RESUMO
Advances in molecular technologies have the potential to help remedy health inequities through earlier detection and prevention; if, however, their delivery and uptake (and therefore any benefits associated with such testing) are not more carefully considered, there is a very real risk that existing inequities in access and use will be further exacerbated. We argue this risk relates to the way that information and knowledge about the technology is both acquired and shared, or not, between health practitioners and their patients.A healthcare system can be viewed as a complex social network comprising individuals with different worldviews, hierarchies, professional cultures and subcultures and personal beliefs, both for those giving and receiving care. When healthcare practitioners are not perceived as knowledge equals, they would experience informational prejudices, and the result is that knowledge dissemination across and between them would be impeded. The uptake and delivery of a new technology may be inequitable as a result. Patients would also experience informational prejudice when they are viewed as not being able to understand the information that is presented to them, and information may be withheld.Informational prejudices driven by social relations and structures have thus far been underexplored in considering (in)equitable implementation and uptake of new molecular technologies. Every healthcare interaction represents an opportunity for experiencing informational prejudice, and with it the risk of being inappropriately informed for undertaking (or offering) such screening or testing. Making knowledge acquisition and information dissemination, and experiences of informational prejudice, explicit through sociologically framed investigations would extend our understandings of (in)equity, and offer ways to affect network relationships and structures that support equity in delivery and uptake.
Assuntos
Atenção à Saúde , Preconceito , HumanosRESUMO
BACKGROUND: Significant health inequities exist around maternal and infant health for Maori, the indigenous people of Aotearoa New Zealand - and in particular around a premature (preterm) delivery. Maori babies are more likely to be born preterm (8.1%, compared to an overall rate of 7.4%) and they are more likely to have a preterm death. An essential part of redressing these disparities is to examine the clinical care pathway and outcomes associated with preterm deliveries. This paper describes a protocol utilising national and local health collections to enable such a study. DESIGN: This is a retrospective cohort study comprising 5 years data pertaining to preterm deliveries from 2010 to 2014. These data are generated from linked national administrative and local health information collections to explore a range of neonatal outcomes and infant mortality in relation to the antenatal care pathway and known risk factors for preterm delivery. This study is being conducted within a Kaupapa Maori paradigm that dismisses victim blaming and seeks to intervene at structural levels to improve the health and wellbeing of Maori whanau (family). SIGNIFICANCE OF THE STUDY: Our data-linkage methodology optimises the utility of New Zealand health collections to address a significant health issue. Our findings will fill the information gaps around the burden of preterm delivery by quantifying the incidence of preterm delivery and adverse neonatal and infant outcomes in Aotearoa New Zealand. It will explore access to evidenced based care including use of steroids before birth, and appropriate place of delivery. The results from this study will inform maternity care services to improve management of preterm deliveries - both locally and internationally. This in turn will improve the preterm sequela by reducing the long-term health burden and health inequities.
Assuntos
Procedimentos Clínicos , Recém-Nascido Prematuro , Havaiano Nativo ou Outro Ilhéu do Pacífico , Nascimento Prematuro/etnologia , Displasia Broncopulmonar/etnologia , Feminino , Humanos , Incidência , Lactente , Mortalidade Infantil/etnologia , Recém-Nascido , Recém-Nascido Pequeno para a Idade Gestacional , Masculino , Nova Zelândia/epidemiologia , Cuidado Pré-Natal , Estudos Retrospectivos , Fatores de RiscoRESUMO
BACKGROUND: Non-invasive prenatal testing (NIPT) is a relatively new screen for congenital conditions - specifically, common fetal aneuploidies including Down Syndrome. The test is based on isolating freely circulating fragments of fetal-placental DNA that is present in the mother's blood. NIPT has a superior clinical performance compared to current screening, and has been available privately in Aotearoa New Zealand for the last 4 years. MAIN ISSUE: The proposed implementation of NIPT as a publicly funded service may widen the inequity in access to optional antenatal screening that already exists in this country. CONCLUSION: This paper discusses precautions that can be taken at the health system, organisation, and personnel levels to ensure that access to NIPT is equitable, that services are culturally responsive, and women's informed choice is promoted and protected. The adoption of NIPT into publicly funded services is an example of how genetic screening is becoming mainstreamed into health services; as such our approach may also have relevance around the introduction of other genetic and genomic screening initiatives.
Assuntos
Síndrome de Down/diagnóstico , Testes Genéticos/economia , Implementação de Plano de Saúde , Acessibilidade aos Serviços de Saúde/economia , Diagnóstico Pré-Natal/economia , Feminino , Financiamento Governamental , Testes Genéticos/métodos , Humanos , Nova Zelândia , Gravidez , Diagnóstico Pré-Natal/métodosRESUMO
BACKGROUND: Non-invasive prenatal testing (NIPT) has been available in Aotearoa New Zealand (NZ) for approximately four years. It is likely to be introduced into the publicly funded prenatal screening service. AIM: To explore obstetrician use and views of NIPT, with consideration to its implementation into screening services for Down syndrome and other conditions. METHODS: An anonymous online survey combining Likert scales and free text was designed to assess current practice, knowledge, ethical considerations, counselling and views toward public funding of NIPT. The survey was distributed through the New Zealand members of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists (n = 418) and responses collected over a two-month period in 2016. RESULTS: There were 134/418 (32.1%) respondents. Current knowledge influenced decisions to offer NIPT (70.3%, 85/121). Confidence in offering NIPT was: 'not at all' (0.8%, 1/128); 'a little' (7.03%, 9/128), 'somewhat' (16.4%, 21/128), 'quite' (40.6%, 52/128) and 'very' (35.2%, 45/128). A total of 83.5% (101/121) stated NIPT should be publicly funded and NIPT capability developed within NZ (89.1%, 106/119). More information and support on the provision of NIPT was called for. CONCLUSION: There was strong support for public funding of NIPT, and for NIPT capability to be developed in NZ. The call for more training, education and support needs to be actioned in order to facilitate the introduction of NIPT into screening services.
Assuntos
Atitude do Pessoal de Saúde , Transtornos Cromossômicos/diagnóstico , Conhecimentos, Atitudes e Prática em Saúde , Obstetrícia , Diagnóstico Pré-Natal/métodos , Feminino , Financiamento Governamental , Testes Hematológicos , Humanos , Nova Zelândia , Gravidez , Diagnóstico Pré-Natal/economia , Diagnóstico Pré-Natal/ética , Autoeficácia , Inquéritos e QuestionáriosRESUMO
Injury remains one of the leading causes of years of life lost worldwide. In 2015, the New Zealand Major Trauma Registry was developed to provide a comprehen-sive data registry within New Zealand for looking at the outcomes and determinants of major trauma. It has published yearly major trauma reports since its founding.
Assuntos
Havaiano Nativo ou Outro Ilhéu do Pacífico/estatística & dados numéricos , Admissão do Paciente/estatística & dados numéricos , Ferimentos e Lesões/etnologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Feminino , Hospitais , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Nova Zelândia/epidemiologia , Sistema de Registros , Estudos Retrospectivos , Ferimentos e Lesões/mortalidade , Adulto JovemRESUMO
Non-invasive prenatal testing (NIPT) is a new screen for fetal chromosomal abnormalities. It is a screening test based on technology that involves the analysis of feto-placental DNA that is present in maternal blood. This DNA is then analysed for abnormalities of specific chromosomes (eg 13, 18, 21, X, Y). NIPT has a much higher screening capability for chromosomal abnormalities than current combined first trimester screening, with ~99% sensitivity for trisomy 21 (Down syndrome) and at least a 10-fold higher positive predictive value. The low false-positive rate (1-3%) is one of the most advertised advantages of NIPT. In practice, this could lead to a significant reduction in the number of false-positive tests and the need for invasive diagnostic procedures. NIPT is now suitable for singleton and twin pregnancies and can be performed from ~10 weeks in a pregnancy. NIPT is not currently publicly funded in most countries. However, the increasing availability of NIPT commercially will likely lead to an increase in demand for this as a screening option. Given the high numbers of women who visit a general practitioner (GP) in their first trimester, GPs are well-placed to also offer NIPT as a screening option. A GP's role in facilitating access to this service will likely be crucial in ensuring equity in access to this technology, and it is important to ensure that they are well supported to do so.