The Needs of Women and Healthcare Providers regarding Polycystic Ovary Syndrome Information, Resources, and Education: A Systematic Search and Narrative Review

2018 ◽  
Vol 36 (01) ◽  
pp. 035-041 ◽  
Author(s):  
Eliza Tassone ◽  
Helena Teede ◽  
Anuja Dokras ◽  
Rhonda Garad ◽  
Melanie Gibson-Helm
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Information Needs ◽  
Best Practice ◽  
Polycystic Ovary ◽  
Healthcare Providers ◽  
Indirect Evidence ◽  
Research Literature ◽  
Systematic Search ◽  
Ovary Syndrome ◽  
Perceived Needs

AbstractThis article aims to identify and summarize the information, resource, and education needs of women with polycystic ovary syndrome (PCOS) and their healthcare providers. A systematic search of peer-reviewed, primary research literature was conducted. A total of 4,230 articles were identified, duplicates were removed, as well as the title and abstract of 2,819 studies and the full texts of 123 studies were screened against predetermined inclusion criteria. Findings from 35 included studies are described narratively. Main outcome measures include women's perceived needs for, and experiences of, PCOS care and information; healthcare providers' delivery of PCOS care and information; and healthcare providers' perceived needs for PCOS information, education programs, or professional development. There is a wealth of literature informing how PCOS information, education, and resources can better meet the needs of women, and about the role women expect healthcare providers to play in providing information within optimal PCOS care. However, few studies evaluate how well existing resources meet women's diverse needs. There is growing indirect evidence about the information and education needed by healthcare providers to provide best-practice PCOS care. However, little research has directly investigated healthcare providers' information needs or efficacy of PCOS-specific educational programs for healthcare providers. PCOS resources for women should be comprehensive, evidence-based, include the bio-psychosocial dimensions of the condition, and available through a variety of modes. The range of healthcare providers that women may seek care from need resources to support consistent use of the recommended diagnostic criteria, effective recommendation of lifestyle management, and early detection and treatment of symptoms and complications.

Evaluation of a Center of Research Excellence in Polycystic Ovary Syndrome as a Large-Scale Collaborative Research Translation Initiative, Including Evaluating Translation of Guideline Impact

2018 ◽  
Vol 36 (01) ◽  
pp. 042-049
Author(s):  
Samantha Kozica-Olenski ◽  
Helena Teede ◽  
Rhonda Garad
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Large Scale ◽  
Best Practice ◽  
Polycystic Ovary ◽  
Research Translation ◽  
Ovary Syndrome ◽  
Practice Approach ◽  
Research Benefit ◽  
Research Excellence ◽  
Evidence Based Guideline

AbstractResearch translation and evaluation are often underconsidered in research design and implementation thus limiting research benefit to the end user. In this article, we first describe a best practice approach to evaluation, for a center of research excellence in polycystic ovary syndrome. Within this, we outline a comprehensive research translation program with inbuilt evaluation of the first International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome (2018). We seek to provide a real-world example of comprehensive approaches to evaluation and research translation.

scholarly journals Barriers and Facilitators to the Implementation of Evidence-Based Lifestyle Management in Polycystic Ovary Syndrome: A Narrative Review

2019 ◽  
Vol 7 (7) ◽  
pp. 76 ◽  
Author(s):  
Blackshaw ◽  
Chhour ◽  
Stepto ◽  
Lim
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Polycystic Ovary ◽  
Healthcare Providers ◽  
Implementation Strategies ◽  
Barriers And Facilitators ◽  
Evidence Based ◽  
Ovary Syndrome ◽  
Lifestyle Management ◽  
Increased Risk ◽  
Evidence Based Guideline

Polycystic ovary syndrome (PCOS) is a complex condition that involves metabolic, psychological and reproductive complications. Insulin resistance underlies much of the pathophysiology and symptomatology of the condition and contributes to long term complications including cardiovascular disease and diabetes. Women with PCOS are at increased risk of obesity which further compounds metabolic, reproductive and psychological risks. Lifestyle interventions including diet, exercise and behavioural management have been shown to improve PCOS presentations across the reproductive, metabolic and psychological spectrum and are recommended as first line treatment for any presentation of PCOS in women with excess weight by the International Evidence-based Guideline for the Assessment and Management of Polycystic Ovary Syndrome 2018. However, there is a paucity of research on the implementation lifestyle management in women with PCOS by healthcare providers. Limited existing evidence indicates lifestyle management is not consistently provided and not meeting the needs of the patients. In this review, barriers and facilitators to the implementation of evidence-based lifestyle management in reference to PCOS are discussed in the context of a federally-funded health system. This review highlights the need for targeted research on the knowledge and practice of PCOS healthcare providers to best inform implementation strategies for the translation of the PCOS guidelines on lifestyle management in PCOS.

scholarly journals Are Young Adult Women With Polycystic Ovary Syndrome Slipping Through the Healthcare Cracks?

2014 ◽  
Vol 99 (5) ◽  
pp. 1583-1585 ◽  
Author(s):  
Anuja Dokras ◽  
Selma Feldman Witchel
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Polycystic Ovary ◽  
Early Adulthood ◽  
Healthcare Providers ◽  
Physician Education ◽  
Adult Women ◽  
Ovary Syndrome ◽  
Presenting Symptoms ◽  
Increased Risk ◽  
Entry Points

Polycystic ovary syndrome (PCOS) is a common endocrine disorder often diagnosed in adolescence or early adulthood. In adolescence, the many similarities between normal features of puberty and symptoms of PCOS make it challenging to confirm the diagnosis. Even among adult women, the changing definitions of PCOS may lead to inaccurate diagnoses. Women may present with a variety of symptoms to different healthcare providers and may be treated only for the presenting symptoms without evaluation of the syndrome and its associated morbidities. Timely evaluations, accurate diagnosis, appropriate interventions, and multidisciplinary healthcare teams can be valuable because women with PCOS have an increased risk for obesity, impaired glucose tolerance, diabetes, dyslipidemia, metabolic syndrome, infertility, endometrial cancer, and anxiety and mood disorders. Appropriate transition of care for the adolescent from pediatric to adult healthcare providers should include education of the patient and her parents regarding the chronic nature of the syndrome and the need for continued follow-up. Girls with symptoms suggestive of PCOS who fail to fulfill diagnostic criteria should undergo prolonged observation. Early identification of PCOS at different entry points in the healthcare system will require physician education and improved access.

Ask PCOS: Identifying Need to Inform Evidence-Based App Development for Polycystic Ovary Syndrome

2018 ◽  
Vol 36 (01) ◽  
pp. 059-065 ◽  
Author(s):  
Rebecca Xu ◽  
Emily Gilbert ◽  
Millicent Kuczynska-Burggraf ◽  
Bryan Tan ◽  
Helena Teede ◽  
...  
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Mobile Health ◽  
Information Needs ◽  
Rating Scale ◽  
Polycystic Ovary ◽  
Current Evidence ◽  
Evidence Based ◽  
Ovary Syndrome ◽  
Health Apps ◽  
Mobile Health Apps

Background People are increasingly seeking health information and managing their health through electronic technologies. We aimed to determine if women with polycystic ovary syndrome (PCOS) identified a need for PCOS-related mobile health apps and to evaluate related apps currently available. Design A national survey of women and a review of apps available on the iOS and Android platforms. Setting Community recruitment in Australia in 2016 and review of mobile apps available in 2017. Sample The survey received 264 responses. Sixteen apps related to PCOS were evaluated. Main Outcome Measures Survey: Women's likeliness to use mobile health apps, specifically a PCOS-related app and preferred features of apps. App review: Mapping of available apps and evaluation using the Mobile Application Rating Scale (MARS). Results Of 264 respondents, almost all women had a smartphone (98%), 72% had previously used an app to manage their health, and most (91%) would use a PCOS-specific app if available. The most important feature was the availability of current, evidence-based information. Current apps on PCOS lack provision of quality information. Conclusion Women with PCOS would use a PCOS-specific app of good quality that responds to their needs and facilitates self-care; however, currently available apps are unlikely to meet their information needs.

Personalized Mobile Tool AskPCOS Delivering Evidence-Based Quality Information about Polycystic Ovary Syndrome

2018 ◽  
Vol 36 (01) ◽  
pp. 066-072 ◽  
Author(s):  
Jue Xie ◽  
Frada Burstein ◽  
Helena Teede ◽  
Jacqueline Boyle ◽  
Rhonda Garad
Keyword(s):  
Polycystic Ovary Syndrome ◽  
Information Needs ◽  
Polycystic Ovary ◽  
Mobile App ◽  
Innovative Technology ◽  
Health Practitioner ◽  
Evidence Based ◽  
Design Development ◽  
Ovary Syndrome ◽  
Optimize Health

AbstractDespite polycystic ovary syndrome (PCOS) being the most common endocrine condition affecting reproductive-aged women, studies have shown the information needs of PCOS consumers are not currently met. The expressed need by women with PCOS for accessible, evidence-based personalized PCOS information informed the design and development of the PCOS mobile tool—AskPCOS. The App provides a range of unique features such as: evidence-based PCOS health information, self-diagnostic function, a question prompt list to optimize health practitioner engagement, and a commonly asked questions list. A five-phase App development process involved extensive stakeholder consultation, system architecture design, development of the content repository, system prototyping, and evaluation. AskPCOS is the first evidence-based, consumer-driven mobile App developed by women and for women with PCOS and utilizes innovative technology to empower PCOS consumers and optimize health outcomes. The App content repository is enhanced by the best available evidence and expertise extracted from the International Evidence-Based Guideline in PCOS (2018). The AskPCOS App has extensive data capture capability through the usage of data gathering functions and backend analytics to optimize responsiveness to consumer needs. In addition, the multilingual content and not-for-profit cost model is designed to facilitate worldwide adoption of the tool, and address PCOS information inequities in developing countries.

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