AlSumri, H.S.
(2019)
Poly cystic ovarian syndrome (PCOS) in Oman: effects in pregnancy, psychosocial aspects of infertility and quality of infertility care from patients’ and healthcare providers’ perspectives.
PhD thesis, University of Nottingham.
Abstract
Background
Poly cystic ovarian syndrome (PCOS) is a common endocrine problem among women of reproductive age. The estimated prevalence is 6-12% worldwide using the Rotterdam diagnostic criteria. A recent study showed a prevalence of 7% in Oman. Evidence is lacking about the association of PCOS and the reproductive health of women in the Middle East including Oman. Despite extensive research, it is still unclear whether PCOS carries an increased risk of adverse outcomes in mothers and their newborns. PCOS is also a common cause of anovulatory infertility. However, the psychosocial impact of infertility experienced by women with PCOS is a neglected research area. Studying the lived experience of infertility among Omani women is important, given the cultural context of the region where no evidence is yet available. Furthermore in attempting to evaluate fertility services it is vital to understand both patients’ and healthcare providers’ (HCPs) perceptions on the care provided in fertility clinics to identify ways in which this aspect of care could be improved.
Aim
The aim of this thesis was to investigate the impact of PCOS on different reproductive outcomes among Omani women. First, it aimed to examine the effects of PCOS on pregnant women and their newborns. Second, it sought to understand the psychosocial impact of infertility among women with PCOS, within the Omani culture. Thirdly, it aimed to understand both women’s and HCPs’ views and perceptions on the current available fertility services, particularly the attention given to patients’ emotional wellbeing.
Methods
Three studies were carried out in two tertiary centres, located in the capital city of Oman -Muscat.
The first was a quantitative cohort study using patients’ electronic hospital health records to assess the association between PCOS and pregnancy outcomes in women (gestational diabetes mellitus (GDM), pregnancy induced hypertension (PIH), preeclampsia, miscarriage, stillbirth, preterm-delivery and undergoing caesarean section (C-section)) and their newborns (macrosomia, low weight for gestational age (LWGA), low APGAR score, and admission to neonatal unit (NICU)). The unit of analysis was the pregnancy. Multilevel multivariable regression models were used to obtain adjusted odds ratios (ORs) for outcomes along with 95% confidence intervals (95% CI) using STATA software.
Two qualitative studies using semi-structured interviews were conducted. The first explored the psychosocial experience of infertility among Omani women with PCOS and their experiences with fertility care. The second study explored HCPs’ views on the quality of services provided in fertility clinics including the extent to which emotional support is offered to patients. Interviews were digitally audio-recorded, transcribed verbatim and analysed using the framework approach.
Results
A study population of 1,939 pregnancies were enumerated from a total of 922 women of which 305 (contributed 529 pregnancies) had a diagnosis of PCOS. Women with PCOS were more likely to develop adverse metabolic outcomes during pregnancy compared to women without PCOS. They were more likely to develop GDM (odds ratio (OR) =2.31, 95% CI 1.38 - 4.10); and PIH (2.65, 1.11-6.31), however no difference was found in the odds to develop preeclampsia (2.86, 0.66-12.46). Adverse birth outcomes of miscarriage and preterm delivery were also higher in pregnancies where the mother had PCOS (3.41, 2.23–5.22) (3.13, 1.61-6.10), as was the risk of undergoing emergency C-section (3.64, 1.61-8.23), however no difference was found in the risk of stillbirth between the two groups (1.07,0.28-4.17). Compared to newborns to mothers without PCOS, newborns to mothers with PCOS were not at increased risk of macrosomia (0.78, 0.04-14.70), LWGA (0.877, 0.34-2.28), low APGAR score (0.53, 0.08-3.63) or admission to NICU (0.48, 0.43-5.47).
Results from the qualitative interviews with women (n=20) showed that culturally, women were expected to conceive soon after marriage and most participants felt they were blamed for any delay. Participants revealed experiencing psychological and social pressures from their in laws, with admissions that their husbands were encouraged to consider remarrying. The majority of women mentioned being emotionally supported by their partners, however marital tensions were apparent in couples that had been experiencing infertility for longer. Women also shared feelings of guilt about being unable to bear children, loneliness, jealousy and feeling inferior to other women with children. The treatment process was also stressful for these women, where failed attempts seemed to worsen their emotional instability, given the perceived social pressure.
Finding from the interviews with HCPs showed they perceived the negative emotions prevalent among their patients, and recognised the role of social and medical stressors burdening them. However HCPs admitted their inability to approach or address patients’ emotional wellbeing, which was related to time constraints during the consultation due to, language barrier, the focus being to treat the organic cause, lack of training and some patients’ hesitancy to share feelings, due to social constraints. Nurses felt they had a stronger rapport with patients due to the better continuity of care provided by them compared to physicians. This suggests a potential more extended role of nurses in fertility clinics in providing patients with education and counselling compared to their current marginal role.
Patients and HCPs agreed on the need for emotional support to be provided as part of standard care in fertility clinics. Given the existing social, professional and institutional barriers, this support was suggested to be best provided by a psychologist within the clinic and to be carefully labelled to avoid the social stigma associated with mental illness. There were suggestions that women with PCOS face different challenges due to the nature of the condition, and thus the need for emotional support may be greater compared to other infertile women.
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