvement of parents can lead to adolescents feeling excluded from participating in their own healthcare, ultimately undermining the adolescent’s emerging autonomy⁹⁰. Parents should transition from being the “CEO” of their child’s health care to becoming the consultant, and eventually, a bystander while the child ascends from a consumer to the “CEO”⁹¹. Of note, the transition period affords the patient a unique opportunity for an educational review of PCOS, which can be beneficial to their future health⁹². Suboptimal transitions can lead to mediocre connections with adult healthcare providers that can result in poor treatment compliance and ultimately “drop-out” from health care. Lack of treatment or breaks in treatment for patients with PCOS increases long-term health risk. A sample structured workflow to transition from pediatric to adult PCOS care, built around six established core elements, is illustrated in Figure 1¹.

Figure 1.

Transition of PCOS care using the six core elements¹, a structured process of transition from pediatric to adult care models. *If a primary care clinician has already been managing PCOS, this condition will be a component of the overall transition of care plan. For a subspecialty pediatric PCOS clinician/team, this will be a coordinated effort with the primary care medical home to ensure all pieces of the patients’ PCOS care are represented in the broader transition plan. ^{^}Integration, as opposed to transfer of care, could apply for example to patients who have been followed by a family medicine clinician who can continue to see the individual across the lifespan. The primary clinician may or may not change, but the model of care delivery to match developmental age will. Abbreviation: SDoH=social determinants of health.

Patients with PCOS may also benefit from peer support as they transition from pediatric to adult care. In-person and online support groups, discussion forums, and application-based patient resources may be a way for adolescents and adults with PCOS to connect with other patients, gain personally-relevant health information, and benefit their mental health⁹³. Peer support in PCOS has been found to improve patients’ health-related self-management behaviors and communication with medical providers⁹³. A number of resources have been developed specifically for adolescents and adults with PCOS (see Panel 1).

Panel 1: Peer Support and Patient Resources.

Patients with PCOS may benefit from peer support, particularly as they transition from pediatric to adult care. Several resources have been created by patient organizations in consultation with healthcare providers and provide support groups and educational information for adolescents and adults.

• ASK PCOS – askpcos.org

• PCOS Challenge – www.pcoschallenge.org

• PCOS Awareness – www.pcosaa.org

• Verity – verity.pcos.org.uk

• Center for Young Women’s Health – www.youngwomenshealth.org

Conclusions and Recommendations

PCOS is a common disorder that affects many domains of health. Assessments of mental health, sleep and lifestyle are critical, in addition to reproductive, dermatologic and metabolic health. As individuals progress through puberty, physiologic hormonal changes can affect the presentation of PCOS. The development of autonomy during this time requires an evolving approach for lifestyle management, mental health, and sleep. The transition of care for patients must be thoughtful and coordinated, to provide optimal and continuous clinical care as needs change with development.

Key Summary.

• Transitions of care are a set of actions designed to ensure health care continuity, avoid preventable poor outcomes, and promote the safe and timely transfer of patients from the pediatric to adult health care setting.

• PCOS diagnostic criteria are different for adolescents and adults.

• PCOS treatment should be personalized, and thus will change as adolescents develop autonomy, especially as it relates to reproductive and mental health care and approaches for adopting a healthy lifestyle.

• During the transition from pediatric to adult PCOS care, different topics may become newly or increasingly important, and health education should be revisited.

Search Strategy and Selection Criteria.

References for inclusion in the narrative review were identified through PubMed searches for “PCOS,” “adolescence,” “puberty,” and “transition of care,” separately and in combination with each of the topic areas below (e.g., “diet,” “mood,” “sleep”). The international clinical practice guidelines for PCOS were prioritized. Manuscripts were limited to human studies published in English. The final reference list was compiled to include exemplar papers representative of the themes of the narrative review.