Assessing the quality and value of metabolic chart data for capturing core outcomes for pediatric medium-chain acyl-CoA dehydrogenase (MCAD) deficiency.

Background: Generating rigorous evidence to inform care for rare diseases requires reliable, sustainable, and longitudinal measurement of priority outcomes. Having developed a core outcome set for pediatric medium-chain acyl-CoA dehydrogenase (MCAD) deficiency, we aimed to assess the feasibility of prospective measurement of these core outcomes during routine metabolic clinic visits.

Methods: We used existing cohort data abstracted from charts of 124 children diagnosed with MCAD deficiency who participated in a Canadian study which collected data from birth to a maximum of 11 years of age to investigate the frequency of clinic visits and quality of metabolic chart data for selected outcomes.

Development of a Maternal Equity Safety Bundle to Eliminate Racial Inequities in Massachusetts.

Objective: The PNQIN (Perinatal-Neonatal Quality Improvement Network of Massachusetts) sought to adapt the Reduction of Peripartum Racial and Ethnic Disparities Conceptual Framework and Maternal Safety Consensus Bundle by selecting and defining measures to create a bundle to address maternal health inequities in Massachusetts. This study describes the process of developing consensus-based measures to implement the PNQIN Maternal Equity Bundle across Massachusetts hospitals participating in the Alliance for Innovation on Maternal Health Initiative.

Methods: Our team used a mixed-methods approach to create the PNQIN Maternal Equity Bundle through consensus including a literature review, expert interviews, and a modified Delphi process to compile, define, and select measures to drive maternal equity-focused action.

Risk of Severe Maternal Morbidity in Birthing People With Opioid Use Disorder.

Introduction: We examined severe maternal morbidity (SMM) among birthing people with opioid use disorder (OUD) and evaluated the extent to which differences in SMM exist by race and ethnicity.

Methods: We performed a retrospective cohort study using hospital discharge data for all Massachusetts births between 2016 and 2020. SMM rates for all SMM indicators, except transfusions, were computed for those diagnosed with and without OUD.

Decreasing Decision-to-Incision Times for Unscheduled, Urgent Cesarean Deliveries.

Objective: To standardize the preprocedure process for urgent, unscheduled cesarean deliveries to decrease the time from decision to skin incision to improve maternal and fetal outcomes.

Methods: In our quality-improvement project, we selected indications that require urgent cesarean deliveries, created a standard algorithm, then implemented a multidisciplinary process intended to reduce decision-to-incision time. This initiative was conducted from May 2019 to May 2021, with a preimplementation period from May 2019 to November 2019 (n=199), implementation period from December 2019 to September 2020 (n=283), and postimplementation period from October 2020 to May 2021 (n=160).

Defining 'obstetric haemorrhage': Blood loss volume and severe morbidity.

Aims And Objectives: Our goal is to describe the association between total quantitative blood loss (QBL) and risk of obstetric haemorrhage-related morbidity (OBH-M) to assess the utility of the current definition of obstetric haemorrhage (OBH).

Methods: This was a retrospective cohort study completed of all patients who had a live delivery at the only urban safety-net hospital over a 2-year period from 2018 to 2019. We categorized deliveries into 10 equally sized deciles based on QBL and compared the proportion with OBH-M in each.

Development and testing of a decision aid to achieve shared decision-making for routine labor induction.

Background: This quality improvement project aimed to create a decision aid for labor induction in healthy pregnancies at or beyond 39 weeks that met the needs of pregnant people least likely to experience shared decision-making and to identify and test implementation strategies to support its use in prenatal care.

Methods: We used quality improvement and qualitative methods to develop, test, and refine a patient decision aid. The decision aid was tested in three languages by providers across obstetrics, family medicine, and midwifery practices at a tertiary care hospital and two community health centers.

Intrapartum Risk Factors and Prediction of Obstetric Hemorrhage-Related Morbidity.

Objective: The aim of this study was to assess whether inclusion of intrapartum risk factors improves our obstetric hemorrhage risk stratification tool in predicting obstetric hemorrhage, transfusion, and related severe morbidity.

Study Design: This is a retrospective cohort study using all live deliveries at a single institution over a 2-year period ( = 5,332). Obstetric hemorrhage risk factors, hemorrhage burden, and severe maternal morbidity index outcomes were assessed through chart abstraction.

Implementation of a pharmacological prophylaxis bundle to prevent obstetric-associated venous thromboembolism.

Purpose: Venous thromboembolism (VTE) accounts for a significant proportion of pregnancy-related mortality. In response to a series of VTEs at our institution and in accordance with mounting medical evidence for increased assessment, we implemented a universal, standardized obstetric VTE risk assessment process during antepartum and postpartum admissions and corresponding pharmacological thromboprophylaxis, which extends into the postdischarge period to prevent pregnancy-associated VTE in our urban, safety-net population.

Summary: This quality improvement (QI) project used the Institute for Healthcare Improvement's Model for Improvement.

Identification of cerebrospinal fluid and serum metabolomic biomarkers in first episode psychosis patients.

Psychotic disorders are currently diagnosed by examining the patient's mental state and medical history. Identifying reliable diagnostic, monitoring, predictive, or prognostic biomarkers would be useful in clinical settings and help to understand the pathophysiology of schizophrenia. Here, we performed an untargeted metabolomics analysis using ultra-high pressure liquid chromatography coupled with time-of-flight mass spectroscopy on cerebrospinal fluid (CSF) and serum samples of 25 patients at their first-episode psychosis (FEP) manifestation (baseline) and after 18 months (follow-up).

Stakeholder engagement and participation in the design, delivery, and dissemination of the ostomy self-management telehealth (OSMT) program.

Purpose: Stakeholder engagement is increasingly integrated into clinical research processes. We conducted a mixed methods analysis to describe stakeholders' (peer ostomates, ostomy nurses, telehealth engineers) perceptions of their engagement and participation in a multisite, randomized trial of a telehealth-delivered curriculum for cancer survivors with ostomies.

Methods: Stakeholder notes were analyzed using narrative analysis.

The association of hourly second-stage documentation with cesarean delivery and maternal blood loss.

Purpose Of The Article: Cesarean rates and maternal morbidity increase with the duration of the second stage of labor. We studied the effect of hourly evaluation and documentation during the second stage of labor on maternal and fetal outcomes.

Materials And Methods: We performed a retrospective cohort study of all women who delivered at our urban, tertiary care hospital and underwent a second stage of greater than 60 min between 1 June 2016 and 31 May 2019.

Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.

Introduction: Children with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This study aims to comprehensively understand the healthcare experiences of children with IMDs and their families across Canada.

Labour after caesarean counselling documentation: a quality improvement intervention on labour and delivery.

Background: Most women who have had previous caesareans are eligible to have labour after caesarean (LAC), but only 11.9% do so. Studies show the majority of women have already decided about future mode of birth (FMOB) before a subsequent pregnancy.

Assessing Multisensory Sensitivity Across Scales: Using the Resulting Core Factors to Create the Multisensory Amplification Scale.

Multisensory sensitivity (MSS), observed in some chronic pain patients, may reflect a generalized central nervous system sensitivity. While several surveys measure aspects of MSS, there remains no gold standard. We explored the underlying constructs of 4 MSS-related surveys (80 items in total) using factor analyses using REDCap surveys (N = 614, 58.

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey.

Background And Objective: Children with inherited metabolic diseases often require complex and highly specialized care. Patient and family-centered care can improve health outcomes that are important to families. This study aimed to examine experiences of family caregivers (parents/guardians) of children diagnosed with inherited metabolic diseases with healthcare to inform strategies to improve those experiences.

Core Outcome Sets for Medium-Chain Acyl-CoA Dehydrogenase Deficiency and Phenylketonuria.

Background: Evidence to guide treatment of pediatric medium-chain acyl-coenzyme A dehydrogenase (MCAD) deficiency and phenylketonuria (PKU) is fragmented because of large variability in outcome selection and measurement. Our goal was to develop core outcome sets (COSs) for these diseases to facilitate meaningful future evidence generation and enhance the capacity to compare and synthesize findings across studies.

Methods: Parents and/or caregivers, health professionals, and health policy advisors completed a Delphi survey and participated in a consensus workshop to select core outcomes from candidate lists of outcomes for MCAD deficiency and PKU.

Renal function outcomes and kidney biopsy features of living kidney donors with hypertension.

Background: The medium- to long-term outcomes of living kidney donors with hypertension compared to normotensive donors are not well understood, especially with the recent changes in hypertension guidelines.

Methods: We studied a cohort of 950 living kidney donors using different definitions of hypertension based on either ≥140/90 or ≥130/80 mmHg thresholds and based on either office or ambulatory blood pressure readings. Microstructural features on kidney biopsy at the time of donation were compared using different definitions of hypertension.

Implementation of a Universal Screening Process for Substance Use in Pregnancy.

Objective: To implement a standardized universal substance use screening process in an outpatient prenatal clinic at an urban tertiary care hospital.

Methods: Using a quality-improvement framework that involved process modeling, stakeholder analyses, and plan-do-study-act cycles, we implemented universal substance use screening for prenatal patients using a modified 5Ps screening tool (Parents, Peers, Partner, Past, Present). Implementation included an operational workflow based on the SBIRT (Screening, Brief Intervention, Referral to Treatment) model.

Predictors of pharmacologic therapy for neonatal opioid withdrawal syndrome: a retrospective analysis of a statewide database.

Objective: Identify factors associated with the need for pharmacologic therapy (PT) among opioid exposed newborn (OENs).

Study Design: Retrospective analysis of a statewide database of OENs from 2017 through 2019. Multivariable mixed-effects logistic regression modeled the association of maternal characteristics, infant characteristics, and family engagement practices on the receipt of PT.

Racial and Ethnic Disparities in Maternal and Infant Outcomes Among Opioid-Exposed Mother-Infant Dyads in Massachusetts (2017-2019).

To examine the extent to which differences in medication for opioid use disorder (MOUD) in pregnancy and infant neonatal opioid withdrawal syndrome (NOWS) outcomes are associated with maternal race/ethnicity. We performed a secondary analysis of a statewide quality improvement database of opioid-exposed deliveries from January 2017 to April 2019 from 24 hospitals in Massachusetts. We used multivariable mixed-effects logistic regression to model the association between maternal race/ethnicity (non-Hispanic White, non-Hispanic Black, or Hispanic) and prenatal receipt of MOUD, NOWS severity, early intervention referral, and biological parental custody at discharge.

Obstetric Hemorrhage Risk Associated with Novel COVID-19 Diagnosis from a Single-Institution Cohort in the United States.

Objective: The study aimed to compare the quantitative blood loss (QBL) and hemorrhage-related outcomes of pregnant women with and without a coronavirus disease 2019 (COVID-19) diagnosis.

Study Design: This retrospective cohort study of all live deliveries at Boston Medical Center between April 1, 2020 and July 22, 2020 compares the outcomes of pregnant women with a laboratory-confirmed COVID-19 positive diagnosis and pregnant women without COVID-19. The primary outcomes are QBL and obstetric hemorrhage.

Maternal perceptions of the experience of attempted labor induction and medically elective inductions: analysis of survey results from listening to mothers in California.

Background: The rate of induction of labor in the U.S. has risen from 9.

Communications Between Pregnant Women and Maternity Care Clinicians.

This survey study assesses patients’ self-reported communication experiences with their maternity care clinicians and examines the association of these experiences with women’s reports of feeling pressure to have interventions during delivery.

Outcomes in pediatric studies of medium-chain acyl-coA dehydrogenase (MCAD) deficiency and phenylketonuria (PKU): a review.

Background: Inherited metabolic diseases (IMDs) are a group of individually rare single-gene diseases. For many IMDs, there is a paucity of high-quality evidence that evaluates the effectiveness of clinical interventions. Clinical effectiveness trials of IMD interventions could be supported through the development of core outcome sets (COSs), a recommended minimum set of standardized, high-quality outcomes and associated outcome measurement instruments to be incorporated by all trials in an area of study.