Trisomy 13, home health-care and multidisciplinary approach: Case report / Trissomia 13, atendimento domiciliar e abordagem multidisciplinar: relato de caso

ABSTRACT Objective: To recognize and address Patau's syndrome, despite its rarity and associated low life expectancy, through the presentation of a case study of a 2-year-old patient receiving Home Care services. Case description: We present a female patient who defied the odds with a prolonged survival, possible due to Home Care. She was delivered via cesarean section at 31 weeks + 4 days due to restricted uterine growth. The mother, aged 36, had received proper prenatal care and was in good health. The diagnosis of Patau's syndrome was confirmed through karyotyping after birth. Despite the severe clinical nature of the case, the patient, now with two years old, receives specialized home-based care, supported by a tracheostomy and gastrostomy. A dedicated 24-hour nursing technician ensures continuous monitoring, and the patient benefits from regular medical check-ups, physiotherapy five times a week, weekly speech therapy sessions, monthly consultations with a nutritionist, and ongoing psychological support for her family members. Comments: This multidisciplinary approach has resulted in a slight motor response, highlighting the positive impact of comprehensive care on her overall well-being. The existence of a robust support network for families facing similar challenges is crucial, and a multidisciplinary care can effectively prevent complications associated with this impactful syndrome.

RESUMO Objetivo: Reconhecer e abordar a síndrome de Patau, apesar de sua raridade e da baixa expectativa de vida associada, por meio da apresentação de um estudo de caso de uma paciente de dois anos que recebe cuidados em casa por intermédio de serviços de home care. Descrição do caso: Apresentamos uma paciente do sexo feminino que desafiou as probabilidades, com sobrevivência prolongada devida, possivelmente, ao home care. Ela nasceu por cesariana, com 31 semanas + 4 dias, em razão da restrição do crescimento uterino. A mãe, de 36 anos, recebeu cuidados pré-natais adequados e gozava de boa saúde. O diagnóstico da síndrome de Patau foi confirmado por meio de cariótipo após o nascimento. Apesar da gravidade clínica do caso, a paciente, hoje com dois anos, recebe atendimento domiciliar especializado, apoiado por traqueostomia e gastrostomia. Um técnico de enfermagem dedicado 24 horas garante acompanhamento contínuo, e a paciente beneficia-se de check-ups médicos regulares, fisioterapia cinco vezes por semana, sessões semanais de fonoaudiologia, consultas mensais com nutricionista e apoio psicológico contínuo aos familiares. Comentários: Esta abordagem multidisciplinar resultou em melhora motora discreta, destacando o impacto positivo do cuidado integral no seu bem-estar geral. A existência de uma rede robusta de apoio às famílias que enfrentam desafios semelhantes é crucial, e um cuidado multidisciplinar pode prevenir eficazmente as complicações associadas a esta impactante síndrome.

Using normalisation process theory (NPT) to explore implementation of the maternal perinatal death surveillance and response (MPDSR) policy in Uganda: a reflection.

BACKGROUND: The implementation of the maternal perinatal death surveillance and response (MPDSR) policy is among the envisaged strategies to reduce the high global burden of maternal and perinatal mortality and morbidity. However, implementation of this policy across various contexts is inconsistent. Theoretically informed approaches to process evaluation can support assessment the implementation of policy interventions such as MPDSR, particularly in understanding what the actors involved actually do. In this article, we reflect on how the normalisation process theory (NPT) was used to explore implementation of the MPDSR policy in Uganda. NPT is a sociological theory concerned with the social organisation of the work (implementation) of making practices routine elements of everyday life (embedding) and of sustaining embedded practices in their social contexts (integration). METHODS: This qualitative multiple case study conducted across eight districts in Uganda and among 10 health facilities (cases) representing four out of the seven levels of the Uganda health care system. NPT was utilised in several ways including informing the study design, structuring the data collection tools (semi-structured interview guides), providing an organising framework for analysis, interpreting and reporting of study findings as well as making recommendations. Study participants were purposely selected to reflect the range of actors involved in the policy implementation process. This included direct care providers located at each of the cases, the Ministry of Health and from agencies and professional associations. Data were collected using semi-structured, in-depth interviews and were inductively and deductively analysed using NPT constructs and subconstructs. RESULTS AND CONCLUSION: NPT served useful for process evaluation, particularly in identifying factors that contribute to variations in policy implementation. Considering the NPT focus on the agency of people involved in implementation, additional efforts are required to understand how recipients of the policy intervention influence how the intervention becomes embedded within the various contexts.

Developing personas to inform the design of digital interventions for perinatal mental health.

Objectives: Digital interventions are increasingly in demand to address mental health concerns, with significant potential to reach populations that disproportionately face barriers to accessing mental health care. Challenges with user engagement, however, persist. The goal of this study was to develop user personas to inform the development of a digital mental health intervention (DMHI) for a perinatal population. Materials and Methods: We used participatory User-Centered Design (UCD) methods to generate and validate personas (ie, representative profiles of potential users). We applied this methodology to a case example of an Anxiety Sensitivity Intervention. Phases included (1) Characteristic identification, (2) Persona generation, (3) Persona consolidation, (4) Persona validation, and (5) Persona refinement. Advisory Council members with lived expertise of perinatal mental health conditions generated 6 personas. We used cluster analysis and qualitative analysis to consolidate personas. We used participant interviews with perinatal individuals experiencing depression or anxiety and economic marginalization (n = 12) to qualitatively validate and refine these personas. Results: We identified 4 user personas with potentially unique design needs that we characterized as being "Resilient," "Lonely," "Overwhelmed," and "Aware." Discussion: Personas generated through this process had distinct characteristics and design implications including the need to prioritize (1) content personalization, (2) additional content describing support options and resources (eg, doulas, midwives), (3) careful consideration of the type of information provided by users, and (4) transparent options for information and data sharing. Conclusion: DMHIs will need to be adapted for relevance for a perinatal population. The personas we developed are suggestive of the need for design considerations specific to distinct potential user groups within this population.

Web-Based Intervention (SunnysideFlex) to Promote Resilience to Posttraumatic Stress Disorder Symptoms During Pregnancy: Development and Pilot Study.

BACKGROUND: Approximately 4% to 8% of pregnant individuals meet the criteria for current posttraumatic stress disorder (PTSD), a known risk factor for a multitude of adverse maternal and child health outcomes. However, PTSD is rarely detected or treated in obstetric settings. Moreover, available prenatal PTSD treatments require in-person services that are often inaccessible due to barriers to care. Thus, web-based interventions offer great potential in extending PTSD treatment to high-risk pregnant individuals by providing affordable, accessible care. However, there are currently no web-based interventions designed specifically for the treatment of PTSD symptoms during pregnancy. OBJECTIVE: This study aims to develop and pilot a 6-week, web-based, cognitive behavioral therapy intervention for PTSD, SunnysideFlex, in a sample of 10 pregnant women with current probable PTSD. Consistent with established guidelines for developing and testing novel interventions, the focus of this pilot study was to evaluate the initial feasibility and acceptability of the SunnysideFlex intervention and preintervention to postintervention changes in PTSD and depression symptoms. This approach will allow for early refinement and optimization of the SunnysideFlex intervention to increase the odds of success in a larger-scale clinical trial. METHODS: The SunnysideFlex intervention adapted an existing web-based platform for postpartum depression, Sunnyside for Moms, to include revised, trauma-focused content. A total of 10 pregnant women in weeks 16 to 28 of their pregnancy who reported lifetime interpersonal trauma exposure (ie, sexual or physical assault) and with current probable PTSD (scores ≥33 per the PTSD checklist for DSM-5) were enrolled in the SunnysideFlex intervention. Assessments took place at baseline and 6 weeks (postintervention). RESULTS: All participants were retained through the postintervention assessment period. Engagement was high; participants on average accessed 90% of their lessons, logged on to the platform at least weekly, and reported a generally positive user experience. Moreover, 80% (8/10) of participants demonstrated clinically meaningful reductions in PTSD symptoms from baseline to postintervention, and 50% (5/10) of participants no longer screened positive for probable PTSD at postintervention. Most (6/10, 60%) of the participants maintained subclinical depression symptoms from baseline to postintervention. CONCLUSIONS: Findings from this small pilot study indicate that SunnysideFlex may be a feasible and acceptable mechanism for delivering PTSD intervention to high-risk, trauma-exposed pregnant women who might otherwise not have opportunities for services. Larger-scale trials of the intervention are necessary to better understand the impact of SunnysideFlex on PTSD symptoms during pregnancy and the postpartum period.

Perinatal death in the Nordic countries in relation to gestational age: The impact of registration practice.

INTRODUCTION: Although perinatal death rates in the Nordic countries are among the lowest in the world, the risk of perinatal death is unevenly distributed across the Nordic countries, despite similarity in health care systems and pregnancy care. Birth registration practices across countries may explain some of the differences. We investigated differences in national registration of perinatal mortality within the Nordic countries and its impact on perinatal mortality according to gestational age. MATERIAL AND METHODS: Each country provided information by answering a questionnaire about registration of perinatal deaths. Furthermore, we collected aggregated count data based on Medical Birth Registries (MBR) from all Nordic countries in 2000 to 2021. Perinatal mortality was defined as stillbirth or neonatal death occurring within first 7 days of life. Data were grouped into six groups by gestational age (GA): extremely preterm (>28 + 0 weeks, subdivided into 22 + 0-23 + 6 and 24 + 0-27 + 6), very preterm (GA 28 + 0-31 + 6), moderate preterm (GA 32 + 0-33 + 6), late preterm (GA 34 + 0-36 + 6), term (GA 37 + 0-40 + 6) and late term or post-term birth (GA ≥ 41 + 0). Perinatal mortality rate and risk ratio with 95% confidence intervals were calculated per country for each gestational age group. For Denmark, separate analyses included and excluded induced abortions. RESULTS: The study included 6 343 805 live births, 22 727 stillbirths and 8932 liveborn infants who died within the first week of life after GA 22 + 0. Further 25 057 births were included with GA < 22 + 0, unknown GA and as a result of induced abortion. Overall, perinatal mortality rates decreased during year 2000-2021 in all Nordic countries. After exclusion of induced abortions, the perinatal mortality rate was similar in the five Nordic countries. The perinatal mortality rate for extremely preterm born infants was highest in Denmark, whereas the highest rate among infants born late term/post-term was in Sweden. CONCLUSIONS: The perinatal mortality rate in the Nordic countries is still decreasing, especially in the group of extremely preterm born infants. This study supports the need for further standardization of birth registration practices to ensure the validity of international comparisons.

Effectiveness of a package of community-based mental healthcare services to address perinatal mental disorders in Bangladesh: A cluster-randomized controlled trial.

BACKGROUND: Perinatal mental disorders of women have an impact on their pregnancy and their child's brain development across low and middle-income countries. However, to address this issue, there are no specific guidelines for community-level service providers in Bangladesh. Therefore, we aimed to develop a community-based mental healthcare (CBMHC) service package and test its effectiveness in reducing depression, anxiety, and stress among mothers during the perinatal period. METHODS: A cluster-randomized controlled trial (cRCT) was applied to test the CBMHC package in 2017 and 2018. It was provided to one group of mothers along with routine maternal care while another group received only routine maternal care. Paired sample t-test was applied to assess mean changes at baseline and endline in the Depression, Anxiety, and Stress Scales-21 (DASS-21) and EuroQol-5 Dimension and 3 Level (EQ5D3L) scales. A linear mixed-effects model was used to assess the relationship between the DASS-21 score and EQ5D3L. RESULTS: 1215 participants were enrolled, including 605 in the intervention group and 610 in the control group. Measures of depression, anxiety, and stress were significantly decreased in both groups. Reduction in the levels of stress, as measured by changes in the stress score, were significantly greater in the intervention than in the control group (diff: 1.2, 95 % CI: 0.1, 2.2). The EQ5D3L index improved significantly, 0.02 units more at endline in the intervention group than in the control group (diff: 0.02, 95 % CI: 0.007, 0.03). The levels of mobility, usual activities, pain or discomfort, depression, and anxiety improved by 1.4 %, 7.6 %, 4.4 %, 2.6 %, and 0.4 % more, respectively, in the intervention group compared to the control groups. These improvements were statistically significant. The DASS-21 score was negatively and significantly correlated with both the EQ-5D3L index and the Visual Analogue Scale (VAS) score for the intervention group as well as for the usual care group, indicating that EQ5D3L improved when common mental disorders decreased. CONCLUSION: Although the improvements were modest, a CBMHC service package was effective in reducing perinatal levels of stress among Bangladeshi rural women. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT03678415.

Growth velocity of fetal sacrococcygeal teratoma as predictor of perinatal morbidity and mortality: multicenter study.

OBJECTIVE: To identify prenatal predictors of poor perinatal outcome in fetuses with isolated sacrococcygeal teratoma (SCT). METHODS: This was a retrospective study of fetuses with isolated (non-syndromic) SCT managed at one of five pediatric surgery and/or fetal medicine centers between January 2007 and December 2017. The primary outcome was the occurrence of poor perinatal outcome, defined as prenatal death (including termination), or neonatal death or severe compromise (hemorrhagic shock). Data regarding prenatal diagnosis (sonographic features both at referral and at the last ultrasound examination before pregnancy outcome, assessment of SCT growth velocity), perinatal complications and outcome, and neonatal course were analyzed to determine prenatal SCT characteristics associated with adverse perinatal outcome. RESULTS: Fifty-five fetuses were included, diagnosed with isolated SCT at a median gestational age of 22 (interquartile range, 18-23) weeks. There was a poor perinatal outcome in 31% (n = 17) of these cases, including intrauterine fetal demise (4%, n = 2), pregnancy termination (13%, n = 7) and neonatal severe compromise (15%, n = 8), leading to neonatal death in five cases. The overall survival rate after prenatal diagnosis of isolated SCT was 75% (n = 41 of 55). Earlier gestational age at diagnosis (P = 0.02), large tumor volume at referral (P < 0.001), presence of one or more hemodynamic complications (P = 0.02), fast tumor growth velocity (P < 0.001) and high tumor grade (highest tumor grade ≥ 3) (P = 0.049) were associated with poor perinatal outcome on univariate analysis. On stepwise logistic regression analysis, tumor growth velocity was the only remaining independent factor associated with poor perinatal outcome (odds ratio (OR) (per 1-mm/week increase), 1.48 (95% CI, 1.22-1.97), P = 0.001). The best predictive cut-off of tumor growth velocity for poor perinatal outcome was 7 mm/week (OR, 25.7 (95% CI, 5.6-191.3), P < 0.001), yielding a sensitivity of 88% and a specificity of 77%. CONCLUSIONS: Approximately 30% of fetuses with a diagnosis of isolated SCT have poor perinatal outcome. Tumor growth velocity ≥ 7 mm/week appears to be an appropriate discriminative cut-off for poor perinatal outcome. These results could help to inform prenatal management and counseling of parents with an affected pregnancy. © 2024 The Author(s). Ultrasound in Obstetrics & Gynecology published by John Wiley & Sons Ltd on behalf of International Society of Ultrasound in Obstetrics and Gynecology.

The Long-Term Health Outcomes of People Living with Perinatal Human Immunodeficiency Virus: A Scoping Review.

Since the first reported cases of perinatally acquired human immunodeficiency virus (HIV) in 1982, a generation born with HIV has reached adulthood. The authors conducted a scoping review of PubMed and Google Scholar for articles published between January 2000 and June 2023 to assess the long-term, multisystem health outcomes of this population. Long-term health outcomes studied in this population pertain to the effects of perinatal HIV (PHIV) infection and life-long antiretroviral therapy on the endocrine, reproductive, psychosocial, neurobehavioral, immunologic, and cardiovascular systems. Holistic health of all body systems should be considered in the long-term care of people with PHIV.

Neurocognitive Outcomes Following Perinatal Human Immunodeficiency Virus Infection.

Perinatally acquired human immunodeficiency virus (HIV) has the potential to affect neurodevelopment and long-term cognitive and behavioral outcomes. Early, consistent viral suppression through antiretroviral therapy is a priority for protection of neurodevelopment. Monitoring of neurodevelopment and cognitive functioning, referral for appropriate interventions, caregiver/family support, and assessment of mental health, socioeconomic, and environmental risks are important to optimize health and well-being. Support for medication and health care adherence may be necessary to sustain best outcomes.

Penta Network: State-of-the-Art Research in Pediatric Human Immunodeficiency Virus.

The Penta Network has made significant strides in pediatric human immunodeficiency virus (HIV) research, initially focusing on clinical trials for children in Europe, before expanding globally to countries with high HIV prevalence. Key contributions include the ODYSSEY trial, which established dolutegravir as a superior treatment for children and the Early-treated Perinatally HIV-infected Individuals: Improving Children's Actual Life with Novel Immunotherapeutic Strategies consortium, aimed at developing strategies for HIV remission. The ongoing empirical and thrive projects address advanced HIV disease, particularly severe pneumonia and postdischarge mortality in children. Going beyond clinical trials, the Penta Network also plays a key role in bringing stakeholders and industry together to achieve better antiretroviral formulations for children.

Research Toward a Cure for Perinatal HIV.

In virtually all people living with HIV-1 (PLWH), including children, HIV-1 integrates and becomes latent in CD4+ T cells, forming a latent HIV-1 reservoir that current antiretroviral drugs and immune surveillance mechanisms cannot target. This latent infection in CD4+ T cells renders HIV-1 infection lifelong and incurable. Consequently, there is intense research focused on identifying therapeutic strategies to reduce and control the latent reservoir, aiming to avert a lifetime of antiretroviral therapy for PLWH. This review discusses the global efforts for children and adolescents living with HIV-1.

Culturally responsive, trauma-informed, continuity of care(r) toolkits: A scoping review.

BACKGROUND: Models of care that are culturally responsive, trauma-informed and provide continuity of care(r), are important components of care for Aboriginal and Torres Strait Islander parents during the broad perinatal period (pregnancy to 2 years after birth; first 1000 days). Many health services do aim to incorporate these concepts in care provision, but often focus on only one. AIM: To identify practical toolkits that guide implementation of culturally responsive care, trauma-informed care, or continuity of care(r) in the perinatal period, and map the key elements. METHODS: A scoping review was conducted. Relevant databases and grey literature were searched to identify toolkits that guided implementation of any one of the aforementioned concepts in the perinatal period. Toolkit context, principles, core components and processes were extracted and synthesised. FINDINGS: Thirteen toolkits, from both Indigenous and non-Indigenous contexts, met the inclusion criteria. Six related to culturally responsive care, nine to trauma-informed care, and eight to continuity of care(r), with some overlap. Key principles included continuity of carer, collaboration, woman (or family) centred care, safety and holistic care. Individualised care, team work, having a safe service environment and continuity of care/r were highlighted as core components. Key processes related to planning, implementation, monitoring and evaluation, and sustainability. DISCUSSION: There are no available resources that support holistic implementation of all three concepts of culturally responsive, trauma-informed continuity of care(r), spanning the first 1000 days, for Aboriginal and Torres Strait Islander families. A synthesised toolkit of key principles, core components and key processes would assist implementation of this. STATEMENT OF SIGNIFICANCE: Problem: Aboriginal and Torres Strait Islander families experience health inequalities and poorer perinatal outcomes due to a legacy of colonisation and ongoing discrimination. WHAT IS ALREADY KNOWN: Culturally responsive care, trauma-informed care and continuity of care(r) are elements of perinatal care shown to improve outcomes and experiences. WHAT THIS PAPER ADDS: This review synthesises key aspects of culturally responsive, trauma-informed and continuity of care(r) models. It highlights the lack of resources to support services implementing models pertaining to these three concepts across the full First 1000 days, for Aboriginal and Torres Strait Islander families.

Investigating postural control as a predictor of low back and pelvic girdle pain during and after pregnancy.

BACKGROUND: Falls are common during pregnancy, posing risks to maternal and fetal health. Pregnant individuals also commonly experience low back and/or pelvic girdle pain. Other populations with pain, such as older adults with back pain demonstrate increased fall risk. This study assessed the relationship between standing balance control characteristics during single leg stance and low back/pelvic girdle pain scores during and after pregnancy with eyes open and closed. We hypothesized that standing balance control characteristics of smaller sway and sway velocity would be related to greater low back/pelvic girdle pain during the third trimester. METHODS: During the second trimester, third trimester, and postpartum nineteen individuals performed single leg stance on a force platform with eyes open and closed and completed the Quebec Back Pain Disability Scale. Stepwise multiple linear regressions were used to investigate the variance of Quebec Back Pain Disability Scale scores that could be explained by postural control variables for each time point and condition. FINDINGS: During the third trimester, decreased total sway and anterior/posterior sway range with eyes closed were significantly associated with higher low back/pelvic girdle pain disability scores (P = 0.005, R2 = 0.480). No significant relationships were found during the second trimester or postpartum nor for eyes open conditions. INTERPRETATION: This study suggests a potential association between low back/pelvic girdle pain and postural control during pregnancy. Pregnant individuals with lumbopelvic pain may demonstrate postural stability deficits, particularly without visual input. Balance assessments and interventions should be considered during routine care for pregnant individuals, especially for those with pain.

Research on Perinatal Human Immunodeficiency Virus in Asia: Data on Treatment Outcomes and Emerging Co-Morbidities from the TREAT Asia Network.

Although new pediatric human immunodeficiency virus (HIV) infections have declined in the Asia-Pacific region, coverage of interventions to prevent vertical HIV transmission remains inconsistent. The TREAT Asia pediatric HIV cohort includes data from ∼7700 children and adolescents with HIV (90% perinatally acquired) who have been under care at 18 centers in six Asian countries. Research on their HIV treatment outcomes has been complemented by studies on coinfections and comorbidities. These studies have shown that greater attention is needed to support and sustain clinical and social outcomes as children with perinatal HIV age into adulthood and transition to adult HIV care.

Behavioral Health Trends Among Perinatal North Carolina Medicaid Beneficiaries.

Untreated behavioral health conditions among the perinatal population are associated with high mortality and morbidity. We examined trends of behavioral health conditions and treatment received by perinatal Medicaid beneficiaries and described the characteristics of providers treat-ing these beneficiaries from 2017 to 2022. Results indicated that 24.4% of beneficiaries had a behav-ioral health diagnosis, 13.8% received a psycho-tropic prescription, and 7.1% received a behavioral health service.

Proteinuria is associated with worse outcomes in babies born to mothers with preeclampsia: A retrospective cohort study at a tertiary referral hospital in Brazil.

To evaluate whether the presence of proteinuria, although no longer mandatory in the revised diagnostic criteria, results in worse maternal and fetal outcomes in preeclampsia (PE). A retrospective cohort study was conducted, analyzing data from pregnant patients diagnosed with PE between January 2015 and December 2019 at a tertiary care center in Brazil. Ethical approval was obtained, and the patient records were reviewed to assess maternal and perinatal outcomes based on the revised diagnostic criteria by the College of Obstetricians and Gynecologists, focusing on the presence or absence of proteinuria. The study included 816 pregnant patients with PE, of whom 685 (83.9%) were diagnosed based on proteinuria. The revised criteria, which include indicators of organ damage, identified an additional 131 cases (16.4%). Analysis showed no significant differences in maternal outcomes between proteinuria and non-proteinuria groups, including intensive care unit (ICU) admission, acute pulmonary edema (APE), HELLP syndrome, eclampsia, or C-section rates. However, babies born to mothers with proteinuria PE experienced worse outcomes, including fetal growth restriction, low birth weight, ICU admission, and higher rates of preterm birth. Relative risk analysis demonstrated a high risk of babies being born with low birth weight, ICU admission, and being born preterm and very preterm in cases where proteinuria was present in mothers with PE. The presence of proteinuria is associated with significantly worse outcomes in babies born to mothers with preeclampsia, while no significant differences were observed in maternal outcomes.

Leveraging an equity birth plan as a communication tool to address health equity and improve health outcomes in black birthing people.

BACKGROUND: Black birthing people in the United States are disproportionately impacted by maternal mortality and more frequently report physical and verbal mistreatment during intrapartum care. Birth plans for prenatal and postpartum care promote autonomy and agency but have not been used as tools to address disparities in perinatal care. METHODS: We reviewed the literature on the use of birth plans and communication in the pregnancy care setting. We provide an expert analysis and a recommendation for a comprehensive birth plan that incorporates patient preferences and individualizes patient risks as a communication tool. RESULTS: In this expert opinion we outline how an equity birth plan can address social determinants of health, promote respectful communication and prioritize attention to patient narratives. This instrument can be used to address systemic problems that result in health inequities on a community, provider and institutional level. CONCLUSIONS: A birth plan with attention to equity serves as a new paradigm for care which can empower patients and reduce racial inequities in perinatal and postpartum outcomes.

Perinatal deaths in twin and singleton infants in Ireland: A comparison of characteristics and causes.

INTRODUCTION: Twin pregnancies are associated with significantly higher perinatal mortality (PM) rates compared to singletons, primarily due to complications like fetal growth restriction, preterm birth, and congenital anomalies. This study aimed to compare the characteristics associated with PM in twin pregnancies and compare maternal and obstetric factors and cause of death among twins and singletons in the Republic of Ireland. MATERIALS AND METHODS: Data spanning 2011 to 2022 from the National Perinatal Epidemiology Centre's annual perinatal mortality clinical audit included 4494 perinatal deaths. Maternal characteristics, antenatal care factors and cause of death were analysed with relative risk calculated using national Hospital In-Patient Enquiry data. Pearson's chi-squared tests studied the difference between mortality in twins and singletons. RESULTS: Twins accounted for 10.4% of all perinatal deaths, despite representing only 3.6% of total births. The PM rate for twins was 17.3 per 1000 births, 3.1 times higher than for singletons. Early neonatal deaths (ENNDs) were more frequent in twins (54.2%), while stillbirths predominated among singletons (68.6%). Younger maternal age and lower BMI were associated with higher PM risks in twins. A considerable proportion of twin deaths with major congenital anomalies or birth before 28 weeks gestation occurred in non-tertiary hospitals, suggesting limitations in referral pathways to centres with appropriate neonatal expertise. CONCLUSION: Twin pregnancies pose a higher risk of perinatal mortality, particularly among younger mothers and preterm births. The findings highlight the need for updated guidelines that prioritise early risk assessment, targeted interventions, and improved referral systems.

Pathways to specialist community perinatal mental health services: a two-site longitudinal retrospective service evaluation.

Background: During pregnancy and the postpartum period, women's mental health can deteriorate quickly. Timely and easy access to services is critically important; however, little is known about the pathways women take to access services. Previous research has shown that women from ethnic minority groups in the United Kingdom experience more access issues compared to the White British women. Aim: To describe pathways taken to specialist community perinatal mental health services and explore how they vary across services and ethnic groups. Methods: This is a two-site, longitudinal retrospective service evaluation conducted in Birmingham and London during 6 months (1 July-31 December 2019). Electronic records of 228 women were accessed and data were extracted on help-seeking behaviour, referral process and the type of pathway (i.e. simple or complex). Data were collected using the adapted World Health Organization encounter form and analysed using uni- and multivariable analyses. Results: The median time from the start of perinatal mental illness to contact with perinatal mental health services was 20 weeks. The majority of patients accessed perinatal mental health services through primary care (69%) and their pathway was simple, that is they saw one service before perinatal mental health services (63%). The simple pathway was used as a proxy for accessible services. In Birmingham, compared to London, more referrals came from secondary care, more women were experiencing current deterioration in mental health, and more women followed a complex pathway. Despite differences between ethnic groups regarding type of pathway and duration of patient journey, there was no evidence of difference when models controlled for confounders such as clinical presentation, general characteristics and location. The service's location was the strongest predictor of the type of pathway and duration of patient journey. Limitations: The heterogeneity among categorised ethnic groups; data extracted from available electronic records and not validated with patient's own accounts of their pathways to care; unanalysed declined referrals; the study was conducted before the COVID-19 pandemic and pathways may be different in the post-COVID-19 period. Conclusion: The study provides important insights into how patients find their way to community perinatal mental health services. It shows that there is a great degree of variability in the time taken to get into these services, and the pathway taken. This variation does not come from different needs of patients or different clinical presentations but rather from service-level factors. Future work: The studied community perinatal mental health services in the United Kingdom operate with a significant degree of variability in the types and characteristics of patient pathways. Future research should explore these issues on the national and international levels. Additionally, future research should explore the reasons for the different pathways taken and the outcomes and risks associated with them. Funding: This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme as award number 17/105/14.

First, we put together individuals from different ethnic groups to study them, but this might hide the differences between each group. Second, we only used information from patients' records, and we did not check with the patients themselves to make sure everything was right. Lastly, we did this study before the COVID-19 pandemic, so the way people get health care might have changed since then. This study is the first to look at how women get to community mental health services for mothers. We found that it takes different amounts of time for women to reach these services, and they follow different paths. This difference does not seem to be because of what the patients need or how unwell they are, but because of how the services work. In the future, we should study what happens and what problems might come from these different ways of getting help.

Sex and Gender Variables in Data Set Creation and Data Cleaning for Inclusive and Accurate Reproductive Health Research and Quality Improvement.

INTRODUCTION: Existing data is often used for reproductive research and quality improvement. Electronic health records (EHRs) with a single data field for sex and gender conflate sex assigned at birth, genotype, gender identity, and the presence of anatomic tissue and organs. This is problematic for inclusion of transgender and gender-diverse populations in research. This article discusses considerations with a single-item sex and gender variable drawn from EHR records and describes an audit to determine variable validity as a criterion for inclusion or exclusion in perinatal research. METHODS: Individuals with a live birth at a large academic medical center from 2010 to 2022 were identified via electronic query, and records with male demographic information were reviewed to validate (1) the patient's date of birth and delivery date in the EHR matched the medical record number, (2) male sex and gender demographic information, and (3) male gender terms in EHR notes. RESULTS: All health records of male birthing individuals (n = 8) had EHR evidence of giving birth within the health system during the timeframe, and the date of birth matched the medical record number of the EHR. All had male gender in the EHR demographic information. Six patients did not have any male gender terms in available EHR notes, only female gender terms. Two records had recent notes using male gender terms. DISCUSSION: Current EHRs may not have reliable data on the gender and sex of gender-diverse individuals. A single sex and gender variable drawn from EHRs should not be used as inclusion or exclusion criteria for health research or quality improvement without additional record review. EHRs can be updated to collect more data on sex, gender identity, and other relevant variables to improve research and quality improvement.