Structured Framework for Multidisciplinary Parent Counseling and Medical Interventions for Fetuses and Infants with Trisomy 13 or Trisomy 18.

OBJECTIVE: Trisomy 13 (T13) and 18 (T18) are aneuploidies associated with multiple structural congenital anomalies and high rates of fetal demise and neonatal mortality. Historically, patients with either one of these diagnoses have been treated similarly with exclusive comfort care rather than invasive interventions or intensive care, despite a wide phenotypic variation and substantial variations in survival length. However, surgical interventions have been on the rise in this population in recent years without clearly elucidated selection criterion. Our objective was to create a standardized approach to counseling expectant persons and parents of newborns with T13/T18 in order to provide collaborative and consistent counseling and thoughtful approach to interventions such as surgery. STUDY DESIGN: This article describes our process and presents our resulting clinical care guideline. RESULTS: We formed a multi- and interdisciplinary committee. We used published literature when available and otherwise expert opinion to develop an approach to care featuring individualized assessment of the patient to estimate qualitative mortality risk and potential to benefit from intensive care and/or surgeries centered within an ethical framework. CONCLUSION: Through multidisciplinary collaboration, we successfully created a patient-centered approach for counseling families facing a diagnosis of T13/T18. Other institutions may use our approach as a model for developing their own standardized approach. KEY POINTS: · Trisomy 13 and trisomy 18 are associated with high but variable morbidity and mortality.. · Research on which patients are most likely to benefit from surgery is lacking.. · We present our institution's framework to counsel families with fetal/neonatal T13/T18..

Measuring antenatal counseling skill with a milestone-based assessment tool: a validation study.

BACKGROUND: Antenatal counseling for parents in the setting of expected preterm delivery is an important component of pediatric training. However, healthcare professionals receive a variable amount and quality of formal training. This study evaluated and discussed validity of a practical tool to assess antenatal counseling skills and provide evaluative feedback: the Antenatal Counseling Milestones Scale (ACoMS). METHODS: Experts in antenatal counseling developed an anchored milestone-based tool to evaluate observable skills. Study participants with a range of antenatal counseling skills were recruited to participate in simulation of counseling sessions in person or via video with standardized patient actors presenting with preterm labor at 23 weeks' gestation. Two faculty observers scored each session independently using the ACoMS. Participants completed an ACoMS self-assessment, demographic, and feedback survey. Validity was measured with weighted kappas for inter-rater agreement, Kruskal-Wallis and Dunn's tests for milestone levels between degrees of expertise in counseling, and cronbach's alpha for item consistency. RESULTS: Forty-two participants completed observed counseling sessions. Of the 17 items included in the tool, 15 items were statistically significant with scores scaling with level of training. A majority of elements had fair-moderate agreement between raters, and there was high internal consistency amongst all items. CONCLUSION: This study demonstrates that the internal structure of the ACoMS rubric has greater than fair inter-rater reliability and high internal consistency amongst items. Content validity is supported by the scale's ability to discern level of training. Application of the ACoMS to clinical encounters is needed to determine utility in clinical practice.

Depression and socioeconomic stressors in expectant parents with fetal congenital anomalies.

OBJECTIVE: Congenital anomalies are increasingly diagnosed before birth, which may lead to psychological distress in expectant parents. While the presence of significant symptoms of depression and stress in these parents is established, understanding their context within parents' other life stressors has not been fully investigated. We sought to characterize the socioeconomic profile and depression symptoms of expectant parents in a quaternary care academic hospital's fetal care clinic. METHODS: This prospective observational study enrolled pregnant persons and their partners in our fetal care clinic. The Edinburgh Postpartum Depression Scale (EPDS), Tool Assessing Patient Stress (TAPS), and a sociodemographic survey were utilized to assess parent psychological distress and socioeconomic stressors. Results were analyzed by the severity of the fetal anomaly. EPDS was repeated at two weeks postpartum. RESULTS: 21.7% of pregnant subjects and 25.0% of co-parents had a positive screen on the EPDS at enrollment during their pregnancy. Mothers' EPDS scores correlated with the severity of the fetal anomaly. Many parents reported socioeconomic stressors including: living remotely from the medical center, low household income, food insecurity, unemployment, or other employment concerns, and difficulty affording living expenses. Most also reported factors that can mitigate psychological distress including social support and participation in a religion or faith. CONCLUSIONS: Expectant parents with fetal anomalies should be screened for depression as well as social and economic risk factors that place them and their infants at higher risk for poor health outcomes. Further work is needed to determine the optimum interventions for addressing their depression symptoms and reducing socioeconomic stressors.