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A Theoretically Grounded Exploration of Individual and Family Self-Management of Polycystic Ovary Syndrome in Adolescents
Abstract
Polycystic ovary syndrome (PCOS) is highly prevalent and increasingly diagnosed during adolescence. This study explored the context and processes of self-management among adolescents, and parents of adolescents, who have PCOS. Adolescents with PCOS (n = 7) and their parents (n = 8) participated in a series of focus groups. Deductive thematic analysis was guided by the Individual and Family Self-Management Theory (IFSMT), and the patterns that were identified aligned with the contexts and processes described therein. A secondary inductive approach was employed as a novel contextual pattern emerged: psychological health and well-being. Study findings suggest that adolescents and their families have a desire to engage in optimal self-management, and particularly effective strategies may consider a holistic, family intervention approach that addresses psychological health and well-being in addition to behavior change. Study findings are the first to reflect the unique needs of adolescents with PCOS and their families.
... In previous studies, most researchers have applied IFSMT to populations with conditions such as epilepsy, 11 HIV/ AIDS, 18 adolescent polycystic ovary syndrome (PCOS), 19 and heart failure. 20 However, there has been no research found that applies this theory to patients with Meige Syndrome. ...
Objective
This study aimed to analyze the real experiences of patients with Meige Syndrome, which is an idiopathic dystonia, during the perioperative period and to explore the practical application and effectiveness of Individual and Family Self-Management Theory (IFSMT) in improving patient experiences.
Methods
A qualitative descriptive research methodology was employed to elucidate the intricate psychological and social experiences encountered by patients with Meige Syndrome throughout the perioperative phase. This study conduct face-to-face, one-on-one, semi-structured interviews with 16 Meige Syndrome patients to gain an in-depth understanding of the patients’ true feelings and needs. Interview data were organized and analyzed using Colaizzi’s method, and themes were refined in conjunction with IFSMT to reveal patients’ self-management practices and influencing factors.
Results
Through in-depth analysis using Colaizzi’s method and the application of IFSMT to the perioperative experiences of patients with Meige Syndrome, and reported according to COREQ standards, three core themes were identified: (1) Context Dimension (specific disease factors, physical and social environmental factors, personal and family factors), (2) Process Dimension (knowledge and beliefs, self-regulation and self-efficacy, social facilitation), and (3) Outcome Dimension (proximal and distal outcomes of self-management behaviors).
Conclusion
This study demonstrates that IFSMT has significant application value in the perioperative experiences of patients with Meige Syndrome. Enhancing patients’ knowledge, beliefs, self-regulation abilities, and social support can promote effective self-management behaviors, thereby improving their quality of life and health status. Additionally, the study reveals the complexity of self-management in perioperative patients, emphasizing the importance of interdisciplinary collaboration and comprehensive interventions in enhancing patient experiences. Future research can further explore how to apply these theories in clinical practice to optimize perioperative management and rehabilitation processes for patients with Meige Syndrome.
Polycystic ovary syndrome (PCOS) is an endocrine disorder affecting 10–13% of reproductive‐aged women. Lifestyle management through diet and physical activity changes can improve reproductive, metabolic, and psychological comorbidities. The aim of this systematic review is to understand the barriers and facilitators to lifestyle changes from the perspective of people with PCOS and health care professionals (HCP) using the theoretical domains framework and capability, opportunity, motivation, and behavior model. Six databases were systematically searched for qualitative, quantitative, and mixed‐methods studies to 22nd September 2022. Quantitative outcomes from quantitative and mixed‐methods studies were narratively synthesized and all studies were thematically analyzed. Sixty‐eight papers met the eligibility criteria. HCP education on lifestyle management in PCOS was viewed by all to be inadequate, impacting the quality of care and health outcomes. Lifestyle advice delivered by a multidisciplinary team, including dietitians, was identified as a key component for change. All agreed that there was a need for individualized and PCOS‐specific lifestyle advice. Weight stigma was identified as negatively impacting both those in larger and smaller bodies with PCOS, reducing the quality of care and affecting self‐perception and mental health. People with PCOS perceived that lifestyle management was overly focused on weight loss and fertility, independent of their own personal motivations and goals. Systemic changes, including increasing HCP education on lifestyle management and multidisciplinary collaboration, focusing on lifestyle advice that meets individual needs, and reducing the use of weight‐centric care are necessary for long‐term sustainable changes and improvements in health outcomes in people with PCOS.
Objective:
Polycystic Ovary Syndrome (PCOS) is a common endocrine condition with a complex diagnostic process. The present study aims to understand patient perceptions of the process of PCOS diagnosis, and how challenges during diagnosis can influence patient understanding of PCOS and trust in healthcare providers (HCPs).
Methods:
A scoping review framework was followed. Six databases were searched for patient experiences of PCOS diagnosis, between January 2006 - July 2021. Data extraction and thematic analyses were conducted.
Results:
Of the 338 studies screened, 21 studies fulfilled the inclusion criteria. Patient experiences of the diagnostic process were stratified into three themes: emotional, negotiating, and incomplete. As a result of these experiences, patients begin to perceive their HCPs as lacking knowledge and empathy.
Conclusion:
There are prevailing gaps in how PCOS diagnostic criteria are understood and applied in the clinical setting, leading to a lengthy diagnostic process. Additionally, poor HCP communication negatively affects patient trust in HCPs.
Practice implications:
Practicing patient-centered care and empowering patients by addressing their specific information needs are essential to improving the diagnostic experience and care of individuals living with PCOS. These recommendations may also apply to the diagnosis of other complex chronic conditions.
Study Objective
The purpose of this study was to examine feasibility, acceptability, and preliminary efficacy of a mindfulness-based healthy lifestyle self-management intervention with adolescents and young adults diagnosed with polycystic ovary syndrome (PCOS).
Design
A pilot randomized controlled trial using a pre-post design was used.
Setting
Central Texas. Participants: Individuals aged 14-23 with a diagnosis of PCOS.
Interventions
The PCOS Kind Mind Program integrates a manualized mindfulness training program (Taming the Adolescent Mind) with health education in four key areas of self-management and health promotion; (1) medication adherence, (2) nutrition, (3) physical activity, and (4) sleep.
Main Outcome Measures
Psychological distress, mindfulness, physical activity strategies, nutrition and exercise self-efficacy.
Results
Linear regression models revealed that those in the PCOS Kind Mind condition reported significantly higher nutrition self-efficacy (β = 6.50, 95% CI = 1.71 – 11.28, p = 0.013, d = 0.48), physical activity strategies (β = 0.41, 95% CI = 0.04 – 0.79, p = 0.040, d = 0.67), and physical activity self-efficacy (β = 0.48, 95% CI = 0.07 – 0.88, p = 0.028, d = 0.46).
Conclusion
The PCOS Kind Mind Program improved self-efficacy in the key areas of nutrition and physical activity and increased physical activity strategies in adolescents and young people with PCOS. These findings are encouraging and suggest the need for larger scale, randomized controlled trials with longer-term follow-up in order to more robustly evaluate the PCOS Kind Mind Program on the psychological and physiological health of adolescents and young people with PCOS.
Designing and conducting effective intervention research is an important domain of nursing science. Nurse scientists have long recognized people with chronic conditions need effective self-management strategies across the lifespan, so they have led the way in establishing theoretical and practical grounds for the science of self-management. Guidance from pilot and feasibility research for self-management interventions is scarce. Documented exemplars of successes and failures in pilot and feasibility study designs are scant in the literature.
The purpose of this paper is to illustrate methodological approaches using pilot and feasibility examples. To maximize collective lessons learned in self-management science study design, features of our pilot and feasibility research strategies that yielded both desirable and undesirable outcomes are described, analyzed, and paired with alternative solutions.
A National Institute of Nursing Research P30 grant center, awarded grants to 8 pilot investigators to pilot self-management interventions. A wide variety of chronic conditions were addressed, including heart failure, chronic kidney disease, multiple sclerosis, diabetes, and HIV. The investigators provided their experiences of study implementation. Common themes across the studies were identified.
There were four lessons learned from these studies: 1) maximize resources and develop enough evidence for subsequent studies; 2) embed patient-centered feasibility within implementation testing with new patient populations; 3) develop a flexible participant recruitment plan to allow for adjustments when unexpected barriers arise; and 4) define study-specific data collection procedures to demonstrate feasibility.
Researchers conducting preliminary small-scale self-management intervention research must balance resources to develop and implement interventions to meet pilot and feasibility objectives.
Context
Polycystic ovary syndrome (PCOS) is characterized by hyperandrogenism and subfertility but the effects on mental health and child neurodevelopment are unclear.
Objectives
To determine if (i) there is an association between PCOS and psychiatric outcomes, and (ii) whether rates of autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) are higher in children of mothers with PCOS.
Design
Data were extracted from the Clinical Practice Research Datalink. Patients with PCOS were matched to two control sets (1:1) by age, BMI and primary care practice. Control set 2 was additionally matched on prior mental health status. Primary outcomes were the incidence of depression, anxiety and bipolar disorder. Secondary outcomes were the prevalence of ADHD or ASD in the children.
Results
16,986 eligible patients were identified; 16,938 and 16,355 were matched to control sets 1 and 2 respectively. Compared to control set 1, baseline prevalence was 23.1% versus 19.3% for depression, 11.5% versus 9.3% for anxiety and 3.2% versus 1.5% for bipolar disorder (p<0.001). The hazard ratio for time to each endpoint was 1.26 (95% CI 1.19-1.32), 1.20 (1.11-1.29) and 1.21 (1.03-1.42) for set 1, and 1.38 (1.30-1.45), 1.39 (1.29-1.51) and 1.44 (1.21-1.71) for set 2. The odds ratios for ASD and ADHD in children were 1.54 (1.12-2.11) and 1.64 (1.16-2.33) for set 1, and 1.76 (1.27-2.46) and 1.34 (0.96-1.89) for set 2.
Conclusions
PCOS is associated with psychiatric morbidity and increased risk of ADHD and ASD in their children. Screening for mental health disorders should be considered during assessment.
A qualitative description design is particularly relevant where information is required directly from those experiencing the phenomenon under investigation and where time and resources are limited. Nurses and midwives often have clinical questions suitable to a qualitative approach but little time to develop an exhaustive comprehension of qualitative methodological approaches. Qualitative description research is sometimes considered a less sophisticated approach for epistemological reasons. Another challenge when considering qualitative description design is differentiating qualitative description from other qualitative approaches. This article provides a systematic and robust journey through the philosophical, ontological, and epistemological perspectives, which evidences the purpose of qualitative description research. Methods and rigor issues underpinning qualitative description research are also appraised to provide the researcher with a systematic approach to conduct research utilizing this approach. The key attributes and value of qualitative description research in the health care professions will be highlighted with the aim of extending its usage.
EXECUTIVE SUMMARY
Polycystic Ovary Syndrome (PCOS) is recognized as the most common endocrine disorder of reproductive-aged women around the world. This document, produced by the collaboration of the American Association of Clinical Endocrinologists (AACE) and the Androgen Excess and PCOS Society (AES) aims to highlight the most important clinical issues confronting physicians and their patients with PCOS. It is a summary of current best practices in 2015.
PCOS has been defined using various criteria, including menstrual irregularity, hyperandrogenism, and polycystic ovary morphology (PCOM).
General agreement exists among specialty society guidelines that the diagnosis of PCOS must be based on the presence of at least two of the following three criteria: chronic anovulation, hyperandrogenism (clinical or biological) and polycystic ovaries.
There is need for careful clinical assessment of women's history, physical examination, and laboratory evaluation, emphasizing the accuracy and validity of the methodology used for both biochemical measurements and ovarian imaging.
Free testosterone (T) levels are more sensitive than the measurement of total T for establishing the existence of androgen excess and should be ideally determined through equilibrium dialysis techniques. Value of measuring levels of androgens other than T in patients with PCOS is relatively low.
New ultrasound machines allow diagnosis of PCOM in patients having at least 25 small follicles (2 to 9 mm) in the whole ovary. Ovarian size at 10 mL remains the threshold between normal and increased ovary size.
Serum 17-hydroxyprogesterone and anti-Müllerian hormone are useful for determining a diagnosis of PCOS.
Correct diagnosis of PCOS impacts on the likelihood of associated metabolic and cardiovascular risks and leads to appropriate intervention, depending upon the woman's age, reproductive status, and her own concerns. The management of women with PCOS should include reproductive function, as well as the care of hirsutism, alopecia, and acne.
Cycle length >35 days suggests chronic anovulation, but cycle length slightly longer than normal (32 to 35 days) or slightly irregular (32 to 35-36 days) needs assessment for ovulatory dysfunction. Ovulatory dysfunction is associated with increased prevalence of endometrial hyperplasia and endometrial cancer, in addition to infertility. In PCOS, hirsutism develops gradually and intensifies with weight gain. In the neoplastic virilizing states, hirsutism is of rapid onset, usually associated with clitoromegaly and oligomenorrhea.
Girls with severe acne or acne resistant to oral and topical agents, including isotretinoin (Accutane), may have a 40% likelihood of developing PCOS.
Hair loss patterns are variable in women with hyperandrogenemia, typically the vertex, crown or diffuse pattern, whereas women with more severe hyperandrogenemia may see bitemporal hair loss and loss of the frontal hairline.
Oral contraceptives (OCPs) can effectively lower androgens and block the effect of androgens via suppression of ovarian androgen production and by increasing sex hormone–binding globulin.
Physiologic doses of dexamethasone or prednisone can directly lower adrenal androgen output. Anti-androgens can be used to block the effects of androgen in the pilosebaceous unit or in the hair follicle. Anti-androgen therapy works through competitive antagonism of the androgen receptor (spironolactone, cyproterone acetate, flutamide) or inhibition of 5α-reductase (finasteride) to prevent the conversion of T to its more potent form, 5α-dihydrotestosterone. The choice of antiandrogen therapy is guided by symptoms.
The diagnosis of PCOS in adolescents is particularly challenging given significant age and developmental issues in this group. Management of infertility in women with PCOS requires an understanding of the pathophysiology of anovulation as well as currently available treatments.
Many features of PCOS, including acne, menstrual irregularities, and hyperinsulinemia, are common in normal puberty. Menstrual irregularities with anovulatory cycles and varied cycle length are common due to the immaturity of the hypothalamic-pituitary-ovarian axis in the 2- to 3-year time period post-menarche. Persistent oligomenorrhea 2 to 3 years beyond menarche predicts ongoing menstrual irregularities and greater likelihood of underlying ovarian or adrenal dysfunction.
In adolescent girls, large, multicystic ovaries are a common finding, so ultrasound is not a firs-tline investigation in women <17 years of age.
Ovarian dysfunction in adolescents should be based on oligomenorrhea and/or biochemical evidence of oligo/anovulation, but there are major limitations to the sensitivity of T assays in ranges applicable to young girls.
Metformin is commonly used in young girls and adolescents with PCOS as first-line monotherapy or in combination with OCPs and anti-androgen medications. In lean adolescent girls, a dose as low as 850 mg daily may be effective at reducing PCOS symptoms; in overweight and obese adolescents, dose escalation to 1.5 to 2.5 g daily is likely required.
Anti-androgen therapy in adolescents could affect bone mass, although available short-term data suggest no effect on bone loss.
Abbreviations: 17OHP = 17 hydroxyprogesterone 5αR = 5α-reductase AA = androgenic alopecia AES = Androgen Excess Society AMH = anti-Müllerian hormone BMI = body mass index CV = cardiovascular DHT = 5α-dihydrotestosterone FG = Ferriman- Gallwey LH = luteinizing hormone MetS = metabolic syndrome MS = mass spectrometry NIH = National Institutes of Health OCP = oral contraceptive PCOM = polycystic ovary morphology PCOS = polycystic ovary syndrome RIA = radioimmunoassay SHBG = sex hormone–binding globulin SPA = spironolactone T = testosterone
Thematic analysis is a poorly demarcated, rarely acknowledged, yet widely used qualitative analytic method within psychology. In this paper, we argue that it offers an accessible and theoretically flexible approach to analysing qualitative data. We outline what thematic analysis is, locating it in relation to other qualitative analytic methods that search for themes or patterns, and in relation to different epistemological and ontological positions. We then provide clear guidelines to those wanting to start thematic analysis, or conduct it in a more deliberate and rigorous way, and consider potential pitfalls in conducting thematic analysis. Finally, we outline the disadvantages and advantages of thematic analysis. We conclude by advocating thematic analysis as a useful and flexible method for qualitative research in and beyond psychology.
Despite the heavy burden and impact of the polycystic ovary syndrome (PCOS) in reproduction and public health, estimates regarding its prevalence at community levels are limited. We aimed to ascertain prevalence of PCOS in a community based sample using the National Institute of Health (NIH), the Rotterdam consensus (Rott.) and the Androgen Excess Society (AES) criteria.
Using the stratified, multistage probability cluster sampling method, 1126 women were randomly selected from among reproductive aged women of different geographic regions of Iran. PCOS were diagnosed using universal assessment of ultrasonographic parameters, hormonal profiles and clinical histories.
The mean +/- SD of age of study population was 34.4 +/- 7.6 years. Estimated prevalence of idiopathic hirsutism was 10.9% (95% CI: 8.9-12.9%); 8.3% of women had only oligo/anovulation and 8.0% had only polycystic ovaries. The prevalence of PCOS was 7.1% (95% CI: 5.4-8.8%) using the NIH definition, 11.7% (95% CI: 9.5-13.7%) by AES criteria and 14.6% (95% CI: 12.3-16.9%) using the Rott definition.
At community level, widespread screening of Rotterdam criteria will increase the estimated prevalence of PCOS over twofold. Establishing an explicit and contemporaneous method for definition and screening of each PCOS criteria has important investigational implications and increase the comparability of published research.
Polycystic ovary syndrome (PCOS) is considered to be the most common endocrine disorder in women of reproductive age, yet debate over appropriate diagnostic criteria and design limitations with sampling methodology have left some doubt as to the actual prevalence in the community. The objective of this study was to create a representative prevalence estimate of PCOS in the community under the National Institutes of Health (NIH) criteria and the more recent Rotterdam consensus criteria and Androgen Excess Society (AES) criteria.
A retrospective birth cohort study was carried out in which 728 women born during 1973-1975 in a single maternity hospital were traced and interviewed in adulthood (age = 27-34 year; n = 728). Symptoms of PCOS (hyperandrogenism, menstrual dysfunction and polycystic ovaries) were identified by examination and the presence of polycystic ovaries in those that did not consent to the ultrasound were imputed.
The estimated prevalence of PCOS in this birth cohort using the NIH criteria was 8.7 +/- 2.0% (with no need for imputation). Under the Rotterdam criteria, the prevalence was 11.9 +/- 2.4% which increased to 17.8 +/- 2.8% when imputed data were included. Under the AES recommendations, PCOS prevalence was 10.2 +/- 2.2%, and 12.0 +/- 2.4% with the imputed data. Of the women with PCOS, 68-69% did not have a pre-existing diagnosis.
The Rotterdam and AES prevalence estimates were up to twice that obtained with the NIH criteria in this, as well other prevalence studies. In addition, this study also draws attention to the issue of many women with PCOS in the community remaining undiagnosed.
Among patients with diabetes, major depression is associated with more diabetic complications, lower medication adherence, and poorer self-care of diabetes. We reported earlier that enhanced depression care reduces depression symptoms but not hemoglobin A1c level. This study examined effects of depression interventions on self-management among depressed diabetic patients.
A total of 329 patients in 9 primary care clinics were randomized to an evidence-based collaborative depression treatment (pharmacotherapy, problem-solving treatment, or both in combination) or usual primary care (routine medical services). Outcome measures included the Summary of Diabetes Self-Care Activities (SDSCA), reported at baseline and 3, 6, and 12 months, and medication non-adherence as assessed by automated pharmacy refill data of oral hypoglycemic agents, lipid-lowering agents, and angiotensin-converting enzyme inhibitors. We used mixed regression models adjusted for baseline differences to compare the intervention with usual care groups at follow-up assessments.
During the 12-month intervention period, enhanced depression care and outcomes were not associated with improved diabetes self-care behaviors (healthy nutrition, physical activity, or smoking cessation). Relative to the usual care group, the intervention group reported a small decrease in body mass index (mean difference = 0.70 kg/m2, 95% CI, 0.17 to 1.24 kg/m2) and a higher rate of nonadherence to oral hypoglycemic agents (mean difference = -6.3%, 95% CI, -11.91% to -0.71%). Adherence to lipid-lowering agents and to antihypertensive medicines was similar for the 2 groups.
In general, diabetes self-management did not improve among the enhanced depression treatment group during a 12-month period, except for small between-group differences of limited clinical importance. Research needs to assess whether self-care interventions tailored for specific conditions, in addition to enhanced depression care, can achieve better diabetes and depression outcomes.
Polycystic ovary syndrome (PCOS) is a common reproductive disorder associated with many characteristic features, including hyperandrogenaemia, insulin resistance and obesity which may have significant implications for pregnancy outcomes and long-term health of the woman. This meta-analysis was conducted to evaluate the risk of pregnancy and neonatal complications in women with PCOS. Electronic databases were searched for the following MeSH headings: PCOS, hyperandrogenism, pregnancy outcome, pregnancy complications, diabetes mellitus, type II. A handsearch of human reproduction and fertility and sterility was also conducted. Studies in which pregnancy outcomes in women with PCOS were compared with controls were considered for inclusion in this meta-analysis. Fifteen of 525 identified studies were included, involving 720 women presenting with PCOS and 4505 controls. Women with PCOS demonstrated a significantly higher risk of developing gestational diabetes [odds ratio (OR) 2.94; 95% confidence interval (CI): 1.70-5.08], pregnancy-induced hypertension (OR 3.67; 95% CI: 1.98-6.81), pre-eclampsia (OR 3.47; 95% CI: 1.95-6.17) and preterm birth (OR 1.75; 95% CI: 1.16-2.62). Their babies had a significantly higher risk of admission to a neonatal intensive care unit (OR 2.31; 95% CI: 1.25-4.26) and a higher perinatal mortality (OR 3.07; 95% CI: 1.03-9.21), unrelated to multiple births. In conclusion, women with PCOS are at increased risk of pregnancy and neonatal complications. Pre-pregnancy, antenatal and intrapartum care should be aimed at reducing these risks.
Cardiovascular events and emotional disorders share a common epidemiology, thus suggesting fundamental pathways linking these different diseases. Growing evidence in the literature highlights the influence of psychological determinants in somatic diseases. A patient's socio-economic aspects, personality traits, health behavior and even biological pathways may contribute to the course of cardiovascular disease. Cardiac events often occur suddenly and the episode can be traumatic for people not prepared for such an event. In this review of the literature, the authors tackle the question of psychobiological mechanisms of stress, in a pathophysiological approach to fundamental pathways linking the brain to the heart. Various psychological, biological and genetic arguments are presented in support of the hypothesis that various etiological mechanisms may be involved. The authors finally deal with biological and psychological strategies in a context of cardiovascular disease. Indeed, in this context, cardiac rehabilitation, with its global approach, seems to be a good time to diagnose emotional disorders like anxiety and depression, and to help people to cope with stressful events. In this field, cardiac rehabilitation seems to be a crucial step in order to improve patients’ outcomes, by helping them to understand the influence of psychobiological risk factors, and to build strategies in order to manage daily stress.
The general view of descriptive research as a lower level form of inquiry has influenced some researchers conducting qualitative research to claim methods they are really not using and not to claim the method they are using: namely, qualitative description. Qualitative descriptive studies have as their goal a comprehensive summary of events in the everyday terms of those events. Researchers conducting qualitative descriptive studies stay close to their data and to the surface of words and events. Qualitative descriptive designs typically are an eclectic but reasonable combination of sampling, and data collection, analysis, and re-presentation techniques. Qualitative descriptive study is the method of choice when straight descriptions of phenomena are desired.
Executive Summary
Polycystic ovary syndrome (PCOS) is recognized as the most common endocrine disorder of reproductive-aged women around the world. This document, produced by the collaboration of the American Association of Clinical Endocrinologists and the Androgen Excess Society aims to highlight the most important clinical issues confronting physicians and their patients with PCOS. It is a summary of current best practices in 2014.
Insulin resistance is believed to play an intrinsic role in the pathogenesis of PCOS. The mechanism by which insulin resistance or insulin give rise to oligomenorrhea and hyperandrogenemia, however, is unclear.
Hyperinsulinemic-euglycemic clamp studies have shown that both obese and lean women with PCOS have some degree of insulin resistance. Insulin resistance is implicated in the ovulatory dysfunction of PCOS by disrupting the hypothalamic- pituitary-ovarian axis.
Given the association with insulin resistance, all women with PCOS require evaluation for the risk of metabolic syndrome (MetS) and its components, including type 2 diabetes, hypertension, hyperlipidemia, and the possible risk of clinical events, including acute myocardial infarction and stroke.
Obese women with PCOS are at increased risk for MetS with impaired glucose tolerance (IGT; 31 to 35%) and type 2 diabetes mellitus (T2DM; 7.5 to 10%). Rates of progression from normal glucose tolerance to IGT, and in turn to T2DM, may be as high as 5 to 15% within 3 years.
Data suggest the need for baseline oral glucose tolerance test every 1 to 2 years based on family history of T2DM as well as body mass index (BMI) and yearly in women with IGT.
Compared with BMI- and age-matched controls, young, lean PCOS women have lower high-density lipoprotein (HDL) size, higher verylow- density lipoprotein particle number, higher low-density lipoprotein (LDL) particle number, and borderline lower LDL size.
Statins have been shown to lower testosterone levels either alone or in combination with oral contraceptives (OCPs) but have not shown improvement in menses, spontaneous ovulation, hirsutism, or acne. Statins reduce total and LDL cholesterol but have no effect on HDL, C-reactive protein, fasting insulin, or homeostasis model assessment of insulin resistance in PCOS women, in contrast to the general population.
There have been no long-term studies of statins on clinical cardiac outcomes in women with PCOS.
Coronary calcification is more prevalent and more severe in PCOS than in controls.
In women under 60 years of age undergoing coronary angiography, the presence of polycystic ovaries on sonography has been associated with more arterial segments with >50% stenosis, but the relationship between PCOS and actual cardiovascular events remains unclear.
Therapies for PCOS are varied in their effects and targets and include both nonpharmacologic as well as pharmacologic approaches.
Weight loss is the primary therapy in PCOS—reduction in weight of as little as 5% can restore regular menses and improve response to ovulation- inducing and fertility medications.
Metformin in premenopausal PCOS women has been associated with a reduction in features of MetS.
Clamp studies using ethinyl estradiol/drosperinone combination failed to reveal evidence of an increase in either peripheral or hepatic insulin resistance.
Subjects with PCOS have a 1.5-times higher baseline risk of venous thromboembolic disease and a 3.7-fold greater effect with OCP use compared with non-PCOS subjects.
There is currently no genetic test to screen for or diagnose PCOS, and there is no test to assist in the choice of treatment strategies.
Persistent bleeding should always be investigated for pregnancy and/or uterine pathology—including transvaginal ultrasound exam and endometrial biopsy—in women with PCOS.
PCOS women can have difficulty conceiving. Those who become pregnant are at risk for gestational diabetes (which should be evaluated and managed appropriately) and the microvascular complications of diabetes.
Assessment of a woman with PCOS for infertility involves evaluating for preconceptional issues that may affect response to therapy or lead to adverse pregnancy outcomes and evaluating the couple for other common infertility issues that may affect the choice of therapy, such as a semen analysis.
Women with PCOS have multiple factors that may lead to an elevated risk of pregnancy, including a high prevalence of IGT—a clear risk factor for gestational diabetes—and MetS with hypertension, which increases the risk for pre-eclampsia and placental abruption.
Women should be screened and treated for hypertension and diabetes prior to attempting conception.
Women should be counseled about weight loss prior to attempting conception, although there are limited clinical trial data demonstrating a benefit to this recommendation.
Treatment for women with PCOS and anovulatory infertility should begin with an oral agent such as clomiphene citrate or letrozole, an aromatase inhibitor.
Abbreviations:
AMH = anti-Müllerian hormone
BMI = body mass index
BP = blood pressure
CIMT = carotid intima media thickness
CV = cardiovascular
GnRH = gonadotropin-releasing hormone
GWAS = genomewide association study
HDL = high-density lipoprotein
HOMA-IR = homeostasis model assessment of insulin resistance
IGT = impaired glucose tolerance
LDL = low-density lipoprotein
LH = luteinizing hormone
MetS = metabolic syndrome
MI = myocardial infarction
NIH = National Institutes of Health
OCP = oral contraceptive
OGTT = oral glucose tolerance test
PCOM = polycystic ovary morphology
PCOS = polycystic ovary syndrome
RR = relative risk
SSPG = steady-state plasma glucose
T = testosterone
T2DM = type 2 diabetes mellitus
TG = triglyceride
VTE = venous thromboembolic
WHR = waist to hip ratio
Weight reduction and exercise have been shown to help with menstrual disturbance and infertility in obese women with polycystic ovary syndrome. We studied the relationship between insulin sensitivity and ovulation patterns in 18 infertile anovulatory obese polycystic ovary syndrome (PCOS) women (NO) with normal glucose tolerance, aged between 22–39 yr with a body mass index of 27–45 kg/m2, before and after a 6-month diet and exercise program. This program promotes healthy lifestyle factors, but does not lead to rapid weight loss. The anthropometric, metabolic, and endocrine factors of these subjects were compared to those of 10 age- and weight-matched PCOS women with regular monthly ovulation (RO).
Before lifestyle modification, the anovulatory subjects had greater central obesity than regular ovulators, as assessed by percent central fat (NO, 45.7 ± 0.8%; RO, 42.2 ± 1.6%; P < 0.05), higher glucose increment after glucose challenge (NO, 10.1 ± 1.0 mmol/L; RO, 6.4 ± 1.1 mmol/L; P < 0.02), lower insulin sensitivity index (NO, 1.2 ± 0.2; RO, 2.8 ± 0.6 μmol/kg·min/pmol/L; P < 0.005), higher plasma LH (NO, 8.9 ± 0.9; RO, 4.6 ± 0.9 IU/L; P < 0.005), and lower plasma sex hormone-binding globulin (NO, 18.0 ± 2.5; RO, 27.8 ± 5.7 nmol/L; P < 0.05].
Anovulatory subjects were classified as responders (R) to the intervention if they regained ovulation during the study. As a result of intervention, R showed an 11% reduction in central fat, a 71% improvement in insulin sensitivity index, a 33% fall in fasting insulin levels, and a 39% reduction in LH levels. None of these parameters changed significantly in nonresponders (NR). At the end of the study, R had lower fasting insulin (R, 13.6 ± 1.7; NR, 23.0 ± 3.5 mU/L) and LH levels (R,5.0 ± 1.7; NR, 7.4± 1.4 IU/L), but similar androgen levels compared to NR.
We conclude that lifestyle modification without rapid weight loss leads to a reduction of central fat and improved insulin sensitivity, which restores ovulation in overweight infertile women with PCOS. Lifestyle modification is the best initial management for obese women seeking to improve their reproductive function.
To add to the small, but growing, number of literature reviews of family interventions in health care, a systematic literature search of Family Systems Nursing intervention research resulted in the inclusion of 17 empirical research reports. Family Systems Nursing intervention research to date has primarily used qualitative methods and a few quasi-experimental designs using pre-post outcome measures. Families' responses to Family Systems Nursing interventions were categorized in this integrative review using the cognitive, affective, and behavioral domains of family functioning proposed by Wright and Leahey. Family response in the cognitive domain found improved understanding, capability, and enhanced coping. The affective response categories showed caring more about each other and the family, improved family emotional well-being, and improved individual emotional well-being. Finally, family responses in the behavioral domain comprised caring more for each other and the family, improvement in interactions within and outside family, and healthier individual behavior. These findings may guide the design of future family nursing intervention research and the selection of family outcome measures to examine the usefulness of Family Systems Nursing interventions. More intervention research using experimental and quasi-experimental designs is needed to strengthen the evidence for Family Systems Nursing practice.
Polycystic Ovarian Syndrome (PCOS) has been associated with numerous reproductive and metabolic abnormalities. Despite tremendous advances in the management of reproductive dysfunction, insight into the metabolic implications of PCOS is limited by the lack of uniform diagnostic criteria, the heterogeneity of the condition and the presence of confounders including obesity. Obesity clearly has a role in long term health and may best predict both reproductive and metabolic dysfunction as well as negatively affect the response to treatment in women with PCOS. Diabetes, cardiovascular disease and cancer are also at the forefront of any risk assessment or comprehensive treatment strategy for these women. Lifestyle modifications including dietary changes, increased exercise and weight loss are appropriate first line interventions for many women with PCOS. Pharmaceuticals including metformin, lipid lowering agents and oral contraceptives should be tailored to the individual's risk profile and treatment goals.
Dieting and unhealthy weight control behaviors are common among adolescents and questions exist regarding their long-term effect on weight status.
To examine 10-year longitudinal associations between dieting and unhealthy weight control behaviors and changes in body mass index (BMI) from adolescence to young adulthood.
A diverse population-based sample of middle school and high school adolescents participating in Project EAT (Eating and Activity in Teens and Young Adults) was followed up for 10 years. Participants (N = 1,902) completed surveys in 1998-1999 (Project EAT-I), 2003-2004 (Project EAT-II), and 2008-2009 (Project EAT-III). Dieting and unhealthy weight control behaviors at Time 1 and Time 2 were used to predict 10-year changes in BMI at Time 3, adjusting for sociodemographic characteristics and Time 1 BMI.
Dieting and unhealthy weight control behaviors at both Time 1 and Time 2 predicted greater BMI increases at Time 3 in males and females, as compared with no use of these behaviors. For example, females using unhealthy weight control behaviors at both Time 1 and Time 2 increased their BMI by 4.63 units as compared with 2.29 units in females not using these behaviors (p < .001). Associations were found in both overweight and nonoverweight respondents. Specific weight control behaviors at Time 1 that predicted larger BMI increases at Time 3 included skipping meals and reporting eating very little (females and males), use of food substitutes (males), and use of diet pills (females).
Findings clearly indicate that dieting and unhealthy weight control behaviors, as reported by adolescents, predict significant weight gain over time.
To perform a systematic review and meta-analysis of studies that compared the prevalence of anxiety symptoms in women with polycystic ovary syndrome (PCOS) and control women.
Meta-analysis and systematic review.
University practice.
Cross-sectional studies comparing PCOS subjects and geographically matched clearly defined non-PCOS control subjects with data on age and body mass index (BMI).
Anxiety screening tool.
The primary analysis contrasted prevalence of anxiety. Cochrane Review Manager 5.0.24 software was used to construct forest plots comparing frequency of anxiety symptoms in case and control subjects.
Of 613 screened articles, nine met our selection criteria for a systematic review and four were included in the meta-analysis. The prevalence of generalized anxiety symptoms was available in four studies and was significantly greater in PCOS subjects (42/206, 20.4%) compared to controls (8/204, 3.9%). The odds for anxiety symptoms were significantly greater in women with PCOS compared with control subjects (odds ratio 6.88, 95% confidence interval 2.5-18.9). The mean anxiety score was significantly increased in three of the remaining five studies. Other anxiety disorders, such as social phobia, panic attacks, and obsessive compulsive disorders, were assessed infrequently.
Our systematic review suggests an increased odds of anxiety symptoms in women with PCOS, underscoring the importance of screening all women with PCOS for anxiety symptoms. Follow-up evaluation and treatment are essential, because generalized anxiety disorder is a chronic condition. Potential contributors for anxiety symptoms, such as hirsutism, obesity, and/or infertility may be specific to women with PCOS but need further investigation.
One publication reported that lower body satisfaction and lower education were independent predictors of depression in polycystic ovary syndrome (PCOS) in women. This study replicates that analysis using different instruments, and adds androgen levels to the model.
Cross-sectional analysis of questionnaires (Quick Inventory of Depressive Symptomatology-Self-Report, Body Esteem Scale) and serum androgens from a community cohort with (n=94) and without (n=96) PCOS, matched by BMI category. Non-parametric tests, Spearman correlations, and negative binomial regression models were analyzed.
Depression symptoms were common (40-60% in lean, overweight and obese BMI categories) in the PCOS cohort, albeit generally of mild severity. The PCOS women had similar depression symptom severity (P>.20) and similar body dissatisfaction (P≥.25) as the regularly cycling women in total and stratified by BMI category. In both the PCOS and non-PCOS cohorts, depression symptom severity was positively correlated with dissatisfaction with physical appearance and physical conditioning (P<.02). Body dissatisfaction (especially perception of physical conditioning) was strongly associated with more severe depression symptoms in non-obese PCOS women (BMI<30, P<.04) before and after controlling for age, testosterone and free testosterone. In contrast, for obese women with PCOS, depression was unrelated to body dissatisfaction after controlling for age.
Among non-obese PCOS women, their subjective body image was strongly associated with the severity of their depression symptoms. Most of the obese PCOS cohort had low body satisfaction and depression symptoms, therefore individual differences in the body dissatisfaction scores were not helpful in identifying depression symptom severity. Neither testosterone nor free testosterone was associated with depression symptom severity in PCOS women after controlling for body dissatisfaction and age.
Polycystic ovary syndrome (PCOS) is associated with several metabolic complications. A few small studies have also suggested an increased risk of depression in women with PCOS. The goals of this study were to estimate the prevalence of depressive disorders in women with PCOS compared with controls and to evaluate the correlation between depression, hyperandrogenism, and other metabolic markers.
Cohort study.
University Hospital.
Women with PCOS (Rotterdam criteria; n = 103). Women without PCOS seen during the same time period for an annual exam were used as control subjects (n = 103).
Primary Care Evaluation of Mental Disorders Patient Health Questionnaire (PRIME-MD PHQ) and the Beck Depression Inventory.
Depressive disorders.
Women with PCOS were at an increased risk for depressive disorders (new cases) compared with controls (21% vs. 3%; odds ratio 5.11 [95% confidence interval (CI) 1.26-20.69]; P<.03). The overall risk of depressive disorders in women with PCOS was 4.23 (95% CI 1.49-11.98; P<.01) independent of obesity and infertility. Compared with the nondepressed PCOS subjects, the depressed PCOS subjects had a higher body mass index (BMI) and evidence of insulin resistance (P<.02).
We report a significantly increased risk of depressive disorders (as defined by the Diagnostic and Statistical Manual IV) in women with PCOS and recommend routine screening in this population.
Disordered eating behaviors are prevalent in adolescence and can have harmful consequences. An important question is whether use of these behaviors in adolescence sets the pattern for continued use into young adulthood.
To examine the prevalence and tracking of dieting, unhealthy and extreme weight control behaviors, and binge eating from adolescence to young adulthood.
Population-based, 10-year longitudinal study (Project EAT-III: Eating Among Teens and Young Adults, 1999-2010).
The study population included 2,287 young adults (55% girls, 52% nonwhite). The sample included a younger group (mean age 12.8±0.7 years at baseline and 23.2±1.0 years at follow-up) and an older group (mean age 15.9±0.8 at baseline and 26.2±0.9 years at follow-up).
Longitudinal trends in prevalence of behaviors were tested using generalized estimating equations. Tracking of behaviors were estimated using the relative risk of behaviors at follow-up given presence at baseline.
In general, the prevalence of dieting and disordered eating was high and remained constant, or increased, from adolescence to young adulthood. Furthermore, behaviors tended to track within individuals and, in general, participants who engaged in dieting and disordered eating behaviors during adolescence were at increased risk for these behaviors 10 years later. Tracking was particularly consistent for the older girls and boys transitioning from middle adolescence to middle young adulthood.
Study findings indicate that disordered eating behaviors are not just an adolescent problem, but continue to be prevalent among young adults. The tracking of dieting and disordered eating within individuals suggests that early use is likely to set the stage for ongoing use. Findings suggest a need for both early prevention efforts before the onset of harmful behavioral patterns as well as ongoing prevention and treatment interventions to address the high prevalence of disordered eating throughout adolescence and young adulthood.
Patients with polycystic ovary syndrome (PCOS) are at risk of arterial disease. We examined the risk of (non)fatal coronary heart disease (CHD) or stroke in patients with PCOS and ovulatory women without PCOS, and assessed whether obesity might explain a higher risk of CHD or stroke.
We performed a systematic review and meta-analysis of controlled observational studies. Four definitions of PCOS were considered: World Health Organization type II anovulation, National Institutes of Health criteria, Rotterdam consensus and Androgen-excess criteria. Obesity was defined as BMI > 30 kg/m(2) and/or waist circumference >88 cm. Study quality was assessed using the Newcastle-Ottawa Scale. Primary outcome was fatal/non-fatal CHD or stroke. Definitions of CHD and stroke were based on criteria used by the various authors. The effect measure was the pooled relative risk in a random effects model. Risk ratios and rate ratios were combined here.
After identifying 1340 articles, 5 follow-up studies published between 2000 and 2008 were included. The studies showed heterogeneity in design, definitions and quality. In a random effects model the relative risk for CHD or stroke were 2.02 comparing women with PCOS to women without PCOS (95% confidence interval 1.47, 2.76). Pooling the two studies with risk estimates adjusted for BMI showed a relative risk of 1.55 (1.27, 1.89).
This meta-analysis showed a 2-fold risk of arterial disease for patients with PCOS relative to women without PCOS. BMI adjustment did not affect this finding, suggesting the increased risk for cardiovascular events in PCOS is not completely related to a higher BMI in patients with PCOS.
To estimate whether women aged 20-32 years who fulfilled National Institutes of Health criteria for polycystic ovary syndrome (PCOS) would be at higher risk for subsequent development of incident diabetes, dyslipidemia, and hypertension, and to estimate whether normal-weight women with PCOS would have the same degree of cardiovascular risk as overweight women with PCOS.
We estimated the association of PCOS with incident diabetes, dyslipidemia, and hypertension over a period of 18 years among 1,127 white and African-American women in the Coronary Artery Risk Development in Young Adults cohort. We classified women at baseline (ages 20-32 years) based on self-reported symptoms and serum androgen measures using National Institutes of Health PCOS criteria. We estimated the association of PCOS and subsequent cardiovascular risk factors, independent of baseline body mass index (BMI), using multivariable logistic regression. Additionally, among 746 women with a second assessment of PCOS at ages 34-46 years, we estimated the association of persistent PCOS with cardiovascular risk factors.
Of 1,127 women, 53 (4.7%) met criteria for PCOS at ages 20-32 years. Polycystic ovary syndrome was associated with a twofold higher odds of incident diabetes (23.1% compared with 13.1%, adjusted odds ratio [AOR] 2.4, confidence interval [CI] 1.2-4.9) and dyslipidemia (41.9% compared with 27.7%, AOR 1.9, CI 1.0-3.6) over the course of 18 years; the association with incident hypertension was not significant (26.9% compared with 26.3%, AOR 1.7, CI 0.8-3.3). Normal-weight women with PCOS (n=31) had a threefold higher odds of incident diabetes compared with normal-weight women without PCOS (AOR 3.1, CI 1.2-8.0). Compared with those without PCOS, women with persistent PCOS (n=11) had the highest odds of diabetes (AOR 7.2, CI 1.1-46.5).
Polycystic ovary syndrome is associated with subsequent incident diabetes and dyslipidemia, independent of BMI. Diabetes risk may be greatest for women with persistent PCOS symptoms.
II.
"Whatever Happened to Qualitative Description?" (Sandelowski, 2000) was written to critique the prevailing tendency in qualitative health research to claim the use of methods that were not actually used and to clarify a methodological approach rarely identified as a distinctive method. The article has generated several misconceptions, most notably that qualitative description requires no interpretation of data. At the root of these misconceptions is the persistent challenge of defining qualitative research methods. Qualitative description is a "distributed residual category" (Bowker & Star, 2000). Cambridge, MA: The MIT Press) in the classification of these methods. Its value lies not only in the knowledge its use can produce, but also as a vehicle for presenting and treating research methods as living entities that resist simple classification.
To assess the impact of adding exercise to dietary restriction on depressive symptoms and health-related quality of life (HRQOL) in women with polycystic ovary syndrome (PCOS).
Analysis of depression and quality of life outcomes from a randomized, controlled prospective clinical intervention that evaluated the effects on a range of health outcomes in women with PCOS.
Clinical research unit.
One hundred four overweight/obese PCOS women (aged 29.3 ± 0.7 years; body mass index [BMI] 36.1 ± 0.5 kg/m(2)).
Randomized to one of three 20-week lifestyle programs: diet only, diet and aerobic exercise, or diet and combined aerobic-resistance exercise.
Depression and PCOS-specific HRQOL.
Forty-nine women completed the intervention (diet only = 14, diet and aerobic exercise = 15, diet and combined aerobic-resistance exercise = 20). By week 20 all groups achieved weight loss and had improvements in depression and PCOS-specific HRQOL scores, except for body hair domain score. There was no difference between treatments for all outcomes.
This study demonstrated that dietary restriction alone and combined with exercise had similar benefits for improving depression and HRQOL scores in overweight and obese women with PCOS.
The objective of this study was to perform a systematic review of the literature to determine whether there is an association between polycystic ovary syndrome (PCOS) and gynaecological malignancy. Medline and Embase databases (1968-2008) were searched to identify publications on the association between PCOS and gynaecological cancers including breast cancer. Studies were selected that examined the association between PCOS and all types of gynaecological malignancies. A total of 19 studies exploring the association between PCOS and breast, endometrial and ovarian cancer were identified. Of these, only eight could be included after review. The data showed variability in the definition of PCOS. A meta-analysis of the data suggests that women with PCOS are more likely to develop cancer of the endometrium (OR 2.70, 95% CI 1.00-7.29) and ovarian cancer (OR 2.52, 95% CI 1.08-5.89) but not breast cancer (OR 0.88, 95% CI 0.44-1.77). Women with PCOS appear to be three times more likely to develop endometrial cancer but are not at increased risk of breast cancer. There is insufficient evidence to implicate PCOS in the development of vaginal, vulval, cervical or ovarian cancers. The paucity of studies investigating the association between PCOS and gynaecological cancers is likely to affect the reliability of the conclusions.
Current evidence indicates that individuals and families who engage in self-management (SM) behaviors improve their health outcomes. While the results of these studies are promising, there is little agreement as to the critical components of SM or directions for future study. This article offers an organized perspective of similar and divergent ideas related to SM. Unique contributions of prior work are highlighted and findings from studies are summarized. A new descriptive mid-range theory, Individual and Family Self-management Theory, is presented; assumptions are identified, concepts defined, and proposed relationships are outlined. This theory adds to the literature on SM by focusing on individuals, dyads within the family, or the family unit as a whole; explicating process components of SM; and proposing use of proximal and distal outcomes.
To examine health-related quality of life (HRQL) in adolescents with polycystic ovary syndrome (PCOS), compared with healthy adolescents, and to determine whether clinically observed or self-perceived severity of illness affects their HRQL.
Cross-sectional study of female adolescents conducted at an urban, hospital-based adolescent medicine clinical practice.
Ninety-seven adolescent patients with PCOS and 186 healthy patients who were seen for care between October 15, 1999, and March 2, 2001.
Health-related quality-of-life scores as determined by the Child Health Questionnaire-Child Self-Report Form.
Adolescents with PCOS scored lower on subscales measuring general health perceptions, physical functioning, general behavior, and limitations in family activities because of illness. Patients scored higher on the change in health in the last year subscale, and most had been diagnosed and initiated treatment for PCOS in the last year. Patients who had higher self-perceived severity of illness also scored lower on the general health perceptions subscale, but clinical severity was not associated with differences in HRQL.
Adolescents with PCOS experience lower HRQL compared with healthy adolescents. Polycystic ovary syndrome and perceived severity of illness negatively affect HRQL in adolescents. This study suggests a need to develop interventions to reduce the distress that patients with PCOS may face as adolescents and young adults.
To obtain data from a pilot randomized trial on the effect of metformin therapy and lifestyle modification on ovulation and androgen concentrations in women with polycystic ovary syndrome (PCOS).
Prospective, randomized, placebo-controlled pilot trial.
Academic medical center.
Thirty-eight overweight or obese women with PCOS.
All subjects were randomized to one of four 48-week interventions: metformin 850 mg two times per day, lifestyle modification plus metformin 850 mg two times per day, lifestyle modification plus placebo, or placebo alone.
Recruitment, dropout, and compliance with a long-term lifestyle intervention in PCOS; preliminary estimates of treatment effect on ovulation, as measured by weekly urinary pregnanediol glucuronide, and on total T and free androgen index.
It was necessary to screen seven women to have one subject randomized. The dropout rate was 39%, with the majority of dropouts occurring within the first 24 weeks. Mean body mass index was >39 mg/kg(2). Modest weight reduction was found in all treatment groups, with the most significant reduction occurring with the combination of metformin and lifestyle intervention. Significant androgen reduction occurred in the combination group only. Ovulation rates did not differ significantly between groups. However, when data were analyzed by presence or absence of weight reduction in subjects, independent of treatment group, the estimated odds ratio for weight loss was 9.0 (95% confidence interval 1.2-64.7) with respect to regular ovulation. If weight loss occurred during metformin therapy, the odds ratio for regular ovulation was 16.2 (95% confidence interval 4.4-60.2).
Key methodologic issues for a large-scale, randomized trial of lifestyle intervention in PCOS include minimizing early dropout from the lifestyle intervention and including a range of body mass index that is not skewed toward severe obesity. Weight reduction might play the most significant role in restoration of ovulation in obese women with PCOS.