Shared decision making in the prenatal diagnosis of CAKUT: How are decisions made with uncertain diagnosis?
This questionnaire is part of a study within a PhD project in the EU-funded project called PICKED, or Personalised Medicine in Chronic Kidney Disease (grant agreement No. 101168626). You can find more about it here: https://www.projectpicked.eu/.
This survey has been reviewed, approved and supported by the CAKUT & Ciliopathies Working Group of the European Rare Kidney Disease Reference Network (ERKNet).
The aim of this study is to understand how diagnostic inaccuracy can affect decisions after prenatal diagnosis of CAKUT (e.g., termination of pregnancies, further testing), and specifically how sensitivity or specificity should be prioritised when determining diagnostic accuracy threshold for a prenatal test for CAKUT and who should contribute to this decision.
This questionnaire is only for clinicians who contribute to prenatal decision making after CAKUT diagnosis
(e.g., Obstetrician, Gynaecologist, Maternal-Foetal specialist, Perinatologist, Paediatric nephrologist, Paediatric urologist, Clinical geneticist, Neonatologist, etc.)
This questionnaire aim to understand participant perspectives on:
1. Personal and institutional procedures of prenatal testing for CAKUT and opinions on these procedures;
2. The confidence levels of recommending termination of pregnancy based on different false positive rates.
3. Ideal threshold of prenatal testing, including the trade-off of more specificity/sensitivity for less sensitivity/specificity.
