Diagnosis delayed: health profile differences between women with undiagnosed polycystic ovary syndrome and those with a clinical diagnosis by age 35 years

STUDY QUESTION: Are reproductive, metabolic or psychological health profiles of women with clinically diagnosed polycystic ovary syndrome (PCOS) different from those with undiagnosed PCOS? SUMMARY ANSWER: Obtaining a clinical diagnosis of PCOS is strongly linked to the experience of fertility problems, but not clinical depression or poor metabolic health, although these were highly prevalent in women with PCOS irrespective of when they were diagnosed. WHAT IS KNOWN ALREADY: PCOS is an endocrine disorder that is relative common, but heterogeneous in presentation. This may impact on the pathways to diagnosis and timely treatment. STUDY DESIGN, SIZE, DURATION: A cross-sectional analysis of a community-based cohort of 974 women, established retrospectively when women were around 30 years of age. PARTICIPANTS/MATERIALS, SETTING, METHODS: In this cohort of women born in Adelaide, South Australia, half of women who met the Rotterdam criteria for PCOS were previously undiagnosed. We compared women with prior clinical diagnosis of PCOS, those diagnosed through participation in this research, and the remainder in the cohort. Sociodemographic characteristics, reproductive, metabolic and psychological health, including medical conditions and medications were considered. Logistic regression was undertaken to identify independent predictors of prior clinical diagnosis. MAIN RESULTS AND THE ROLE OF CHANCE: There were 56 women with a prior clinical diagnosis of PCOS (5.7%) and a further 64 (6.6%) were undiagnosed until study entry. The great majority of women with a prior diagnosis of PCOS reported having had problems with periods (95%) and excess body hair (63%). Corresponding proportions for women undiagnosed until study participation were slightly lower (81% and 45%, respectively). Although the proportion of women attempting or achieving pregnancy was similar across all groups, those with a prior diagnosis of PCOS were four times more likely to have reported difficulties becoming pregnant than those undiagnosed (odds ratio ¼ 4.05, 95% CI 1.74–9.45) and frequently sought medical assistance. Metabolic problems were higher in both PCOS groups compared to women without PCOS. In both PCOS groups, the prevalence of clinical depression was 50% higher than in those with no PCOS (P ¼ 0.021). LIMITATIONS, REASONS FOR CAUTION: The number of women who were diagnosed with PCOS both prior to and during the study limited statistical power available to detect modest differences between the PCOS groups. Some women in the group classified as not having PCOS may have remained undiagnosed, but any bias from this source would contribute to more conservative findings. WIDER IMPLICATIONS OF THE FINDINGS: Findings reinforce the need for early detection of PCOS symptoms from adolescence, ensuring timely diagnosis and appropriate health care. The high prevalence of depression among clinically diagnosed and undiagnosed women with PCOS suggests this is a feature of the condition and supports recent recommendations in the international PCOS guidelines to screen all women with PCOS for depression and anxiety.Renae C. Fernandez, Vivienne M. Moore, Alice R. Rumbold, Melissa J. Whitrow, Jodie C. Avery, and Michael J. Davie

The impact of interpersonal racism on oral health related quality of life among Indigenous South Australians: a cross-sectional study

Background: Interpersonal racism has had a profound impact on Indigenous populations globally, manifesting as negative experiences and discrimination at an individual, institutional and systemic level. Interpersonal racism has been shown to negatively influence a range of health outcomes but has received limited attention in the context of oral health. The aim of this paper was to examine the effects of experiences of interpersonal racism on oral healthrelated quality of life (OHRQoL) among Indigenous South Australians. Methods: Data were sourced from a large convenience sample of Indigenous South Australian adults between February 2018 and January 2019. Questionnaires were used to collect data on sociodemographic characteristics, cultural values, utilization of dental services, and other related factors. OHRQoL was captured using the Oral Health Impact Profile (OHIP-14) questionnaire. We defined the dependent variable ’poor OHRQoL’ as the presence of one or more OHIP-14 items rated as ‘very often’ or ‘fairly often’. Experiences of racism were recorded using the Measure of Indigenous Racism Experiences instrument. Interpersonal racism was classified into two categories (‘no racism’ vs ‘any racism in ≥ 1 setting’) and three categories (’no racism’, ’low racism’ (experienced in 1–3 settings), and ’high racism’ (experienced in 4–9 settings)). Logistic regression was used to examine associations between interpersonal racism, covariates and OHRQoL, adjusting for potential confounding related to socioeconomic factors and access to dental services. Results: Data were available from 885 participants (88.7% of the total cohort). Overall, 52.1% reported experiencing any interpersonal racism in the previous 12 months, approximately one-third (31.6%) were classified as experiencing low racism, and one-fifth (20.5%) experienced high racism. Poor OHRQoL was reported by half the participants (50.2%). Relative to no experiences of racism in the previous 12 months, those who experienced any racism (≥ 1 setting) were significantly more likely to report poor OHRQoL (Odds Ratio (OR): 1.43; 95% Confidence Interval (CI): 1.08–1.92), after adjusting for age, education level, possession of an income-tested health care card, car ownership, self-reported oral health status, timing of and reason for last dental visit, not going to a dentist because of cost, and having no family support. This was particularly seen among females, where, relative to males, the odds of having poor OHRQoL among females experiencing racism were 1.74 times higher (95% CI: 1.07–2.81). Conclusion: Our findings indicate that the experience of interpersonal racism has a negative impact on OHRQoL among Indigenous Australians. The association persisted after adjusting for potential confounding factors. Identifying this link adds weight to the importance of addressing OHRQoL among South Australian’s Indigenous population by implementing culturally-sensitive strategies to address interpersonal racism.Anna Ali, Alice R. Rumbold, Kostas Kapellas, Zohra S. Lassi, Joanne Hedges and Lisa Jamieso

Use and experiences of galactagogues while breastfeeding among Australian women

Background: Galactagogues are substances thought to increase breast milk production, however evidence to support their efficacy and safety remain limited. We undertook a survey among Australian women to examine patterns of use of galactagogues and perceptions regarding their safety and effectiveness. Methods: An online, cross-sectional survey was distributed between September and December 2019 via national breastfeeding and preterm birth support organisations, and networks of several research institutions in Australia. Women were eligible to participate if they lived in Australia and were currently/previously breastfeeding. The survey included questions about galactagogue use (including duration and timing), side effects and perceived effectiveness (on a scale of 1 [Not at all effective] to 5 [Extremely effective]). Results: Among 1876 respondents, 1120 (60%) reported using one or more galactagogues. Women were 31.5 ± 4.8 years (mean ± standard deviation) at their most recent birth. Sixty-five percent of women were currently breastfeeding at the time of the survey. The most commonly reported galactagogues included lactation cookies (47%), brewer's yeast (32%), fenugreek (22%) and domperidone (19%). The mean duration of use for each galactagogue ranged from 2 to 20 weeks. Approximately 1 in 6 women reported commencing galactagogues within the first week postpartum. Most women reported receiving recommendations to use herbal/dietary galactagogues from the internet (38%) or friends (25%), whereas pharmaceutical galactagogues were most commonly prescribed by General Practitioners (72%). The perceived effectiveness varied greatly across galactagogues. Perceived effectiveness was highest for domperidone (mean rating of 3.3 compared with 2.0 to 3.0 among other galactagogues). Over 23% of domperidone users reported experiencing multiple side effects, compared to an average of 3% of women taking herbal galactagogues. Conclusions: This survey demonstrates that galactagogues use is common in Australia. Further research is needed to generate robust evidence about galactagogues' efficacy and safety to support evidence-based strategies and improve breastfeeding outcomes.Grace M. McBride, Robyn Stevenson, Gabriella Zizzo, Alice R. Rumbold, Lisa H. Ami, Amy K. Keir, Luke E. Grzeskowia

It takes a community to conceive: an analysis of the scope, nature and accuracy of online sources of health information for couples trying to conceive

This study examined the nature and accuracy of information available across online platforms for couples trying to conceive. A consumer simulation-based investigation of English websites and social media (Facebook, Twitter, Instagram) was undertaken using common search terms identified in a pilot study. Claims about fertility and pregnancy health were then extracted from the results and analysed thematically. The accuracy of each claim was assessed independently by six fertility and conception experts, rated on a scale of 1 (not factual) to 4 (highly factual), with scores collated to produce a median rating. Claims with a medianscoreb3 were classified as inaccurate. The use of the terms 'trying to conceive' and '#TTC' were common identifiers on online platforms. Claims were extracted predominantly from websites (n= 89) rather than social media, with Twitter and Instagram comprising commercial elements and Facebook focused on community-based support. Thematic analysis revealed three major themes among the claims across all platforms: conception behaviour and monitoring, lifestyle and exposures, and medical. Fact-checking by the experts revealed that 40% of the information assessed was inaccurate, and that inaccuracies were more likely to be present in the conception behaviour and monitoring advice, the topics most amenable to modification. Since online information is a readily accessible and commonly utilized resource, there is opportunity for improved dissemination of evidence-based material to reach interested couples. Further cross-disciplinary and consumer-based research, such as a user survey, is required to understand how best to provide the 'trying to conceive' community with accurate information.Sophie G.E. Kedzior, Tina Bianco-Miotto, James Breen, Kerrilyn R. Diener, Martin Donnelley, Kylie R. Dunning Megan A.S. Penno, John E. Schjenken, David J. Sharkey, Nicolette A. Hodyl, Tod Fullston, Maria Gardiner, Hannah M. Brown, Alice R. Rumbol

Comparison of different protein concentrations of human milk fortifier for promoting growth and neurological development in preterm infants

BACKGROUND:Human milk alone may provide inadequate amounts of protein to meet the growth requirements of preterm infants because of restrictions in the amount of fluid they can tolerate. It has become common practice to feed preterm infants with breast milk fortified with protein and other nutrients but there is debate about the optimal concentration of protein in commercially available fortifiers. OBJECTIVES:To compare the effects of different protein concentrations in human milk fortifier, fed to preterm infants, on growth and neurodevelopment. SEARCH METHODS:We used the standard search strategy of Cochrane Neonatal to search CENTRAL (2019, Issue 8), Ovid MEDLINE and CINAHL on 15 August 2019. We also searched clinical trials databases and the reference lists of retrieved articles for randomised controlled trials and quasi-randomised trials. SELECTION CRITERIA:We included all published and unpublished randomised, quasi-randomised and cluster-randomised trials comparing two different concentrations of protein in human milk fortifier. We included preterm infants (less than 37 weeks' gestational age). Participants may have been exclusively fed human milk or have been supplemented with formula. The concentration of protein was classified as low (< 1g protein/100 mL expressed breast milk (EBM)), moderate (≥ 1g to < 1.4g protein/100 mL EBM) or high (≥ 1.4g protein/100 mL EBM). We excluded trials that compared two protein concentrations that fell within the same category. DATA COLLECTION AND ANALYSIS:We undertook data collection and analyses using the standard methods of Cochrane Neonatal. Two review authors independently evaluated trials. Primary outcomes included growth, neurodevelopmental outcome and mortality. Data were synthesised using risk ratios (RR), risk differences and mean differences (MD), with 95% confidence intervals (CI). We used the GRADE approach to assess the certainty of the evidence. MAIN RESULTS:We identified nine trials involving 861 infants. There is one trial awaiting classification, and nine ongoing trials. The trials were mostly conducted in infants born < 32 weeks' gestational age or < 1500 g birthweight, or both. All used a fortifier derived from bovine milk. Two trials fed infants exclusively with mother's own milk, three trials gave supplementary feeds with donor human milk and four trials supplemented with preterm infant formula. Overall, trials were small but generally at low or unclear risk of bias. High versus moderate protein concentration of human milk fortifier There was moderate certainty evidence that a high protein concentration likely increased in-hospital weight gain compared to moderate concentration of human milk fortifier (MD 0.66 g/kg/day, 95% CI 0.51 to 0.82; trials = 6, participants = 606). The evidence was very uncertain about the effect of high versus moderate protein concentration on length gain (MD 0.01 cm/week, 95% CI -0.01 to 0.03; trials = 5, participants = 547; very low certainty evidence) and head circumference gain (MD 0.00 cm/week, 95% CI -0.01 to 0.02; trials = 5, participants = 549; very low certainty evidence). Only one trial reported neonatal mortality, with no deaths in either group (participants = 45). Moderate versus low protein concentration of human milk fortifier A moderate versus low protein concentration fortifier may increase weight gain (MD 2.08 g/kg/day, 95% CI 0.38 to 3.77; trials = 2, participants = 176; very low certainty evidence) with little to no effect on head circumference gain (MD 0.13 cm/week, 95% CI 0.00 to 0.26; I² = 85%; trials = 3, participants = 217; very low certainty evidence), but the evidence is very uncertain. There was low certainty evidence that a moderate protein concentration may increase length gain (MD 0.09 cm/week, 95% CI 0.05 to 0.14; trials = 3, participants = 217). Only one trial reported mortality and found no difference between groups (RR 0.48, 95% CI 0.05 to 5.17; participants = 112). No trials reported long term growth or neurodevelopmental outcomes including cerebral palsy and developmental delay. AUTHORS' CONCLUSIONS:Feeding preterm infants with a human milk fortifier containing high amounts of protein (≥ 1.4g/100 mL EBM) compared with a fortifier containing moderate protein concentration (≥ 1 g to < 1.4 g/100 mL EBM) results in small increases in weight gain during the neonatal admission. There may also be small increases in weight and length gain when infants are fed a fortifier containing moderate versus low protein concentration (< 1 g protein/100 mL EBM). The certainty of this evidence is very low to moderate; therefore, results may change when the findings of ongoing studies are available. There is insufficient evidence to assess the impact of protein concentration on adverse effects or long term outcomes such as neurodevelopment. Further trials are needed to determine whether modest increases in weight gain observed with higher protein concentration fortifiers are associated with benefits or harms to long term growth and neurodevelopment.Gao C, Miller J, Collins CT, Rumbold A

'I wish I'd had the option': views about donor human milk among parents with babies born moderate-late preterm

First published: 02 May 2021When enough mother's own milk is not available, the benefits of pasteurised donor human milk (donor milk) are well-established for infants born very preterm (<32 weeks' gestation).1 Infants born moderate-to-late preterm (32–36 weeks' gestation) make up the majority of preterm births and frequently face challenges establishing breastfeeding,2 often necessitating the use of supplementary nutrition in the first weeks of life. While varied, the most common practice in Australia and New Zealand is to give infant formula.3 In other countries, particularly the USA, donor milk is used for some moderate to late preterm and term infants, but little evidence exists to inform care practices in these groups.4 Parental interest is likely one force driving practice change in donor milk use, however, little is known about Australian parents' views about donor milk. We conducted an exploratory survey of Miracle Babies Foundation members, the largest preterm birth support and advocacy group in Australia, who had babies born moderate to late preterm. The Lifeblood Human Research Ethics Committee approved the survey. The survey was advertised via the Miracle Babies Facebook page between January and March 2020. Parents were eligible if they had a baby that was born between 32 + 0 and 36 + 6 weeks' gestation. The survey asked about parents' experiences with feeding their baby and their perspectives on donor milk. Here we share their responses to prompt further discussions about the role of donor milk for moderate to late preterm infants. Overall, 67 parents responded to the survey; of these, more than half (n = 42, 63%) reported that they or their partner had trouble making enough milk for their baby (Table 1). Of those, several (n = 12, 29%) said that they sought human milk from another source, most commonly a friend or family member or a hospital milk bank.Laura D Klein, Amy K Keir, Melinda Cruz, Alice R Rumbol

Association between self-reported periodontitis and high-risk oral human papillomavirus infection among Indigenous South Australians: A cross-sectional study

The incidence of oropharyngeal squamous cell carcinoma (OPSCC) is increasing globally, reflecting an increase in human papillomavirus (HPV)-related lesions. Indigenous populations are disproportionately affected by OPSCCs. Currently, testing for oral HPV is not recommended as a screening tool to permit early detection of OPSCCs due to the high population prevalence of HPV infection. Periodontitis may be a marker of oral HPV infection, but previous research evaluating this association has been inconclusive. Here we report a large population-based study examining the association between high-risk oral HPV infection and periodontitis among Indigenous South Australians. Methods: We utilised a large convenience sample of Indigenous South Australians aged 18+ years recruited between February 2018 and February 2020. Of the original cohort (n = 1011), 748 (73.9%) participants participated in the 12 month follow-up. Detailed information on sociodemographic characteristics, health-related behaviours, and sexual history were collected at enrolment. Saliva samples were collected at 12 months and tested for the presence of oral HPV DNA using the optimized general primer (GP) + PCR system. The primary outcomes were the prevalence of any high-risk oral HPV DNA, and separately, HPV 16 and/or 18. Periodontitis was assessed at follow-up by using validated self-reported periodontitis screening questions. Logistic regression analyses were undertaken to assess the association between self-reported periodontitis and oral HPV infection with adjustment for potential sociodemographic and behavioural confounders, with estimates presented as odds ratios (OR) and 95% confidence interval (CI). Results: Data on 673 participants (89.9% of the follow-up cohort) were available. Participants ranged in age from 18 to 80 (mean age 42.2, SD 14.7) and 31.5% were male. Overall, 115 (17.1%) participants had self-reported periodontitis, 40 (5.9%) had any high-risk oral HPV and 14 (2.1%) had HPV 16 and/or 18. Any high-risk HPV was detected among seven (17.5%) participants and HPV 16 and/or 18 was detected in three (21.4%) who self-reported periodontitis. In the regression analyses no significant association was found between self-reported periodontitis and high-risk oral HPV (adjusted OR: 1.10; 95% CI: 0.45–2.70) or HPV 16 and/ or 18 (adjusted OR: 1.27; 95% CI: 0.32–5.03). Conclusion: This study did not find any association between self-reported periodontitis and high-risk oral HPV among Indigenous South Australians. Further targeted studies with standardized clinical measures of periodontal disease are needed to clarify the link between high-risk oral HPV and periodontal disease. If confirmed this would add further weight to the importance of recommendations about the utility of periodontitis screening to identify individuals at risk of carrying high-risk oral HPV, who may benefit from more intensive screening and ongoing monitoring.Anna Ali, Alice R. Rumbold, Kostas Kapellas, Zohra S. Lassi, Joanne Hedges, Lisa Jamieso

Knowledge of Galactagogue Use During Breastfeeding in Australia: A Cross Sectional Online Survey

First published online: March 3, 2022Background: Galactagogues have been used for centuries to induce, maintain, or increase a mother’s milk supply. Recently, there has been an apparent increase in utilization and promotion of galactagogues, largely in the absence of data regarding their efficacy and safety. However, there is limited contemporary evidence about knowledge of these substances in the community or how and where individuals seek information. Research Aim: To evaluate knowledge about galactagogue use during breastfeeding among birth parents, including recognition of specific substances, perceptions of safety, and common information sources. Method: An online, prospective, cross-sectional survey of Australian birthing parents ( N = 2055) who were currently breastfeeding or had previously breastfed their infants was conducted from September to December 2019. The survey included questions about recognition of galactagogues, perceptions of safety, and information-seeking behaviors. Results: Among participants, 47% ( n = 882) were primiparous and 65% ( n = 1,219) were currently breastfeeding. The most recognized galactagogues included lactation cookies (89%; n = 1,828), brewer's yeast (79%; n = 1,629), fenugreek (74%; n = 1,519), and domperidone (69%; n = 1,420). Respondents cited the internet (52%; n = 1,066), lactation support providers (46%; n = 951), midwives (42%; n = 873), general practitioners (39%; n = 802), and social media (35%; n = 714) as common information sources. Lactation support providers and breastfeeding helplines were commonly rated as helpful; whereas, general practitioners and community pharmacists were often rated as unhelpful. While most participants perceived galactagogues to be safe, herbal or dietary galactagogues were perceived to be safer than pharmaceutical galactagogues. Conclusions: Our Australian community survey of individuals with current or previous breastfeeding experience identified widespread recognition of galactagogue use, with participants reporting a broad range of information-seeking behaviors and generally perceiving galactagogues as being safe to use.Grace McKenzie McBride, Robyn Stevenson, Gabriella Zizzo, Alice R Rumbold, Lisa H Amir, Amy K Keir, Luke Edward Grzeskowia

Addressing stillbirth inequities in Australia: steps towards a better future

Persistent disparities in stillbirth risk and care are present in Australia. Eliminating these disparities is possible with a commitment to enhancing and scaling up models of culturally safe maternity care shown to be effective for Aboriginal and Torres Strait Islander women and those of migrant and refugee backgrounds. Campaigns to improve public awareness of stillbirth also play an important role in reducing stillbirth risk and consequences. To achieve reach and impact in communities at risk, messaging needs to be framed around the social and cultural context of women’s lives. Here we describe important initiatives underway within the Stillbirth Centre of Research Excellence to develop a coordinated national approach to stillbirth prevention and care in communities that bear a disproportionate burden of stillbirth.Alice R. Rumbold, Jane Yelland, Deanna Stuart-Butler, Madeline Forbes, Clemence Due, Frances M.Boyle, Philippa Middleton ... et al