sj-docx-2-dhj-10.1177_20552076231220787 - Supplemental material for Increasing trends in online information-seeking and decreasing trends of funded research for polycystic ovary syndrome: An 18-year joinpoint analysis of Google Trends data from 2004 to 2022

Supplemental material, sj-docx-2-dhj-10.1177_20552076231220787 for Increasing trends in online information-seeking and decreasing trends of funded research for polycystic ovary syndrome: An 18-year joinpoint analysis of Google Trends data from 2004 to 2022 by Kashish Malhotra and Punith Kempegowda in DIGITAL HEALTH</p

sj-docx-1-dhj-10.1177_20552076231220787 - Supplemental material for Increasing trends in online information-seeking and decreasing trends of funded research for polycystic ovary syndrome: An 18-year joinpoint analysis of Google Trends data from 2004 to 2022

Supplemental material, sj-docx-1-dhj-10.1177_20552076231220787 for Increasing trends in online information-seeking and decreasing trends of funded research for polycystic ovary syndrome: An 18-year joinpoint analysis of Google Trends data from 2004 to 2022 by Kashish Malhotra and Punith Kempegowda in DIGITAL HEALTH</p

DataSheet_1_Top 100 #PCOS influencers: Understanding who, why and how online content for PCOS is influenced.docx

BackgroundWith the exponential increase in digital space of social media platforms, a new group called social media influencers are driving online content of polycystic ovary syndrome (PCOS) which eventually influences behaviour and decision-making process. The objective of this study was to identify the top 100 social media (Twitter) influencers and organizations from across the globe who are advocating for PCOS. We further explored the origin and journey of these social media influencers.MethodsWe identified the top 100 PCOS influencers and organizations between July and August 2022 using three social network analysis tools- Cronycle, Symplur and SocioViz. These influencers were invited to a semi-structured interview to explore why they chose to become an influencer and the support they have to deliver their online content. Two independent authors coded the anonymised transcripts from these interviews and broad themes were identified by thematic inductive analysis.Results95.0% of individual influencers and 80% of organisations are from high-income countries. Most influencers in our study agree that social media is an essential tool in the present day to raise awareness of PCOS. However, they reiterated social media also has significant disadvantages that require consideration and caution. Most influencers were driven by poor personal experience and worked voluntarily to reduce misinformation and improve the experiences of women diagnosed with PCOS in the future. Although there is an interest in working together, there is currently minimal collaborative work between influencers.ConclusionThere is a global inequity of #PCOS influencers online. Establishing standards and support based on evidence may help develop more influencers, especially in low- and middle-income countries, so we can counter misinformation and provide locally acceptable guidance.</p

Image_1_Identifying the challenges and opportunities of PCOS awareness month by analysing its global digital impact.jpeg

Background and objectiveAlthough significant resources are invested each September for PCOS Awareness Month campaign, there are no studies measuring its impact. We evaluated the digital impact of PCOS Awareness Month, common themes and associated topics, top influencers, and global equity of influence during the PCOS Awareness month.MethodsIn this serial cross-sectional analysis, we studied the outputs from Symplur® to study the total impressions of #PCOS on Twitter®. We tracked the hashtags—#PCOS, #PCOSawarenessmonth, #PCOSawareness—and a search query— “#PCOS OR #PCOSawarenessmonth OR #PCOSawareness”—using Sproutsocial® to study the total number of tweets related to PCOS Awareness Month. Network analysis was done using SocioViz® to identify common themes and associated topics. Using SymplurRank® machine learning algorithm, the top 10 #PCOS influencers were identified based on the number of mentions received. Google® Trends was used to study the web and news search popularity over the last 10 years beyond social media platforms.ResultsAn overall upward trend in the digital impact of PCOS awareness was noted since 2017. While the top themes associated with PCOS (insulin resistance, depression, anxiety, menopause, hormones, infertility) remained the same in 2021 and 2022, newer themes emerged in the latter year suggesting the need for ongoing review. News outlets were the most influential organisations during PCOS Awareness Month in both years of study. Seven of the top 10 users were the same in both years. Limited engagement from African, Asian, South American, and non-English speaking European countries was seen on Google Trends analysis.ConclusionActive involvement from various stakeholders of PCOS Awareness Month has shaped it into an effective strategy to raise awareness with social media playing a crucial role in amplifying the message. Our findings also provide an opportunity to understand the current perceptions and expectations amongst the public, which can influence future healthcare investment and research.</p

Body image concerns in women with polycystic ovary syndrome: A systematic review and meta-analysis

Objective: To assess differences in body image concerns among women with and without polycystic ovary syndrome (PCOS). Design: This is a systematic review and meta-analysis. Methods: Electronic databases (MEDLINE, EMBASE, APA PsychInfo, PUBMED, Web-of-Science Core Collection, and Cochrane Controlled Register of Trials [CENTRAL]) were searched from inception through July 2022. Outcome measures included validated questionnaires reporting on body image concerns. Methodological quality was assessed by the Grading of Recommendations, Assessment, Development and Evaluations (GRADE) system, and included studies were assessed for risk of bias. Meta-analyses were performed using the inverse variance method based on random or fixed effects models (Review Manager, Version 5). Results: A total of 918 women with PCOS and 865 women without PCOS from 9 studies were included. Meta-analysis of 3 studies using Multidimensional Body-Self Relations Questionnaire Appearance Scale (MBSRQ-AS) showed those with PCOS reported higher dissatisfaction with appearance evaluation and appearance orientation compared to those without PCOS (mean difference [MD] = -0.78, I2 = 0%, P < .00001, and MD = 0.22, I2 = 54%, P = .004, respectively). Meta-analysis of 2 studies showed higher dissatisfaction with overweight preoccupation, lower body area satisfaction, and body weight classification on MBSRQ-AS subscales in those with PCOS compared to those without PCOS (all P < .001). Meta-analysis of 2 studies using the Body Esteem Scale for Adolescents and Adults (BESAA) showed significantly lower scores for the weight subscale in those with PCOS compared to those without PCOS (P = .03). Conclusions: Those with PCOS experience more significant body image concerns, emphasising the importance of awareness in the clinical care of PCOS. Considering the limited evidence, further studies are warranted to identify drivers and mitigating factors

Table_1_A systematic review of models of care for polycystic ovary syndrome highlights the gap in the literature, especially in developing countries.docx

IntroductionThe aim of the study was to identify available polycystic ovary syndrome (PCOS) models of care (MoCs) and describe their characteristics and alignment with the international PCOS guideline.MethodsOvid MEDLINE, All EBM, PsycINFO, Embase, and CINAHL were searched from inception until 11 July 2022. Any study with a description of a PCOS MoC was included. Non-evidence-based guidelines, abstracts, study protocols, and clinical trial registrations were excluded. We also excluded MoCs delivered in research settings to minimize care bias. Meta-analysis was not performed due to heterogeneity across MoCs. We describe and evaluate each MoC based on the recommendations made by the international evidence-based guideline for assessing and managing PCOS.ResultsOf 3,671 articles, six articles describing five MoCs were included in our systematic review. All MoCs described a multidisciplinary approach, including an endocrinologist, dietitian, gynecologist, psychologist, dermatologist, etc. Three MoCs described all aspects of PCOS care aligned with the international guideline recommendations. These include providing education on long-term risks, lifestyle interventions, screening and management of emotional well-being, cardiometabolic diseases, and the dermatological and reproductive elements of PCOS. Three MoCs evaluated patients’ and healthcare professionals’ satisfaction, with generally positive findings. Only one MoC explored the impact of their service on patients’ health outcomes and showed improvement in BMI.ConclusionThere is limited literature describing PCOS MoCs in routine practice. Future research should explore developing cost-effective co-created multidisciplinary PCOS MoCs globally. This may be facilitated by the exchange of best practices between institutions with an established MoC and those who are interested in setting one up.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=346539, identifier CRD42022346539.</p

Emotional and psychosexual well-being is influenced by ethnicity and birthplace in women and individuals with polycystic ovary syndrome in the UK and India

Objective: To assess the association of ethnicity and birthplace on emotional and psychosexual well-being in women with polycystic ovary syndrome (PCOS). Design: Cross-sectional study. Setting: Community recruitment via social media campaigns. Population: Women with PCOS completing an online questionnaire in September-October 2020 (UK) and May-June 2021 (India). Methods: The survey has five components, with a baseline information and sociodemographic section followed by four validated questionnaires: Hospital Anxiety and Depression Scale (HADS); Body Image Concern Inventory (BICI); Beliefs About Obese Persons Scale (BAOP); and Female Sexual Function Index (FSFI). Main outcome measures: We used adjusted linear and logistic regression models, adjusting for age, education, marital status and parity, to evaluate the impact of ethnicity and birthplace on questionnaire scores and outcomes (anxiety and/or depression, HADS ≥ 11; body dysmorphic disorder (BDD), BICI ≥ 72). Results: A total of 1008 women with PCOS were included. Women of non-white ethnicity (613/1008) reported higher rates of depression (OR 1.96, 95% CI 1.41-2.73) and lower BDD (OR 0.57, 95% CI 0.41-0.79) than white women (395/1008). Women born in India (453/1008) had higher anxiety (OR 1.57, 95% CI 1.00-2.46) and depression (OR 2.20, 95% CI 1.52-3.18) but lower BDD rates (OR 0.42, 95% CI 0.29-0.61) than women born in the UK (437/1008). All sexual domains, excluding desire, scored lower for non-white women and women born in India. Conclusions: Non-white women and women born in India reported higher emotional and sexual dysfunction, whereas white women and women born in the UK reported higher body image concerns and weight stigma. Ethnicity and birthplace need to be considered for tailored, multidisciplinary care.</p

Emotional and psychosexual well-being is influenced by ethnicity and birthplace in women and individuals with polycystic ovary syndrome in the UK and India

Objective: To assess the association of ethnicity and birthplace on emotional and psychosexual well-being in women with polycystic ovary syndrome (PCOS). Design: Cross-sectional study. Setting: Community recruitment via social media campaigns. Population: Women with PCOS completing an online questionnaire in September-October 2020 (UK) and May-June 2021 (India). Methods: The survey has five components, with a baseline information and sociodemographic section followed by four validated questionnaires: Hospital Anxiety and Depression Scale (HADS); Body Image Concern Inventory (BICI); Beliefs About Obese Persons Scale (BAOP); and Female Sexual Function Index (FSFI). Main outcome measures: We used adjusted linear and logistic regression models, adjusting for age, education, marital status and parity, to evaluate the impact of ethnicity and birthplace on questionnaire scores and outcomes (anxiety and/or depression, HADS ≥ 11; body dysmorphic disorder (BDD), BICI ≥ 72). Results: A total of 1008 women with PCOS were included. Women of non-white ethnicity (613/1008) reported higher rates of depression (OR 1.96, 95% CI 1.41-2.73) and lower BDD (OR 0.57, 95% CI 0.41-0.79) than white women (395/1008). Women born in India (453/1008) had higher anxiety (OR 1.57, 95% CI 1.00-2.46) and depression (OR 2.20, 95% CI 1.52-3.18) but lower BDD rates (OR 0.42, 95% CI 0.29-0.61) than women born in the UK (437/1008). All sexual domains, excluding desire, scored lower for non-white women and women born in India. Conclusions: Non-white women and women born in India reported higher emotional and sexual dysfunction, whereas white women and women born in the UK reported higher body image concerns and weight stigma. Ethnicity and birthplace need to be considered for tailored, multidisciplinary care.</p

Global, regional, and national burden of suicide, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021

Background: Deaths from suicide are a tragic yet preventable cause of mortality. Quantifying the burden of suicide to understand its geographical distribution, temporal trends, and variation by age and sex is an essential step in suicide prevention. We aimed to present a comprehensive set of global, regional, and national estimates of suicide burden. Methods: We produced estimates of the number of deaths and age-standardised mortality rates of suicide globally, regionally, and for 204 countries and territories from 1990 to 2021, and disaggregated these results by age and sex. The Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) 2021 estimates of deaths attributable to suicide were broken down into two comprehensive categories: those by firearms and those by other specified means. For this analysis, we also produced estimates of mean age at the time of death from suicide, incidence of suicide attempts compared with deaths, and age-standardised rates of suicide by firearm. We acquired data from vital registration, verbal autopsy, and mortality surveillance that included 23 782 study-location-years of data from GBD 2021. Point estimates were calculated from the average of 1000 randomly selected possible values of deaths from suicide by age, sex, and geographical location. 95% uncertainty intervals (UIs) were derived from the 2·5th and 97·5th percentiles from a 1000-draw distribution. Findings: Globally, 746 000 deaths (95% UI 692 000–800 000) from suicide occurred in 2021, including 519 000 deaths (485 000–556 000) among males and 227 000 (200 000–255 000) among females. The age-standardised mortality rate has declined over time, from 14·9 deaths (12·8–15·7) per 100 000 population in 1990 to 9·0 (8·3–9·6) per 100 000 in 2021. Regionally, mortality rates due to suicide were highest in eastern Europe (19·2 [17·5–20·8] per 100 000), southern sub-Saharan Africa (16·1 [14·0–18·3] per 100 000), and central sub-Saharan Africa (14·4 [11·0–19·1] per 100 000). The mean age at which individuals died from suicide progressively increased during the study period. For males, the mean age at death by suicide in 1990 was 43·0 years (38·0–45·8), increasing to 47·0 years (43·5–50·6) in 2021. For females, it was 41·9 years (30·9–46·7) in 1990 and 46·9 years (41·2–52·8) in 2021. The incidence of suicide attempts requiring medical care was consistently higher at the regional level for females than for males. The number of deaths by suicide using firearms was higher for males than for females, and substantially varied by country and region. The countries with the highest age-standardised rate of suicides attributable to firearms in 2021 were the USA, Uruguay, and Venezuela. Interpretation: Deaths from suicide remain variable by age and sex and across geographical locations, although population mortality rates have continued to improve globally since the 1990s. This study presents, for the first time in GBD, a quantification of the mean age at the time of suicide death, alongside comprehensive estimates of the burden of suicide throughout the world. These analyses will help guide future approaches to reduce suicide mortality that consider a public health framework for prevention. Funding: Bill & Melinda Gates Foundation.</p

Global, regional, and national burden of epilepsy, 1990–2021: a systematic analysis for the Global Burden of Disease Study 2021

Background: Epilepsy is one of the most common serious neurological disorders and affects individuals of all ages across the globe. The aim of this study is to provide estimates of the epilepsy burden on the global, regional, and national levels for 1990–2021. Methods: Using well established Global Burden of Diseases, Injuries, and Risk Factors Study (GBD) methodology, we quantified the prevalence of active idiopathic (epilepsy of genetic or unknown origin) and secondary epilepsy (epilepsy due to an underlying abnormality of the brain structure or chemistry), as well as incidence, death, and disability-adjusted life-years (DALYs) by age, sex, and location (globally, 21 GBD regions and seven super-regions, World Bank country income levels, Socio-demographic Index [SDI], and 204 countries) and their trends from 1990 to 2021. Vital registrations and verbal autopsies provided information about deaths, and data on the prevalence and severity of epilepsy, largely came from population representative surveys. All estimates were calculated with 95% uncertainty intervals (UIs). Findings: In 2021, there were 51·7 million (95% UI 44·9–58·9) people with epilepsy (idiopathic and secondary combined) globally, with an age-standardised prevalence of 658 per 100 000 (569–748). Idiopathic epilepsy had an age-standardised prevalence of 307 per 100 000 (235–389) globally, with 24·2 million (18·5–30·7) prevalent cases, and secondary epilepsy had a global age-standardised prevalence of 350 per 100 000 (322–380). In 2021, 0·7% of the population had active epilepsy (0·3% attributed to idiopathic epilepsy and 0·4% to secondary epilepsy), and the age-standardised global prevalence of epilepsy from idiopathic and secondary epilepsy combined increased from 1990 to 2021 by 10·8% (1·1–21·3), mainly due to corresponding changes in secondary epilepsy. However, age-standardised death and DALY rates of idiopathic epilepsy reduced from 1990 to 2021 (decline of 15·8% [8·8–22·8] and 14·5% [4·2–24·2], respectively). There were three-fold to four-fold geographical differences in the burden of active idiopathic epilepsy, with the bulk of the burden residing in low-income to middle-income countries: 82·1% (81·1–83·4) of incident, 80·4% prevalent (79·7–82·7), 84·7% (83·7–85·1) fatal epilepsy, and 87·9% (86·2–89·2) epilepsy DALYs. Interpretation: Although the global trends in idiopathic epilepsy deaths and DALY rates have improved in the preceding decades, in 2021 there were almost 52 million people with active epilepsy (24 million from idiopathic epilepsy and 28 million from secondary epilepsy), with the bulk of the burden (>80%) residing in low-income to middle-income countries. Better treatment and prevention of epilepsy are required, along with further research on risk factors of idiopathic epilepsy, good-quality long-term epilepsy surveillance studies, and exploration of the possible effect of stigma and cultural differences in seeking medical attention for epilepsy. Funding: Bill and Melinda Gates Foundatio