Sexual and Reproductive Health Needs of Women with Polycystic Ovarian Syndrome: A Scoping Review and Narrative Synthesis

Background: Polycystic ovarian syndrome (PCOs) is one of the most common endocrine disorders in women throughout the world affecting their sexual/ reproductive health (SRH). Objective: This scoping review aims to identify SRH needs of women with PCOs Methods: PubMed, SCOPUS, Google Scholar, MEDLINE, Science Direct, Ovid and the Cochrane Library were screened from 2000 to 2019. English or Persian peer reviewed and gray literature sources were included. In the primary search, 52 articles were obtained; and finally by narrative synthesis framework for quality assessment, and data analysis and synthesis 27 articles were analyzed. Results: From the 27 selected articles, 9 main themes were obtained i.e.: Complications and problems affecting patients, Lifelong effect of PCOs on reproductive patterns , PCOs and adverse reproductive and pregnancy outcomes, Information needs and preferences of patients about health outcomes and their application for treatment and management of lifelong health outcomes, Financial burden of disease, The effect of PCOs on life experiences and quality of life of affected women, Sexual disorders, Psychological concerns and issues, Femininity feelings and roles Conclusion: Comparison of the 9 themes developed in this study with SRH needs in women, revealed that some of the issues, such as psychological challenges, patients' femininity feelings and roles and financial burden of disease have been ignored in providing SRH services, and should be taken into consideration. and reproductive


1
). Today, health and welfare of women, who make up half of the population, is not only recognized as a human right, but its effect on the health of the family and society has also become increasingly important ( 2 ).
One of the important aspects of every woman' health during her lifetime is sexual /reproductive health (SRH) and related needs. According to the World Health Organization (WHO), reproductive health refers to physical, mental and social wellbeing related to the reproductive system and its function ( 3 , 4 ).
The issue of reproductive health contains a range of health services throughout life from birth to death; its aim is to help individuals and families to improve their health (   5  ,   6 ).
Without SRH, women will not be able to achieve their other rights too. according to published statistics on the burden of diseases, 22 percent of lost lives in women of reproductive age is due to the neglect of reproductive rights and related health problems ( 7-9 ). On the other hand promoting SRH has been considered to be essential in achieving the Millennium Development Goals ( 10 ) .

An important disease that affecting various aspects of women's health is Polycystic
Ovarian Syndrome (PCOs), which is the most common endocrine disorder in women.
This syndrome is a combination of Hyperandrogenism, chronic anovulation and polycystic ovaries, and is usually associated with insulin resistance and obesity.
This syndrome has major effects on women's lives because of its high prevalence (varying between 2.2 to 26% in different regions) ( 11 , 12 ).
PCOs research has shown that the quality of life of women with PCOs is lower in comparison to other women. Many aspects of women's health are affected by this syndrome which can significantly reduce the patients' quality of life ( 13 , 14 ).
In recent decades, the focus on the quality of health services has increased significantly. But despite the significant success of health systems in promoting community health, there is still a considerable gap in achieving desirable conditions in SRH domain ( 15 ). Therefore taking a comprehensive approach to SRH, enables service providers to identify needs (

).
Many studies in women with PCOs have addressed different medical and health needs such as infertility, metabolic disorders, mental disorders and quality of life (   14 ), but there is little evidence about sexual /reproductive health needs of women with PCOs. Therefore, the present scoping review study was performed to identify these needs in women with PCOs.

Methods
The present study is a "scoping review" about SRH needs of women with PCOs women's health needs; reproductive health needs.

2-3-2-Search results and quality appraisal:
At first, articles related to the research question were identified (52 articles). In the preliminary review, irrelevant articles were identified and removed. After applying the inclusion and exclusion criteria and removing irrelevant and repeated articles, 42 articles were selected. For quality assessment of the articles, PRISMA flow chart and data extraction guide of Popay was used which was adapted for checking robustness of both qualitative and quantitative studies. The articles were independently studied by two researchers for quality appraisal and relevance assessment and the related papers were identified. In case of disagreement, the article was judged by a third researcher ( 18 , 19 ). Finally, from 42 articles, 27 papers were selected, of which 25 articles (92.6%) were published in English and 2 articles (7.4%) were in Persian ( Figure 1).

2-4-1-Methods used in studies
The methods used in selected articles were:

Risk of bias:
For minimizing the risk of bias, the double check process of validation was performed. Also the risk of bias in the included studies was assessed by Cochrane risk of bias tool and completeness of reporting outcome data (attrition bias), and selective outcome reporting (reporting bias). Also, by searching on different websites and platforms, we tried to minimize selection bias in the selection of articles.

Data analysis:
Data was analyzed by narrative synthesis method. It is used when statistical metaanalysis or another special form of synthesis is not feasible due to substantial methodological and clinical heterogeneity between studies identified. This method has four main elements: 1-Developing a theory, 2-Preliminary synthesis of findings of the included studies, 3-Exploring relationships in the data, 4-Assessing the robustness of the synthesis (19). In "developing the theory", we needed to have a clear understanding of sexual and reproductive health needs in PCOs women, so we began purposefully searching and exploring SRH needs and its categories. All articles were initially screened by two reviewers who independently reviewed titles and abstracts of the studies to accept or reject the full text paper. Thus after assessing the quality of the articles, the selected articles were identified. In the second step -"developing a preliminary synthesis of the findings", data was extracted from eligible studies and converted to primary codes. Reviewers discussed any disagreements in the data extracted, and referral to a third reviewer 8 was done to resolve any disputes. In the third step "Exploring relationships in the data ", primary codes were assessed by the reviewers and categorized based on the found relationships. Finally themes were extracted from the primary codes. In this way, the primary codes were extracted from the texts of the selected articles, and then the main themes were formed from these codes. For "Assessing the robustness of the synthesis ", the basic concepts extracted of articles were performed by three reviewers to be sure of the concordance of the obtained themes with the texts. Then the primary codes were categorized into specific categories.

Results
96 Primary codes were derived from reviewed material about needs, problems and complications related to sexual / reproductive health of women with PCOs. Then, 9 themes were extracted from these 96 Primary codes. Table 2 Table 3 shows a sample of extracting primary codes from texts and then forming a theme (theme A).

Discussion
In this study, out of 27 selected articles, 96 primary codes were derived about the needs, problems and complications related to SRH needs of women with PCOs.
Finally, 9 main themes were extracted from these codes. These 9 themes were compared with the 6 domains of SRH needs in "Assessment of Sexual Wellness  43 ). In Zangeneh study, clinical signs of PCOs were associated with psychiatric disorders and it was recommended to consider these disorders in the diagnosis and treatment of PCOs (45). Therefore, it seems that these women, as soon as the disease is diagnosed, require screening for psychological disorders and Studies have indicated that with increasing age of patients, if there is no suitable management of the disease process, the risk of cancer is elevated. Rezayat study has shown that PCOs is a common endocrine disorder that, in addition to producing reproductive problems, is known to be a risk factor for breast and reproductive system cancers (including endometrial and ovarian tumors). Obesity and endocrine disorders that are caused by PCOs are two of the most important risk factors for women's cancers, including ovarian and breast cancers (   47 ). Shaebani study also highlights the increased risk of breast and ovarian cancers among women with PCOs, especially in long-term complications. Therefore, it seems that paying attention to and screening for cancers in women with PCOs is very important and should be considered as a major SRH need in them ( 48 ).

Conclusion
The findings showed that in many health systems designed to provide SRH services, the needs of patients with PCOs were not specifically considered and their needs were approached as ordinary women. The articles showed that the disease and its complications have a high financial burden that is often ignored in identifying and evaluating SRH needs of women. Also, the chronic nature of the disease effects mental status of the patients and the psychological consequences of disease, are often hidden and not paid attention to. The provision of services to women with PCOs lacks continuity and integrity, thus in identification and provision of SRH services to these women, there is a gap. According to evidence, since PCOs can affect the entire life of a woman, patients need different services, and health systems should try to provide the best of services based on their limited resources.
Therefore, studies such as the present study can offer that SRH needs in women with PCOs have to be addressed in a complete package in the form of protocols and guidelines that are based on the actual needs of the patients.
Limitations: The limitations of the present study were that, since many studies did not address the needs of women's reproductive / sexual health, we had to use all the data and articles published in this area, including qualitative/ quantitative methods, lectures, and guidelines. Also, due to this heterogeneity in the methodology of the selected articles, there was no meta-analysis possible.