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Factors that impact on women's decision-making around prenatal genomic tests: An international discrete choice survey.
Buchanan, James; Hill, Melissa; Vass, Caroline M; Hammond, Jennifer; Riedijk, Sam; Klapwijk, Jasmijn E; Harding, Eleanor; Lou, Stina; Vogel, Ida; Hui, Lisa; Ingvoldstad-Malmgren, Charlotta; Soller, Maria Johansson; Ormond, Kelly E; Choolani, Mahesh; Zheng, Qian; Chitty, Lyn S; Lewis, Celine.
Afiliação
  • Buchanan J; Nuffield Department of Population Health, Health Economics Research Centre, University of Oxford, Oxford, UK.
  • Hill M; National Institute for Health Research Oxford Biomedical Research Centre, Oxford, UK.
  • Vass CM; North Thames Genomic Laboratory Hub, Great Ormond Street Hospital, London, UK.
  • Hammond J; Genetic and Genomic Medicine, UCL Great Ormond Street Institute of Child Health, London, UK.
  • Riedijk S; Manchester Centre for Health Economics, The University of Manchester, Manchester, UK.
  • Klapwijk JE; RTI Health Solutions, Manchester, UK.
  • Harding E; North Thames Genomic Laboratory Hub, Great Ormond Street Hospital, London, UK.
  • Lou S; Genetic and Genomic Medicine, UCL Great Ormond Street Institute of Child Health, London, UK.
  • Vogel I; Department of Clinical Genetics, Erasmus MC, Rotterdam, The Netherlands.
  • Hui L; Department of Clinical Genetics, Erasmus MC, Rotterdam, The Netherlands.
  • Ingvoldstad-Malmgren C; BSc Paediatrics and Child Health, The UCL Great Ormond Street Institute of Child Health, London, UK.
  • Soller MJ; Center for Fetal Diagnostics, Department of Clinical Medicine, Aarhus University, Aarhus, Denmark.
  • Ormond KE; DEFACTUM - Public Health & Health Services Research, Central Denmark Region, Aarhus, Denmark.
  • Choolani M; Center for Fetal Diagnostics, Department of Clinical Medicine, Aarhus University, Aarhus, Denmark.
  • Zheng Q; Department of Clinical Genetics, Aarhus University Hospital, Aarhus, Denmark.
  • Chitty LS; Reproductive Epidemiology Group, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
  • Lewis C; Department of Perinatal Medicine, Mercy Hospital for Women, Heidelberg, Victoria, Australia.
Prenat Diagn ; 42(7): 934-946, 2022 06.
Article em En | MEDLINE | ID: mdl-35476801
ABSTRACT

OBJECTIVE:

We conducted a survey-based discrete-choice experiment (DCE) to understand the test features that drive women's preferences for prenatal genomic testing, and explore variation across countries.

METHODS:

Five test attributes were identified as being important for decision-making through a literature review, qualitative interviews and quantitative scoring exercise. Twelve scenarios were constructed in which respondents choose between two invasive tests or no test. Women from eight countries who delivered a baby in the previous 24 months completed a DCE presenting these scenarios. Choices were modeled using conditional logit regression analysis.

RESULTS:

Surveys from 1239 women (Australia n = 178; China n = 179; Denmark n = 88; Netherlands n = 177; Singapore n = 90; Sweden n = 178; UK n = 174; USA n = 175) were analyzed. The key attribute affecting preferences was a test with the highest diagnostic yield (p < 0.01). Women preferred tests with short turnaround times (p < 0.01), and tests reporting variants of uncertain significance (VUS; p < 0.01) and secondary findings (SFs; p < 0.01). Several country-specific differences were identified, including time to get a result, who explains the result, and the return of VUS and SFs.

CONCLUSION:

Most women want maximum information from prenatal genomic tests, but our findings highlight country-based differences. Global consensus on how to return uncertain results is not necessarily realistic or desirable.
Assuntos

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Comportamento de Escolha / Preferência do Paciente Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research / Systematic_reviews Limite: Female / Humans / Pregnancy Idioma: En Ano de publicação: 2022 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Comportamento de Escolha / Preferência do Paciente Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research / Systematic_reviews Limite: Female / Humans / Pregnancy Idioma: En Ano de publicação: 2022 Tipo de documento: Article