Polycystic Ovary Syndrome is a complex condition which affects the health and wellbeing of many females, including adolescent young girls. This condition, whereby there are hormone imbalances which interfere with the menstrual cycle and may lead to such problems as ovarian cysts and irregular periods (PubMed Health, 2010). Over time, this diagnosis may lead to infertility problems for many women (PubMed Health, 2010). The direct causes of this condition are largely unknown, but a number of treatment options are available to ease the symptoms, including birth control pills and weight loss to regulate hormones (PubMed Health, 2010). The concerns associated with Polycystic Ovary Syndrome should be addressed as soon as possible, particularly in adolescents, to ensure that they receive the proper care and treatment to minimize long-term consequences associated with the condition.
Polycystic Ovary Syndrome (PCOS) is often presented in adolescent females at high rates: “the prevalence within an unselected population of adolescents may be as high as 31%. The syndrome is associated with metabolic derangements including obesity, hyperinsulinemia, impaired glucose tolerance, vascular reactivity, and inflammation, posing a substantial health and economic burden to society” (Hart et.al, 2011, p. 1). The quality of life experienced by this population of females requires further consideration and evaluation to determine the overall extent of influence of PCOS on this measurement. To be specific, “Trent et al. (6) have previously shown that adolescents with PCOS experience a lower quality of life compared with healthy adolescents. They also showed, in PCOS adolescents, that body mass index (BMI) is a primary mediator of health-related quality-of-life (7). In a Bulgarian study of 100 adult women with PCOS it was demonstrated that the greatest negative influences on quality of life were linked to hirsutism (especially <25 years old), being overweight, and infertility concerns (>25 years)” (Harris-Glocker et.al, 2010, p. 1016). Therefore, it is important to address how quality of life might be measured and what results might be discovered to expand knowledge regarding quality of life for this specific population group.
The primary purpose of this discussion is to consider how polycystic ovary syndrome impacts the quality of life in a group of adolescent females, using a number of different measures through a questionnaire instrument. In a prior study, it was determined that as the BMI of adolescent females is reduced, there is a tendency for their quality of life scores to increase: “The trend toward correlation between improved PCOSQ score and change in BMI suggests an association between improvements in weight and quality of life specifically with regard to weight in this study population. This is consistent with findings of other investigators who found that women with PCOS seem to be most distressed about their body weight” (Harris-Glocker et.al, 2010). Under these conditions, it is expected that other studies might provide additional insight in regards to the correlation between PCOS, obesity, and quality of life, using lifestyle measurements as a primary objective. The purpose of the current study is to explore these dimensions in greater detail to determine the extent to which these lifestyle measures provide a positive influence for adolescent females in coping with PCOS.
Definition of Terms
Hyperandrogenism: An excess amount of androgens above normal levels.
Insulin Resistance: A common condition that may lead to diabetes-related complications in many humans.
Amenorhhoea: Lack of menstrual periods.
Oligomenorhhoea: Infrequent menstrual periods.
Metformin: A treatment for PCOS which may prevent symptoms and weight gain.
According to Barnard et.al (2007), “PCOS is associated with reduced quality of life (QoL)…Many of the symptoms are painful, uncomfortable, unpredictable and are associated with characteristics culturally defined as unfeminine and undesirable (for instance, hirsutism, obesity, acne and infertility). In addition, the disorder is associated with biochemical disturbances which in themselves can lead to mood disturbances” (p. 2279).
PCOS “has significant and diverse clinical implications including reproductive (infertility, hyperandrogenism, hirsutism), metabolic (insulin resistance, impaired glucose tolerance, type 2 diabetes mellitus, adverse cardiovascular risk profiles) and psychological features (increased anxiety, depression and worsened quality of life)” (Teede et.al, 2010).
Delimitation (Inclusive & Exclusion Criteria)
In exploring this concept further, it is important to recognize the various delimitations that enable the researchers to identify essential quality of life measures in specifically addressing PCOS. Several key delimitations must be addressed, including the following:
1) Only adolescents will be included in this study; therefore, any females aged 18 or over will be excluded from study participation;
2) Only females under age 18 who have been formally diagnosed with PCOS by their physicians will be included in the study;
3) Female participants will not be excluded on the basis of race, as study diversity is encouraged to obtain well-rounded results; and
4) To limit the study from becoming too large, study participants will be selected from a single metropolitan area.
Based upon specific research considerations, the study will assume that study participants will be using their real-life experiences with PCOS to answer the study questions. It is also assumed that adolescent PCOS patients experience a variety of emotional responses to this condition, which will play a role in their perceptions. The researchers also assume that each study participant is under the care of a physician for their condition, even if only on an annual basis. In addition, each participant was required to submit a general health questionnaire to provide background information regarding their overall health and wellbeing at the time of participation.
The proposed hypothesis for the study recognizes that PCOS may have detrimental effects on the lives of female adolescents, who become increasingly concerned with matters such as their general health and wellbeing, menstruation, symptoms associated with PCOS, and stress, amongst others. Therefore, the proposed study instrument will provide a basis for exploring the different elements of quality of life. It is anticipated that the results will provide further evidence that PCOS in adolescent females leads to a general decline in quality of life in various areas, and that the emotional states of many of these participants are fragile because of this condition.
Significance of the Study
This study is significant because it provides further data and evidence that PCOS is detrimental to the wellbeing of adolescent females for a variety of reasons. This condition impacts their emotional state, their observations regarding general health, and increases their level of stress and worry on a consistent level. This, in turn, also leads to other possible negative outcomes, which may ultimately interfere with an adolescent female’s social life and academic activities. Therefore, it is important to recognize the true nature of these issues and how they ultimately impact outcomes for this group of females. Since PCOS has become increasingly relevant to adolescent females, it is necessary to address its impact and how it influences their health and wellbeing in different ways to improve approaches and treatment alternatives for this group, in addition to coping skills.
The quality of life for adolescent females suffering from PCOS is often significantly reduced as a result of the condition and its variable symptoms. Prior research conducted by Gupta et.al (2009) demonstrates that “Polycystic ovary syndrome is the most common cause of menstrual dysfunction in teenage girls. Although only a few studies focusing on the prevalence of PCOS among adolescents have been conducted, one reported the adolescent incidence to be 3% [5, 6]. More than 50% of adolescents exhibiting the features of this disorder (hirsutism, acne, hyperandrogenemia, etc.) are obese and at high risk for developing type II diabetes” (p. S 116). As a result, it is important to consider that many adolescent girls who have formally been diagnosed with PCOS may experience emotional and/or psychological symptoms in addition to the more traditional physical symptoms of the condition. These may include depression, frustration, anger, doubt, and worry, amongst others. These factors are critical because they play a role in how adolescents perceive PCOS and its impact on their wellbeing. It is known that “Adolescent patients possibly experience negative effects later in life associated with the stress of living with the physical manifestations of the disease at such an early age. However, one study discovered that adolescent patients who received detailed information about the disease had a greater psychological quality of life than other, less informed patients” (Gupta et.al, 2009, p. S 123). Therefore, it is important for clinicians to recognize that the quality of life of these patients may be improved with such relatively simple steps as providing much-needed medical information to patients in a format that is easy for them to understand, as this may improve their ability to cope with CPOS over time from adolescence to adulthood (Gupta et.al, 2009). Nonetheless, an evaluation of quality of life from an adolescent’s perspective is an important opportunity to explore the different dimensions of PCOS and how it directly impacts a female from this age group in different ways, both positive and negative; however, exploring the negative influences is essential to improving treatments and interventions that will benefit this age group more effectively (Gupta et.al, 2009).
Within the adolescent age group, it is important to “identify PCOS in adolescent girls to initiate these changes immediately and to prevent the onset and progression of other diseases such as type II diabetes, cardiovascular disease, and cancer. These diseases can be avoided by making healthy lifestyle choices such as exercising regularly and maintaining a nutritious, low-fat diet. In addition, it is recommended that women with PCOS be screened for the most common long-term consequences in order to determine their risk for developing these complications and/or detect them early” (Gupta et.al, 2009, p. S 123). This strategy will enable those working with this population, from clinicians to parents, to recognize methods of improving quality of life through relatively simple changes and modifications to their existing routines (Gupta et.al, 2009). This process will also demonstrate that it is necessary for adolescent females to be provided with a variety of resources which will enable them to make important strides in managing their PCOS, even if it may be uncomfortable or difficult at times (Gupta et.al, 2009).
It is important to recognize the various treatment options that might be available in supporting the different dimensions of PCOS. To be specific, “In adolescent girls symptoms of PCOS occur at a particularly vulnerable stage of their psychological development and can have a negative impact on their self-esteem which needs to be taken into account when considering therapy. In young women who are also interested in conceiving, the goal of therapy would include induction of ovulation. Treatment can be divided into non-medical and medical interventions” (Tharian and Warner, 2011, p. 312). These findings suggest that it is necessary to evaluate adolescent females in the context of their condition and the common symptoms that they experience as a result of this condition (Tharian and Warner, 2011). Furthermore, these individuals represent a subset of the population who suffer from PCOS in varying degrees, and who require further evaluation, based upon their specific symptoms (Tharian and Warner, 2011). Treatment alternatives should consider strategies that have been successful in the past versus those which have failed in order to determine how to move forward with a treatment regimen for a specific patient (Tharian and Warner, 2011). In addition, “Lifestyle modification is usually considered the first-line of treatment for obese adolescent girls with PCOS. A 5-10% weight loss reduces androgen levels, lowers fasting hyperinsulinaemia and improves ovulatory function in many patients with PCOS. Cosmetic measures often help to improve the self-image of girls with hirsuitism. Shaving, chemical depilitating agents, bleaching, and waxing are effective and relatively inexpensive but can cause skin irritation” (Tharian and Warner, 2011, p. 312). These options also provide a means of coping with the condition through physical improvements to mask its symptoms.
In regards to sexual health, “A study of 50 adolescent girls with PCOS in Singapore demonstrated that affected participants were highly concerned about their attractiveness to the opposite sex and possible infertility. None of the girls in the study were sexually active. No research to date has examined fertility concerns and sexual behavior among adolescent girls with PCOS in the United States” (Trent et.al, 2003, p. 33). Under these circumstances, it is necessary to consider the role that fertility plays in determining the quality of life of adolescent females with PCOS. Since many young girls tend to think about their future lives and their ability to have children someday, it is not surprising that fertility and related concerns could have a lasting impact on their quality of life if problems are detected. These issues also support the ability to expand upon the issues that are most important to adolescent females with PCOS to achieve a greater sense of what treatment alternatives and interventions are required for this population group in managing the effects of this condition. It is known that “Medications that improve ovulation induction and in vitro fertilization have drastically changed the landscape of fertility care in these young women. Adolescent medicine providers and pediatric gynecologists can therefore be optimistic in answering questions about future fertility and try to focus the young woman and her parents on issues that are pertinent to adolescence such as acne, hirsutism, menstrual abnormality, and obesity. Parents and health care providers, however, must be aware of internet resources and adult-oriented fertility materials that, without discussion, could potentially distort how the young woman with PCOS views her condition” (Trent et.al, 2003, p. 36). These criteria provide further evidence that there are greater opportunities to expand upon variable therapeutic interventions and treatment alternatives to provide some level of reassurance that PCOS is manageable (Trent et.al, 2003). However, care must be exercised when addressing these options so that adolescents are aware of the issues and risks associated with this condition, and that the outcomes may be different for each individual patient (Trent et.al, 2003).
For many adolescent females with PCOS, “one of the most important yet overlooked reasons for adequate screening and treatment of PCOS in adolescents is the quality-of-life issue that weighs so heavily on patients. Because of the phenotype of this disorder, girls with PCOS experience a great emotional and psychological burden. Many of the symptoms common to PCOS, such as excess hair growth, acne, alopecia, and obesity, cause the patients to experience social trauma during a period when social acceptance is especially greatly valued, leading to higher rates of depression. Some PCOS adolescents become unhappy with their appearance at a point in their life where personality growth occurs most dramatically, which can have a severe negative impact on their self-esteem, confidence, and self-respect during their teens and beyond” (Salmi et.al, 2004). As a result, it is necessary to determine the tools that are necessary to positively impact this patient population during a particularly difficult phase of the life span (Salmi et.al, 2004). A variety of therapeutic interventions might be available to encourage adolescent females to discuss their concerns and to recognize their limitations in regards to PCOS (Salmi et.al, 2004). At the same time, these efforts should also incorporate new strategies that will enable females in this age group to develop a greater understanding of PCOS and how it impacts their daily lives from a physical point of view (Salmi et.al, 2004).
This chart reflects the different challenges that are evident in addressing the primary concerns of PCOS and their impact on female patients. These risks also apply to adolescent females, with the primary difference being that their psychological wellbeing and quality of life are often impacted more negatively than those of adult women. This process supports the development of new factors which are important in supporting the development of new strategic approaches to PCOS for adolescent patients who require both physical and emotional support. It is known that “The higher prevalence and severity of anxiety and depression in PCOS is likely to impact on ability to follow treatment and management plans and overall QoL. Lifestyle interventions are first line treatment for PCOS and small changes to lifestyle are known to decrease weight, improve symptoms, increase ovulation and improve fertility. Yet to undertake lifestyle change requires motivation and self efficacy which are limited by depression and/or anxiety. Recognition of poor emotional wellbeing in PCOS may prompt intervention and improve clinical outcomes in this chronic and common condition” (Jean Hailes Foundation for Women’s Health, 2011). As a result, it is important to recognize patterns of anxiety and depression in adolescent patients so that all possible ideas and concepts are explored to enhance treatment and coping alternatives (Jean Hailes Foundation for Women’s Health, 2011). One of the most important requirements for adolescent PCOS patients is that the most relevant issues to their age group are addressed, such as self-esteem and how the condition might impact their physical appearance. This age group is particularly vulnerable to these concerns and therefore, they should be provided with the tools that are necessary to address these concerns directly with patients and their families. This process also encourages the development of new strategic approaches to shed some light on the serious nature of this condition and its impact on adolescent females. In addition, “Living with a chronic condition such as PCOS can negatively impact on emotional health. Symptoms of PCOS including excess hair growth, acne, weight changes and fertility problems may negatively affect mood, sexual function, self esteem, body image and perceptions of femininity. The physical and emotional symptoms of PCOS may also make some women more prone to disordered eating. Anxiety and depression are commonly experienced by women with PCOS, but are often overlooked and therefore left untreated. Approximately 34 per cent of women with PCOS have depression compared to 7 per cent of women in the general population and around 45 per cent have anxiety, compared to only 18 per cent of the general population” (Jean Hailes Foundation for Women’s Health, 2011). The treatment of depressive symptoms related to PCOS may be difficult in some cases, but it is important for clinicians and therapists to search for the root cause of this depression, and to also encourage adolescent females to share their thoughts and perceptions regarding the condition to ensure that all possible needs are met in treating these symptoms.
It is known that “Treatment aims in PCOS include optimising healthy weight, improving underlying hormonal disturbances, prevention of future reproductive and metabolic complications and improving quality of life. Lifestyle (dietary, exercise or both) interventions are recommended first-line in an international position statement on PCOS…Lifestyle interventions may also be of use in weight management, prevention of excess weight gain and prevention of future reproductive and metabolic complications” (Moran et.al, 2011). Although these treatment strategies are common, they are sometimes difficult to manage and require particular attention and consideration in different ways, particularly for adolescent females. A combination of methods is often required, which are designed to positively influence the needs of this unique population group with a higher sense of vulnerability and peer influence. Since these options are available, how they are integrated into existing processes is very important: “The deleterious effect of PCOS on quality of life, anxiety and depression is increasingly recognised and these are important issues to treat in conjunction with anthropometric, reproductive and metabolic outcomes” (Moran et.al, 2011).
In future studies, “Of key importance is the future assessment of quality of life and participant satisfaction with lifestyle intervention in PCOS. Future research also needs to increase consistency in the reporting of data on menstrual regularity and ovulation. It is not possible to state from the existing research whether the lack of an intervention effect on glucose and lipid outcomes is due to the degree of weight loss achieved, clinical heterogeneity, or to the small sample size and moderate study durations available for review. Future research should therefore assess the effect of a range of weight losses on primary and secondary outcomes to determine optimal weight loss for all clinical improvements” (Moran et.al, 2011). Under these conditions, it is essential to determine how to best move forward in obtaining the best possible methods of treatment for adolescent females, using a set of pre-determined criteria to ensure that these needs are met in an effective manner. This is an important topic for further discussion and consideration in future studies which focus on PCOS in this population group.
Finally, one study demonstrates that “Health care providers who care for girls with PCOS should be aware that these patients are significantly more concerned about fertility than their peers, and should be prepared to address these concerns as a part of clinical care. Although girls with PCOS are less likely than their peers to be sexually active, many of the young women with PCOS in this practice were sexually active. This suggests the importance of ongoing counseling and education on STD/HIV risk self-assessment and reduction, reproductive and sexuality issues, contraceptive options in the context of a PCOS diagnosis, and sexual relationship and contraceptive negotiation” (Trent et.al, 2003, p. 36). This is important because it provides a basis for the evaluation of new ideas related to PCOS and how it impacts adolescent females, as well as the different challenges that are related to maintaining a sense of control over the condition within this population group. It is expected that when proper attention is paid to PCOS in adolescent females, then there is a greater likelihood that treatments will enable females to exercise greater control over the condition, thereby leading to a higher level of comfort with its possible outcomes.
Evaluating the quality of life in adolescent females with PCOS requires a theoretical approach or method that will lead to successful outcomes for this population group. In using a prior study as a guide, the Child Health Questionnaire-Child Self-Report Form is a viable option to obtain information directly from patients regarding their experiences with PCOS and how they impact their quality of life (Trent et.al, 2002). According to the authors, “The tool consists of 12 summated subscales and is designed to measure the physical and psychosocial health of adolescents. The subscales include the following summary measures: (1) change in health in the last year, (2) role/social emotional, (3) role/social behavioral, (4) bodily pain, (5) behavior, (6) mental health, (7) self-esteem, (8) general health perceptions, (9) family activities, (10) family cohesion, (11) physical functioning, and (12) role/social physical” (Trent et.al, 2002, p. 558).
This type of survey instrument will provide a means of evaluating the quality of life of this population group, given their PCOS condition and its symptoms. In using this method, “The instrument consists of 26 questions in five domains that had the highest impact to women with PCOS: body hair, emotions, infertility, weight and menstrual problems. Validation of the instrument suggested that an additional domain may need to be added to assess acne. Each item asked on the PCOSQ is associated with a seven-point scale with a range from maximum impairment of HRQL (1) to no problems or difficulties (7). Lower scores on the PCOSQ indicate higher functioning” (Upadhya and Trent, 2007). These criteria suggest that it is necessary to address some of the most critical aspects of PCOS and its impact on quality of life as related to adolescent females. Since PCOS affects this population through a variety of symptom experiences, making comparisons or recommendations regarding a given course of treatment requires a relative understanding of how these symptoms impact different subgroups, such as those from various cultures (Upadhya and Trent, 2007). At the same time, the study instrument must explore a level of sensitivity that will recognize the delicate nature of this population and how it might be impacted by specific questions (Upadhya and Trent, 2007). These alternatives must be explored in greater detail to determine the questions that will be most effective in evaluating quality of life in different ways (Upadhya and Trent, 2007).
The proposed study design employs a questionnaire method, which serves as a means of exploring the quality of life of study participants more effectively. This design must provide questions that are easy to understand and are not excessively wordy, because this option may lead some participants to lose interest or to not fully understand the content of the questions. This process also provides the most simplistic means of exploring the topic in question without confusing the study population. Due to the sensitive nature of this population, it is important to recognize that questions geared toward an adolescent population must be simplistic and recognizable in terms of possible symptoms that might be addressed. However, the study design must be detailed enough to achieve the desired results, while remaining sensitive to specific issues that might impact adolescent responses.
The proposed study instrument will examine the different features of quality of life associated with PCOS from an adolescent population’s point of view. The study questionnaire will tap into the feelings and emotions that are being experienced by the study population with respect to their PCOS condition. This is an important yet complex scenario which requires further consideration and evaluation in the selected context. The proposed instrument will also provide a basis for the evaluation of data that will enable researchers to determine how to move forward with treatment and coping mechanisms in the future. The proposed instrument must evaluate the different areas of quality of life that are directly and indirectly impacted by PCOS in adolescent females, taking the vulnerability and sensitivity of this population into further consideration.
Data Collection Procedure
In the modern era, data collection has become increasingly mobile, whereby instruments which are available online may replace the more traditional paper surveys and questionnaires: “We expect the commonly used paper format of the CHQ and other health questionnaires to be increasingly replaced by internet versions, especially in adolescent populations that are accustomed to the use of computers and the internet. From the perspective of clinicians and researchers, the advantages of using the internet include avoiding paper work, on-line data-entry, and procedures designed to reduce the number of missing answers and the length of questionnaires” (Raat et.al, 2007). Therefore, the proposed questionnaire will be provided in an online format to qualified study participants. This will ensure that the selected adolescent group will be more likely to participate.
Analyzing quality of life data for adolescent females with PCOS requires an analysis technique that will satisfy the study’s purpose and primary objectives. This is an important set of circumstances which impacts adolescent females in different ways, yet complicates their daily routines and their overall quality of life. The data that is derived from the study will provide a basis for the exploration of new treatments and/or interventions that are designed to improve the quality of life for these individuals, and which will evaluate perceptions provided by study participants. This task will encourage the development of new resources and methods to improve coping skills and other factors which contribute to the ability of adolescent females with PCOS to better manage their condition.
Data analysis should be achieved using a proven statistical method, such as SPSS, which will provide the researchers with the tools that are necessary to achieve the desired outcomes within this group. At the same time, the data analysis technique must be accurate and detailed so that quantifiable results might be derived from the study results. This process should also consider the different aspects of PCOS that may lead to questions regarding the quality of life and how the condition impacts adolescent females. When these questions are answered, better solutions might be derived that will provide some degree of encouragement to patients in this age group who suffer from this condition. The data analysis component should also recognize the different aspects of care and treatment that will be most effective in demonstrating the value of the study and the data collection technique and instrument that is chosen for further evaluation. Under these conditions, it is important to address the impact of the study and its data on how adolescent females with PCOS are treated in both a clinical and a psychosocial environment, and to determine the extent of the impact of its symptoms on the quality of life of this population group. Physical symptoms are likely to be important contributors to a reduced quality of life in many of these individuals, such as hair growth and other physically recognizable characteristics. At the same time, these traits may have a lasting impact on overall wellbeing and quality of life because the majority of adolescent females are affected by their physical appearance and how they are perceived by others, such as their peers. These impacts are influential in shaping how they perceive their lives and how peer influences play a role. The outcomes of a study of this nature may provide further insights into what tools are necessary to improve or mask the physical symptoms of PCOS so that there is a greater sense of control, as well as a greater understanding of the condition as a whole. This may lead to improved treatment alternatives and decision-making capabilities for this population group, as well as improved coping skills. These options are essential because they encourage adolescent females to expand their knowledge and understanding of PCOS and how it influences their daily lives.
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