To analyse demographic trends and decision-making patterns regarding prenatal diagnosis (PND) in couples at risk for hereditary haemoglobinopathies at the Thalassemia and Rare Haematological Disease Centre in Turin over a 40-year period.
Retrospective observational study analysing demographic and clinical data from 1983 to 2023.
Tertiary care genetic service Centre in Orbassano (TO), Northern Italy.
Couples seeking genetic counselling and PND for hereditary haemoglobinopathies. Selection criteria included couples at risk of having children affected by β-thalassaemia major or Sickle Cell Disease (SCD).
Primary outcomes included acceptance rates of PND and pregnancy termination (TOP). Variables analysed included couples’ age at first consultation, age at first PND, birthplace, employment status, specific haemoglobinopathy risk and number of pregnancies.
The analysis identified three main factors influencing PND and TOP decisions: nationality, type of haemoglobinopathy risk and number of previous pregnancies. Age showed no significant correlation with decision-making patterns. The impact of education level and employment status could not be definitively determined due to unavailable or unfit data.
The 40-year analysis of prenatal diagnosis for haemoglobinopathies in Turin shows evolving trends influenced by immigration patterns, improved medical treatments and cultural factors, leading to increased acceptance of affected pregnancies in recent years, particularly after 2015, due to better disease management and comprehensive healthcare support. This comprehensive analysis of our centre’s experience provides valuable insights that can serve as a model for similar institutions worldwide in supporting couples through carrier screening and PND processes.
Burnout, a form of moral suffering, has become more commonplace among health care workers in recent years. Measures of general resilience have been widely used to capture improvement in burnout but lack the ability to capture the anguish that comes with burnout from a moral standpoint. The purpose of this analysis was to understand whether moral resilience is uniquely related to burnout beyond a measure of general resilience in a sample of interprofessional health care workers.
Secondary analysis of cross-sectional survey data.
In total, 702 interprofessional health care workers participated in a cross-sectional survey. Key measures included the Rushton Moral Resilience Scale (RMRS), the Connor-Davidson Resilience Scale (CD-RISC-10), and the Maslach Burnout Inventory-Human Services Survey (MBI-HSS). Hierarchical multiple regression modeling was used to examine the effect of moral resilience (RMRS) in predicting the three dimensions of burnout (MBI-HSS) over and above general resilience (CD-RISC-10).
Moral resilience explained five, six, and 4% of variance for personal accomplishment, depersonalization, and emotional exhaustion, respectively, after accounting for general resilience (CD-RISC-10) and all covariates.
Findings highlight the clear conceptual differences between general and moral resilience and their unique relationship to burnout. Accounting for moral resilience will facilitate an improved multi-level response to moral suffering among health care workers.
Measuring and understanding the differences between general resilience and moral resilience is vital for us to better facilitate the necessary support(s) for health care workers experiencing moral suffering. This will contribute to more sustainable clinical environments, reduced burnout and suffering, and improved patient outcomes.