Polycystic Ovary Syndrome (PCOS) is one of the most common endocrine disorders amongst women, estimated to affect one out of 10 women. Symptoms include infertility, obesity, alopecia, acne, hirsutism and menstrual irregularities. Women with the syndrome are also more likely to experience co-morbid physical and psychological conditions such as diabetes, heart disease, endometrial cancer and also depression and anxiety. PCOS has also been found to have a negative impact on quality of life. This thesis aimed to further understanding, and improve quality of life of women with PCOS in the UK. To achieve this, the thesis aimed to investigate and identify how women with PCOS in the UK perceive and define their quality of life and to further understanding of the day-to-day experience of living with PCOS. Moreover, in order to measure quality of life, it aimed to develop and validate a UK disease-specific quality of life measure for women with PCOS. It also aimed to identify, develop and test a pilot intervention to increase quality of life in women with PCOS. To achieve these aims a mixed-methods approach was taken employing a variety of data generation and collection methods including: photovoice, online Skype™ interviews; LimeSurvey and Qualtrics. The findings of this thesis emphasise that PCOS has a negative impact on quality of life; encompassing psychological, social, environmental, and physical domains of quality of life. Women with PCOS who experienced the symptoms of infertility, hirsutism, weight, alopecia, skin discolouration, skin tags and mood swings had significantly lower scores of overall quality of life than those women who did not experience the symptoms. In addition, those women with PCOS who had a diagnosis of anxiety and/or depression had reduced quality of life. The dissemination of these findings will enable health care professionals to better understand the experience of living with PCOS and its impact on quality of life. Moreover, this thesis identifies many areas for future research which will enable a better understanding of the impact of PCOS on quality of life. Finally, this thesis makes recommendations for clinical practice which include improvement of support from health care professionals for women with PCOS in order to help them better manage their symptoms, and therefore improve their overall quality of life.

Abstract Oligomenorrhea (menstrual disturbances) and hirsutism (excessive growth of body hair) are typical symptoms of polycystic ovary syndrome, a common endocrine disorder with long-term health risks among fertile-age women. Associations between body size development and polycystic ovary syndrome symptoms in a cohort design (528 symptomatic and 1479 asymptomatic women) and endocrine, metabolic and clinical characteristics of women with self-reported symptoms of oligomenorrhea or hirsutism in a nested case-control design (518 cases and 1036 controls) were investigated in this general population-based study. Gynecologic ultrasonographic examinations were performed in 196 cases and 67 controls to assess the morphology of the ovaries and its relationship to biochemical and clinical parameters. The study population was derived from the Northern Finland Birth Cohort 1966, which included all births with expected birth dates in 1966 in Northern Finland and is well representative of the general female population. Polycystic ovary syndrome symptoms in adulthood were associated with obesity, particularly abdominal obesity, in adolescence and in adulthood, but not with birth weight or being small for gestational age. Hormonal changes typical of polycystic ovary syndrome, i.e. higher circulating concentrations of testosterone, luteinizing hormone (LH) and insulin and lower levels of sex hormone-binding globulin (SHBG), were detected in women with self-reported symptoms of oligomenorrhea and/or hirsutism compared with the controls. Less favorable metabolic cardiovascular disease risk factor profiles, higher body mass index (BMI), waist-hip ratio (WHR), and triglyceride and C-reactive protein (CRP) concentrations and lower high density lipoprotein cholesterol (HDL-C) levels, were detected in women with symptoms, being the most severe among women who reported both hirsutism and oligomenorrhea. Unfavorable characteristics were pronounced in the presence of overweight or obesity. Women with symptoms more often had features characteristic of polycystic ovarian morphology associated with an endocrine and clinical profile reflecting polycystic ovary syndrome. This study shows that questioning in regard to symptoms of oligomenorrhea and hirsutism is useful in detecting women at risk of polycystic ovary syndrome and associated health risks. Avoidance of being overweight is important among young women to prevent the development of insulin resistance. Systematic follow-up of women with symptoms of oligomenorrhea and hirsutism is justified for prevention and early detection of long-term health risks.

Abstract Most women with polycystic ovary syndrome (PCOS) exhibit features of metabolic syndrome, including insulin resistance, abdominal obesity, dyslipidaemia, glucose intolerance and low-grade chronic inflammation, reflected in elevated levels of serum C-reactive protein (CRP), placing these women at increased risk of cardiovascular disease and type 2 diabetes (type 2 DM). The aim of this study was to investigate the effects of two well-known insulin-lowering drugs used in the treatment of type 2 DM, metformin and rosiglitazone, on traditional cardiovascular risk factors and inflammation in women with PCOS. In addition, the impact of rosiglitazone was evaluated as regards clinical, endocrine and metabolic aspects of PCOS. Six-months of metformin treatment in women with PCOS had beneficial effects on levels of CRP, lipid profile and blood pressure, expressed as increased levels of high-density lipoprotein cholesterol (HDL-C), and decreased levels of triglycerides (TGs), decreased ratio of total cholesterol/HDL-C, decreased levels of CRP, and decreased systolic and diastolic blood pressures. Four-month treatment with rosiglitazone in a randomised, double-blind, placebo-controlled study in overweight women with PCOS resulted in significant improvements in menstrual cyclicity, hyperandrogenism, insulin resistance and hyperinsulinaemia. In addition, rosiglitazone decreased levels of markers of low-grade inflammation, CRP and white blood cell (WBC) count, and the liver function marker alanine aminotransferase (ALAT), while having neutral effects on levels of lipids, and blood pressure. In conclusion, metformin treatment, in accordance with the known beneficial metabolic effects of this drug, could be useful in the prevention of cardiovascular complications in women with PCOS. Rosiglitazone represents an alternative treatment for overweight anovulatory women with PCOS. It could be useful in the prevention of type 2 DM in overweight women with PCOS and for those suffering from possible side-effects related to metformin treatment. In addition, alleviation of inflammation and improvement of liver function during rosiglitazone treatment may indicate decreased future risks of cardiovascular diseases and non-alcoholic fatty liver disease (NAFLD).

BACKGROUND: Polycystic Ovary Syndrome (PCOS) is the most common endocrine disorder affecting women of reproductive age. It is characterized by oligomenorrhea/menstrual irregularity, androgen excess, and polycystic ovary morphology. Currently there are three distinct diagnostic criteria used to ascertain PCOS in the population: The National Institutes of Health (NIH) criteria created in 1990 and later reviewed in 2012, the Rotterdam criteria established in 2003, and the most recent criteria by the Androgen Excess & PCOS Society (AE-PCOS) criteria developed in 2006. Some prevalence studies suggest that PCOS affects 6.5-8% of the population while others state 10-20% qualify for a PCOS diagnosis. Recent literature shows patients with PCOS have a 43% prevalence rate or 2-fold higher rate than the age-adjusted sample of all ages in the general US population of developing Metabolic Syndrome (Met-S ) (Apridonidze et al. 2005; Essah, Wickham, and Nestler 2007). This is important because it can alert physicians to refer their PCOS patients to a nutritionist or endocrinologist as a preventive measurement. OBJECTIVES: This thesis based on The Ovulation and Menstruation Health (OM) Pilot Study, sets out to accomplish the following: ascertain the prevalence of PCOS in different racial/ethnic groups, determine Body-Mass Index (BMI) distribution patterns in PCOS participants based on how they were diagnosed (by a physician/self-diagnosed), and most importantly to determine the prevalence of Met-S risk factors in PCOS vs. Non-PCOS groups. METHODS: The (OM) Pilot Study is an online survey with clinical, community, and online recruitment. After a consent and screening process, the survey asks questions related to demographics, anthropometrics, menstrual cycles, contraceptive history, medications and supplement use, PCOS, reproductive health, general health, diet and lifestyle and lastly, pregnancy and birth history. The questions in this online survey, were designed for an 8th-grade reading level to improve comprehension by a diverse cohort of women. This was done to help address the lack of diversity and PCOS ascertainment in pre-existing cohorts. RESULTS: Following recruitment for The OM Pilot Study, 388 participants completed the consent form and 4 declined consent. 384 completed screener and 34 were deemed not eligible because: 18 were no longer menstruating and 16 were unable/unwilling to provide an email address to the receive survey; thus 350 were eligible. Of those 350 participants that were deemed eligible, only 283 started survey. 283 individuals determined to be eligible based on their gender, capacity to menstruate, and age started the survey. Age eligibility was ≥18 years old. 249 completed the survey through its last section (XIII. Pregnancy & Birth History). Of the 283 participants who enrolled and were eligible to partake in the study, 177 (64.1%) identified as White, 22 (7.97%) as Hispanic/Latina/Spanish Origin, 34 (12.3%) as Black/African American, 4 (1.4%) as East Asian, 5 (1.8%) as Southeast Asian, 7 (2.5%) as South Asian, 27 (9.8%) selected more than 1 race/ethnicity, and 7 (2.5%) chose not to answer (Table 5). Participants from the PCOS group had higher prevalence for all the risk factors for Met-S when compared to Non-PCOS group: abdominal fat determined as those who tend to gain weight around stomach/waist (73% versus 60%), abdominal fat ascertained by body figure (33% versus 17%), hypertension (6.9% versus 3.1%), high cholesterol (20.7% versus 8.8%), diabetes (5.3% versus 1.0%), non-alcoholic fatty liver disease (NAFLD) (5.2% versus 0.5%), and lastly sleep apnea (SA) (5.2% versus 2.1%). More noticeably is the absolute difference in prevalence in abdominal fat as determined by the body figure image in which the PCOS group (33%) had a 16% higher prevalence than the Non-PCOS group (17%). Participants that reported having PCOS diagnosed by a physician (37) had a higher prevalence of overweight/obese women (73%) than those that self-diagnosed (23) with PCOS (56.5%). CONCLUSIONS: The OM Pilot Study has demonstrated that it is possible to launch and recruit a diverse sample group representative of the actual population. With this new tool, future studies can better assess risk factors associated with Met-S in PCOS patients taking into consideration their racial/ethnic background.

INTRODUCTION: Polycystic Ovary Syndrome (PCOS) is the most common endocrinopathy causing infertility in women of reproductive age. According to the Rotterdam criteria, a PCOS diagnosis should be given if at least two of the following are met: 1) hyperandrogenism; 2) oligo-anovulation; and 3) polycystic ovarian morphology. Previous studies analyzing the prevalence of PCOS have done so in unselected and clinical populations but few studies have attempted to characterize the syndrome and its long-term outcomes within Electronic Health Records using International Classification of Disease (ICD) codes. OBJECTIVES: With a hospital-based electronic health record dataset, this thesis seeks to: (1) characterize PCOS in reproductively aged women (18-34) using the diagnostic codes (ICD-9 and ICD-10) versus the Rotterdam criteria, (2) determine the prevalence of metabolic syndrome (MetS), Type 2 Diabetes, and cardiac events in women above age 35, (3) determine age of diagnosis for MetS and time to diagnosis of MetS. METHODS: The following 3 cohorts were queried on the Research Patient Data Registry (RPDR): 1) patients aged 18-34 with classic PCOS (phenotype A and B) but without an ICD diagnosis for PCOS, 2) patients aged 18-34 with a PCOS ICD-9/10 diagnosis and 3) patients above age 35 with a history or current diagnosis of PCOS. Their electronic health records (between January 1 , 2003 and December 31 , 2020) were ascertained from 9 Mass General Brigham institutions after IRB approval and analyzed on Software for Statistics and Data Science (STATA). RESULTS: Overall, RPDR identified 12,669 patients aged 18-34 who fit the Rotterdam criteria (under multiple phenotypes), 4646 of which had classic PCOS but lacked an ICD- 9/10 code for PCOS. RPDR also identified 9341 women aged 35 and above with a past or current diagnosis of PCOS. Hispanics/Latinas (18-34) were two times more likely to be undiagnosed when compared to Non-Hispanic Whites (OR: 2.25, 95% CI: 1.98-2.56). The prevalence of MetS, specified by a diagnostic code (277.7 or E88.81), and other cardiac conditions in women above age 35 were considerably lower than those found in the current literature. CONCLUSION: Databases such as RPDR allow for a detailed analysis of patient demographics, labs, procedures and diagnoses. Additionally, it allows for larger cohorts of patients matching more specific criteria to be ascertained. Future studies should compare the prevalence of individual features of MetS by ICD codes and analyze the cardiology reports to determine if the events are being reported but not codified. / 2023-11-30

Bakgrund: Polycystiskt ovariesyndrom (PCOS) är en endokrin rubbning och reproduktionsstörning med ärftliga komponenter som drabbar omkring 10 procent av alla kvinnor. Syftet med denna uppsats var att få en forskningsöverblick över vilken betydelse AMH (Anti- Müllerskt hormon) har som klinisk markör vid in vitro-behandling hos kvinnor med PCOS. AMH är en viktig regulator i follikelbildning i ovarierna och det finns en välkänd korrelation mellan nivån av AMH och antal antrala folliklar. Metod: Metoden som använts i denna uppsats är en forskningsöversikt. Relevanta artiklar söktes genom att använda Pub Med. Sökningen begränsades till kliniska studier relevanta för studiens syfte och frågeställning och som publicerats under de senaste 5 åren. Resultatet blev 29 artiklar. Av dessa valdes 5 kliniska studier ut baserat på relevansen till syftet med studien samt frågeställningen. Studierna var av olika studiemetodik. Studiernas fokus låg på forskning kring AMH som klinisk markör samt dess inverkan vid fertiliteten hos kvinnor med och utan PCOS. Resultat: Studierna visade enhetligt att koncentrationen av AMH i follikelvätskan samt serum är betydligt högre i kvinnor med PCOS jämfört med kvinnor med normala endokrina parametrar. Resultatet av studierna visade också att AMH har betydelse vid valet av dominerande follikel samt att AMH-serum och antalet befruktade oocyter i IVM (in vitro-mognad) var oberoende prediktiva faktorer för levande födslar. Resultatet visade också att AMH kunde användas för att förutsäga klinisk graviditet men att den inte var en stark indikator för det. Slutsats: Intrafollikulär produktion av AMH har en betydande roll i de parametrar som styr den follikulära miljön när det gäller follikeldifferentiering, utveckling samt urval vid in vitro-behandlingar. Höga nivåer av AMH i follikelvätskan och även i serum hos kvinnor med PCOS kan visa på en positiv follikelmognad samt vara en markör för stimulansrespons. Slutsatsen är att studierna visar att AMH är en betydande klinisk markör som kan användas vid in vitro-behandlingar hos kvinnor med PCOS. / Background: Polycystic ovary syndrome (PCOS) is a genetic predisposition that is the leading cause of infertility and affects about 10 % of all women. The purpose of this essay was to get a research overview of the importance of AMH (Anti-Müllerian hormone) as a clinical marker in in-vitro treatments in women with PCOS. AMH is an important regulator of folliculogenesis in the ovaries and there is a well-known correlation between the level of AMH and number of antral follicles Method: The method used in this study was a research overview. Relevant articles were searched using PubMed. The search was limited to clinical studies with a focus related to the aim of the present study and published within the past five years. The result was 29 articles. Of these 5 clinical studies were selected based on the relevance to the aims of this study. The studies were of different study methodology. The focus of the studies was on research on AMH as a clinical marker and its effect on fertility in women with and without PCOS. Results: The studies showed a consistent result in that the AMH concentration in the follicle fluid and serum is significantly higher in women with PCOS compared to women with normal endocrine parameters. The results of the studies also showed that AMH is important in the choice of dominant follicles and that AMH serum and the number of fertilized oocytes in IVM (in vitro-maturation) are independent predictive factors for live births. The results also showed that AMH could be used to predict clinical pregnancy but was not a strong indicator of it. Conclusion: Intra follicular production of AMH has a significant role in the parameters that control the follicular environment in terms of follicle differentiation, development, and selection in in vitro treatments. High levels of AMH in the follicle fluid and in serum of women with PCOS may indicate a positive follicle maturation, The conclusion is that the studies showed that AMH is a significant clinical marker that can be applied to in vitro treatments in women with PCOS.

INTRODUCTION: Polycystic Ovary Syndrome (PCOS) is a reproductive and endocrine disorder common among women of reproductive age. It is characterized by elevated androgen levels, menstrual irregularities, and several cysts ranging from 2 to 9 mm on one or both ovaries. PCOS is prevalent in approximately 10% of women typically between the ages of 18-44. It is significantly underdiagnosed due to variation in disease manifestation. Treatment for PCOS includes oral contraceptives, Metformin, and Spironolactone. However, supplements such as zinc and magnesium are increasingly promising additions to PCOS treatment regimens to manage symptoms and co-morbid chronic diseases. The objective of this thesis is to determine the prevalence of supplement use as a treatment for PCOS in the Ovulation and Menstruation Health Pilot Study (OM). The OM Pilot study is an epidemiological, online survey that aims to study the characteristics and determinants of female reproductive diseases in a diverse population. This thesis also explores the overall role of nutrition in PCOS management. METHODS: The goal of the OM Pilot Study is to determine women’s gynecological health outcomes in a multi-ethnic cohort and to characterize the lifestyle, health, and menstrual risks of reproductive diseases such as polycystic ovary syndrome, endometriosis, and uterine fibroids. The eligibility criteria included: being of reproductive age, having the ability to menstruate, being able to read in English, and having a working email address to receive the link to the survey. The survey and questions were designed by a board-certified reproductive endocrinology and infertility specialist at Boston Medical Center and was administered through REDCap, a cloud-based clinical software application for building and managing online surveys and databases. The questionnaire was comprised of each of the following sections: Demographics, Baseline Questionnaire, Anthropometrics, Menstrual Cycle, Contraceptive History, Health and Body, Polycystic Ovary Syndrome, Reproductive Health Questions, General Health Questions, Diet and Lifestyle, and Pregnancy and Birth History. Participants were recruited from multiple cities across the United States using in-person recruiting methods, online recruitment through a link, flyers, posters, word-of-mouth, and advertisements on Facebook and other social media websites such as Twitter and LinkedIn. Consenting participants were entered into a raffle to win a $200 gift card. Data analysis was conducted on SAS 9.4 and manually as needed. RESULTS: In terms of prevalence of PCOS: Of the 249 women who completed the survey, 60 women self-reported to having polycystic ovary syndrome (37 were diagnosed by a physician and 23 diagnosed by self). And of those 60 women who reported having PCOS, 24 reported taking medication for PCOS and out of these women, 10 women reported taking one, two, or three of the supplementary treatment options. Of the 60 women with PCOS, 4 women currently take a multivitamin for PCOS, 2 women currently take a dietary supplement, 2 women currently take herbal remedies, and 4 women reported drinking spearmint tea to help with PCOS management. Additionally, out of the 60 women who reported yes to having PCOS whether they were diagnosed by a physician and self-diagnosed, 11 women also reported yes to having an eating disorder. Of those 11 women, 7 women have anorexia, 7 women have bulimia, and 4 women have binge eating disorder. CONCLUSION: In this thesis, the prevalence rates of PCOS diagnoses, supplement use among PCOS patients, and eating disorders among PCOS patients were determined. Based on current literature on the effectiveness of supplements on PCOS symptoms, it seems advisable to study the effects of supplements further to incorporate them into treatment. With additional research, medical personnel such as physicians and registered dietitians should consider adding supplements to treatment regimen for PCOS. A personalized diet and exercise plan along with a plan to treat mental health to curb the prevalence of eating disorders may be beneficial to add to the treatment regimen for PCOS.

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OBJECTIVE: After comparing the top 10 menstrual tracking applications, there are no applications that address symptoms specific to Polycystic Ovary Syndrome (PCOS). This thesis demonstrates the need for a comprehensive menstrual tracking application that caters toward all populations, including patients with PCOS. METHODS: Mobile application usage was evaluated through data from the Ovulation and Menstruation (OM) Health Study to view relationships between PCOS/demographic groups and preference for tracking methods. The top 10 most popular mobile menstrual tracking applications were compiled through a search on the iOS operating system. Mobile menstrual tracking applications were then evaluated through an adapted APPLICATIONS system, which includes categories to score for PCOS-specific symptoms. RESULTS: PCOS groups showed clear preference for tracking methods overall, and are more likely to view their own health as fair/poor. P values for tests between other demographic variables in the OM Health study were insignificant, but there are observable trends in education, income, and age and usage of tracking methods. Evaluation of the top 10 mobile menstrual applications resulted in Clue scoring the highest, but no applications scored a complete PCOS-specific score. CONCLUSIONS: With continual variance in menstrual cycles, there needs to be development of a mobile menstrual application that is effective for all populations. Mobile menstrual applications have proven their popularity through PCOS groups and the rising usage within younger age groups. However, through the adapted APPLICATIONS system, major features are still missing, and are necessary to cater towards unique groups such as people with menstrual irregularities and PCOS.

Polycystic ovary syndrome (PCOS) is a chronic condition that affects 6-18 % of all fertile women, PCOS manifests itself through various clinical symptoms, such as hirsutism and obesity. It is also a contributing factor to irregular menstrual cycles, which has an impact on life and future pregnancies. The aim of the literature study was to describe the experiences of women living with PCOS. A systematic literature review was conducted, which resulted in the selection of ten scientific articles. The result of the study is based on three categories: The women’s self-image, the women’s physical and mental well-being and the women’s experience of support. The results of the literature study describe the way the women perceived themselves based on clinical symptoms such as hirsutism and obesity. The experience of the symptoms, the reduced fertility and the constant comparisons made with other women were based on society’s norms. This later on had an emotional impact on women´s physical and mental well-being. In conclusion the women found support through support groups, family members and information online. However, the women perceived a lack of support from healthcare professionals. If healthcare professionals can gain a greater understanding of how women with PCOS experience their symptoms, they can in this way contribute to more person-centred care. / Polycystiskt ovarialsyndrom (PCOS) är ett kroniskt syndrom som drabbar 6-18 % av alla fertila kvinnor. PCOS visar sig genom olika kliniska symtom, såsom hirsutism, övervikt och är en bidragande faktor till oregelbundna menstruationer, vilket kan påverka livet samt bidra till svårigheterna att bli gravid. Litteraturstudiens syfte var att beskriva kvinnors upplevelser och erfarenheter av att leva med PCOS. En systematisk litteratursökning genomfördes vilket resulterade i tio utvalda vetenskapliga artiklar. I resultatet framkom tre kategorier: Kvinnornas självbild, Kvinnornas fysiska och psykiska mående och Kvinnornas upplevelse av stöd. Kategorierna beskriver hur kvinnorna såg på sig själva utifrån hirsutism, övervikt och andra kliniska symtom. Kvinnorna beskrev upplevelsen kring symtomen, infertiliteten samt de ständiga jämförelserna kvinnorna gjorde med andra kvinnor utifrån samhällets normer. Den emotionella upplevelsen bidrog till en fysiskt och psykisk påfrestning på kvinnornas mående. Sammanfattningsvis fann kvinnorna stöd genom bland annat stödgrupper, familj och information på internet, däremot upplevde de brist på stöd från hälso- och sjukvårdspersonal. Genom denna litteraturstudie kan hälso- och sjukvårdspersonal få en ökad förståelse över vad kvinnor med PCOS upplever gällande sina symtom och på detta sätt bidra till en mer personcentrerad omvårdnad.