Your browser doesn't support javascript.
loading
Preferences for prenatal diagnosis of sickle-cell disorder: A discrete choice experiment comparing potential service users and health-care providers.
Hill, Melissa; Oteng-Ntim, Eugene; Forya, Frida; Petrou, Mary; Morris, Stephen; Chitty, Lyn S.
Afiliação
  • Hill M; Genetics and Genomic Medicine, UCL Great Ormond Street Institute of Child Health and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
  • Oteng-Ntim E; Directorate of Women's Health, Guy's and St Thomas' Foundation Trust, London, UK.
  • Forya F; King's College London, London, UK.
  • Petrou M; Fetal Medicine Unit, University College London Hospitals NHS Foundation Trust, London, UK.
  • Morris S; Institute of Women's Health, University College London, London, UK.
  • Chitty LS; Institute of Women's Health, University College London, London, UK.
Health Expect ; 20(6): 1289-1295, 2017 12.
Article em En | MEDLINE | ID: mdl-28504327
ABSTRACT

BACKGROUND:

Non-invasive prenatal diagnosis (NIPD) for sickle-cell disorder (SCD) is moving closer to implementation and studies considering stakeholder preferences are required to underpin strategies for offering NIPD in clinical practice.

OBJECTIVE:

Determine service user and provider preferences for key attributes of prenatal diagnostic tests for SCD and examine views on NIPD.

METHOD:

A questionnaire that includes a discrete choice experiment was used to determine the preferences of service users and providers for prenatal tests that varied across three attributes accuracy, time of test and risk of miscarriage.

RESULTS:

Adults who were carriers of SCD or affected with the condition (N=67) were recruited from haemoglobinopathy clinics at two maternity units. Health professionals, predominately midwives, who offer antenatal care (N=62) were recruited from one maternity unit. No miscarriage risk was a key driver of decision making for both service users and providers. Service providers placed greater emphasis on accuracy than service users. Current uptake of invasive tests was 63%, whilst predicted uptake of NIPD was 93.8%. Many service users (55.4%) and providers (52.5%) think pressure to have prenatal testing will increase when NIPD for SCD becomes available.

CONCLUSIONS:

There are clear differences between service users and health professionals' preferences for prenatal tests for sickle-cell disorder. The safety of NIPD is welcomed by parents and uptake is likely to be high. To promote informed choice, pretest counselling should be balanced and not exclusively focused on test safety. Counselling strategies that are sensitive to feelings of pressure to test will be essential.
Assuntos
Palavras-chave

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Diagnóstico Pré-Natal / Pessoal de Saúde / Tomada de Decisões / Anemia Falciforme Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Limite: Adult / Female / Humans / Male / Pregnancy Idioma: En Revista: Health Expect Assunto da revista: PESQUISA EM SERVICOS DE SAUDE / SAUDE PUBLICA Ano de publicação: 2017 Tipo de documento: Article País de afiliação: Reino Unido

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Diagnóstico Pré-Natal / Pessoal de Saúde / Tomada de Decisões / Anemia Falciforme Tipo de estudo: Diagnostic_studies / Prognostic_studies / Qualitative_research Limite: Adult / Female / Humans / Male / Pregnancy Idioma: En Revista: Health Expect Assunto da revista: PESQUISA EM SERVICOS DE SAUDE / SAUDE PUBLICA Ano de publicação: 2017 Tipo de documento: Article País de afiliação: Reino Unido