title: Preferences for Prenatal Tests for Cystic Fibrosis: A Discrete Choice Experiment to Compare the Views of Adult Patients, Carriers of Cystic Fibrosis and Health Professionals.
abstract: As new technologies enable the development of non-invasive prenatal diagnosis (NIPD) for cystic fibrosis (CF), research examining stakeholder views is essential for the preparation of implementation strategies. Here, we compare the views of potential service users with those of health professionals who provide counselling for prenatal tests. A questionnaire incorporating a discrete choice experiment examined preferences for key attributes of NIPD and explored views on NIPD for CF. Adult patients (n = 92) and carriers of CF (n = 50) were recruited from one children's and one adult NHS specialist CF centre. Health professionals (n = 70) were recruited via an e-mail invitation to relevant professional bodies. The key attribute affecting service user testing preferences was no miscarriage risk, while for health professionals, accuracy and early testing were important. The uptake of NIPD by service users was predicted to be high and includes couples that would currently decline invasive testing. Many service users (47%) and health professionals (55.2%) thought the availability of NIPD for CF would increase the pressure to undergo prenatal testing. Most service users (68.5%) thought NIPD for CF should be offered to all pregnant women, whereas more health professionals (68.2%) thought NIPD should be reserved for known carrier couples. The implications for clinical practice are discussed.
authors.affiliation: Clinical and Molecular Genetics, Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3BH, UK. melissa.hill@ucl.ac.uk.
authors.forename: Melissa
authors.initials: M
authors.lastname: Hill
authors.affiliation: Department of Respiratory Paediatrics, Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3JH, UK. ranjan.suri@gosh.nhs.uk.
authors.forename: Ranjan
authors.initials: R
authors.lastname: Suri
authors.affiliation: West Midlands Adult Cystic Fibrosis Centre, Heart of England NHS Foundation Trust, Birmingham B9 5SS, UK. edward.nash@heartofengland.nhs.uk.
authors.forename: Edward F
authors.initials: EF
authors.lastname: Nash
authors.affiliation: Research Department of Applied Health Research, University College London, London WC1H 0AJ, UK. steve.morris@ucl.ac.uk.
authors.forename: Stephen
authors.initials: S
authors.lastname: Morris
authors.affiliation: Clinical and Molecular Genetics, Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3BH, UK. l.chitty@ucl.ac.uk.|Fetal Medicine Unit, University College London Hospitals NHS Foundation Trust, London WC1E 6DB, UK. l.chitty@ucl.ac.uk.
authors.forename: Lyn S
authors.initials: LS
authors.lastname: Chitty
keywords: cystic fibrosis; discrete choice experiment; non-invasive prenatal diagnosis (NIPD)