Document Type

Dissertation

Degree

Ph.D.

Degree Granting Department

Public Health

Major Professor

Ellen Daley

Co-Major Professor

Stephanie Marhefka

Keywords

chronic illness, common sense model, health-related quality of life, women's health

Abstract

Polycystic ovary syndrome (PCOS) is a chronic illness that affects approximately five million premenopausal women in the United States and is associated with significant cosmetic, reproductive, metabolic, and psychological consequences. Despite its prevalence, few studies have explored the lived experiences and illness perceptions of women living with PCOS. Identifying illness perceptions of women living with (WLW) PCOS is important, because mounting research suggests that a person's perceptions of their chronic illness and its management determine that person's coping behaviors (e.g., adherence, self-management) and, consequently, illness outcomes.

In this dissertation, the Common Sense Model (CSM) is used as a framework to identify the illness perceptions of PCOS held by WLW the syndrome. As such, this dissertation is the first to test the ecological validity of the CSM in a population of women diagnosed with PCOS. In addition, the relationship between illness perceptions and (1) infertility, a common symptom of the syndrome, and (2) health-related quality of life (HRQoL) is explored. Lastly, this study makes a novel contribution to the literature by describing one of the first samples of WLW PCOS recruited through a social networking site. This includes a discussion of the participant's demographic information, fertility experiences, and HRQoL.

This is a two-phase mixed methods study. Phase one consisted of an online quantitative survey capturing data on 376 participants' demographic information and medical history. Data were also collected on each participant's HRQoL using the SF-36, a generic, well-validated measure of the phenomenon. Of the 376 survey participants, 34 were interviewed via phone or video chat in the fall 2013 and spring 2014 semesters. Quantitative data were downloaded from Qualtrics® and analyzed using SAS statistical software version 9.3. In this analysis, descriptive statistics were generated to describe sample characteristics and SF-36 domain scores were calculated for each participant. In the qualitative analysis, data were analyzed through a series of sorting techniques and transcripts were imported into NVivo 10 and subjected to content analysis.

The mean age of survey participants was 31.8 years (SD=5.8). Respondents were primarily non-Hispanic (92.5%), white (88.3%), straight (94.4%), and married (73.4%) with a college education (64.1%). On average, participants reported living with PCOS for 7.6 years (SD=6.1). Approximately half of the sample reported having biological children (47.9%) and currently trying to conceive (42.1%), and most participants reported a history of infertility (70.7%). In addition, almost half of the total sample reported heights and weights that placed them in the morbidly obese category (BMI>35). Lastly, a history of depression (63.6%) and anxiety (68.6%) was common among participants.

Few survey participants reported their general health as being excellent (2.6%) or very good (27.4%). Similarly, women reported the lowest levels of functioning on the dimension of vitality, meaning that, in general, women reported feeling tired and being low in energy. Conversely, women reported the highest scores on the dimensions of physical functioning and role limitations due to physical health, meaning that, in general, women did not report that their health limited their physical abilities or caused problems with work or other daily activities.

Interview findings suggest that WLW PCOS generally have illness perceptions of the syndrome that are consistent with the domains identified in the CSM. In addition, it was found that, in relation to their illness cognitions, WLW PCOS described the extent to which they felt they had a comprehensive understanding of the syndrome, a phenomenon labeled illness coherence. Similarly, participants identified PCOS as a common condition (i.e. labeled perceived prevalence). Lastly, a number of relationships were identified between illness perceptions and (1) infertility status and (2) HRQoL scores.

Overall, this dissertation identifies a number of implications for patient education, provider education, clinical practice, and policy improvements. Examples include addressing (1) unmet information needs, (2) significant psychological morbidity and unmet mental health needs, (3) breastfeeding challenges and need for breastfeeding support, (4) poor quality of care and low patient satisfaction, and (5) limited access to care - all among women living with PCOS.

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