RESUMO
BACKGROUND: Higher odds of survival have been reported in European infants compared to Indigenous Maori and Pasifika infants with critical congenital heart disease in New Zealand. We therefore aimed to understand how to mitigate this disparity by investigating the parent and healthcare professional experiences' of critical congenital heart disease healthcare in New Zealand. METHODS: A prospective qualitative study utilising semi-structured interviews was conducted on a cohort of purposefully sampled parents and health professionals with experience of critical congenital heart disease healthcare in New Zealand. Parents were recruited after a fetal critical congenital heart disease diagnosis and offered two interviews at least three months apart, whilst multidisciplinary fetal and cardiosurgical health professionals were interviewed once. Interviews were recorded and transcribed verbatim before coding, categorization and qualitative analysis. RESULTS: During 2022 and 2023, 45 people participated in 57 interviews (25 parents: 19 mothers, 6 fathers; Indigenous Maori, n = 5; Pasifika, n = 6; Asian, n = 4; European, n = 10; and 20 healthcare professionals: European n = 17). The three lessons learned from participants were: (1) Minoritized groups experience disparate healthcare quality; (2) healthcare systems are under-resourced to provide equitable support for the differential needs of grieving parents; and (3) healthcare systems could engage minoritized families more optimally in shared decision-making. CONCLUSIONS: According to the experiences of parents and healthcare professionals, persisting inequities in CCHD healthcare quality occur by ethnic group, with the New Zealand healthcare system privileging European families. The concepts from this study could be translated by healthcare leaders, policymakers, and professionals into evidence-based healthcare system improvements to enhance experiences for non-European families more broadly.
Assuntos
Equidade em Saúde , Pessoal de Saúde , Cardiopatias Congênitas , Pais , Pesquisa Qualitativa , Humanos , Nova Zelândia , Cardiopatias Congênitas/terapia , Feminino , Masculino , Pais/psicologia , Estudos Prospectivos , Pessoal de Saúde/psicologia , Adulto , Entrevistas como Assunto , Havaiano Nativo ou Outro Ilhéu do Pacífico/psicologia , Recém-Nascido , Disparidades em Assistência à Saúde/etnologiaRESUMO
AIM: To assess local and individual factors that should be considered in the design of a pulse oximetry screening strategy in New Zealand's midwifery-led maternity setting. METHODS: An intervention study was conducted over 2 years. Three hospitals and four primary maternity units participated in the study. Post-ductal saturation levels were measured on well infants with a gestation of ≥35 weeks. Infant activity and age (hours) at the time of the test were recorded. RESULTS: Screening was performed on 16 644 of 27 172 (61%) eligible infants. The age at which the screening algorithm was initiated varied significantly among centres. The probability of achieving a pass result (saturations ≥95%) in the context of no underlying pathology ranged from .94 for an unsettled infant screened <4 hours of age to .99 (P < .001) when the test was performed after 24 hours on a settled infant. Forty-eight (0.3%) infants failed to reach saturation targets: 37 had significant pathology of which three had cardiac disease. CONCLUSION: Screening practices were influenced by the setting in which it was undertaken. Infant activity and age at the time of testing can influence saturation levels. Screening is associated with the identification of significant non-cardiac pathology.
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Cardiopatias Congênitas/diagnóstico , Tocologia/estatística & dados numéricos , Triagem Neonatal , Oximetria/estatística & dados numéricos , Estudos de Viabilidade , Humanos , Recém-Nascido , Fatores de TempoRESUMO
AIM: Assess the potential additional benefit from pulse oximetry screening in the early detection of critical congenital heart disease in a country with a well-developed antenatal ultrasound screening programme. METHODS: Live-born infants, pregnancy terminations and stillbirths from 20 weeks' gestational age, between 2013 and 2015, with critical cardiac defects defined as primary or secondary targets of pulse oximetry screening were identified. Critical defects were those resulting in the death of a fetus or an infant in the first 28 days after birth, or a defect requiring intervention in the first 28 days. RESULTS: Two hundred and sixty-eight infants and Fetuses were identified. Antenatal detection rates improved from 69% to 77% over the study period. An associated co-morbidity improved antenatal detection rates. Twenty-seven live-born infants were diagnosed after discharge: 15 aortic arch obstruction (AAO); 10 d-loop transposition of the great arteries (d-TGA), and two total anomalous pulmonary venous drainage (TAPVD). Of these, five with AAO, nine with d-TGA and likely both with TAPVD could potentially have been detected with oximetry screening. CONCLUSION: The antenatal detection of critical cardiac anomalies continues to improve in New Zealand. Despite high antenatal detection rates for most lesions, universal postnatal oximetry screening has the potential to improve early detection.
Assuntos
Cardiopatias Congênitas/diagnóstico , Triagem Neonatal , Oximetria/estatística & dados numéricos , Diagnóstico Pré-Natal/estatística & dados numéricos , Cardiopatias Congênitas/mortalidade , Humanos , Recém-Nascido , Nova Zelândia/epidemiologia , Estudos RetrospectivosRESUMO
OBJECTIVE: To establish the impact that timing of diagnosis and place of birth have on neonatal outcomes in those with readily treatable critical congenital heart disease. STUDY DESIGN: This was a population-based study with a complete national cohort of live-born infants with transposition of the great arteries and aortic arch obstruction in New Zealand between 2006 and 2014. Timing of diagnosis, place of birth, survival to surgery, in-hospital events, and neonatal mortality were reviewed. Live births with a gestation of ≥35 weeks and without associated major extracardiac anomalies were included for analysis. RESULTS: A total of 166 live-born infants with transposition of the great arteries and 87 with aortic arch obstruction were included. Antenatal detection increased from 32% in the first 3 years to 47% in the last 3 years (P = .05). During the same period, neonatal mortality decreased from 9% to 1% (P = .02). No deaths occurred after surgical intervention. An antenatal diagnosis was associated with decreased mortality (1/97 [1%] vs 11/156 [7%]; P = .03) and birth outside the surgical center was associated with increased risk of mortality (11/147 [7%] vs 1/106 [1%]; P = .02). Those with an antenatal diagnosis required fewer hours of mechanical ventilation (P = .02) and had shorter durations of hospital stay (P = .05) compared with those diagnosed >48 hours after birth. CONCLUSIONS: The mortality risk for transposition of the great arteries and critical aortic arch obstruction is greatest before cardiac surgery. Improved antenatal detection allowing delivery at a surgical center is associated with reduced mortality.
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Síndromes do Arco Aórtico/mortalidade , Mortalidade Infantil/tendências , Diagnóstico Pré-Natal/estatística & dados numéricos , Transposição dos Grandes Vasos/mortalidade , Síndromes do Arco Aórtico/complicações , Síndromes do Arco Aórtico/diagnóstico , Procedimentos Cirúrgicos Cardíacos/estatística & dados numéricos , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Nova Zelândia , Gravidez , Fatores de Tempo , Transposição dos Grandes Vasos/complicações , Transposição dos Grandes Vasos/diagnósticoRESUMO
OBJECTIVE: Determination of gestational age and/or birth weight at which sacral ossification centers appear. STUDY DESIGN: Radiographs were reviewed of newborns admitted to Auckland City Hospital between January 2008 and December 2010. Infants were divided into weight clusters increasing in 100-g increments from 400 g to 3000 g and 500-g increments thereafter, for a total of 29 weight clusters. Adequate images were available for at least five newborns per cluster. RESULTS: Images of 163 newborns were reviewed. All but six newborns had five sacral ossification centers by 32 weeks' gestation and a birth weight of 1800 g. Five of the six infants had a congenital anomaly and associated growth restriction. CONCLUSIONS: Infants can be expected to have all five sacral ossification centers present by the time they reach a gestational age of 32 weeks and/or a birth weight of 1800 g. Variation from this can be associated with congenital anomalies and growth restriction.
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Osteogênese/fisiologia , Sacro/fisiologia , Coluna Vertebral/diagnóstico por imagem , Peso ao Nascer , Cóccix/fisiologia , Feminino , Idade Gestacional , Humanos , Masculino , Gravidez , Segundo Trimestre da Gravidez/fisiologia , Terceiro Trimestre da Gravidez/fisiologia , Radiografia , UltrassonografiaRESUMO
OBJECTIVES: To better understand the relative influence of fetal and maternal factors in determining the choice-of-care pathway (CCP) and outcome in the fetus with hypoplastic left heart syndrome (HLHS). DESIGN: A retrospective, population-based study of fetuses with HLHS from a national dataset with near-complete case ascertainment from 20 weeks' gestation. Fetal cardiac and non-cardiac factors were recorded from the patient record and maternal factors from the national maternity dataset. The primary endpoint was a prenatal decision for active treatment after birth (intention-to-treat). Factors associated with a delayed diagnosis (≥24 weeks' gestation) were also reviewed. Secondary endpoints included proceeding to surgical treatment, and 30-day postoperative mortality in liveborns with an intention-to-treat. SETTING: New Zealand population-wide. PARTICIPANTS: Fetuses with a prenatal diagnosis of HLHS between 2006 and 2015. RESULTS: Of 105 fetuses, the CCP was intention-to-treat in 43 (41%), and pregnancy termination or comfort care in 62 (59%). Factors associated with intention-to-treat by multivariable analysis included a delay in diagnosis (OR: 7.8, 95% CI: 3.0 to 20.6, p<0.001) and domicile in the maternal fetal medicine (MFM) region with the most widely dispersed population (OR: 5.3, 95% CI: 1.4 to 20.3, p=0.02). Delay in diagnosis was associated with Maori maternal ethnicity compared with European (OR: 12.9, 95% CI: 3.1 to 54, p<0.001) and greater distance from the MFM centre (OR: 3.1, 95% CI: 1.2 to 8.2, p=0.02). In those with a prenatal intention-to-treat, a decision not to proceed to surgery was associated with maternal ethnicity other than European (p=0.005) and the presence of major non-cardiac anomalies (p=0.01). Thirty-day postoperative mortality occurred in 5/32 (16%) and was more frequent when there were major non-cardiac anomalies (p=0.02). CONCLUSIONS: Factors associated with the prenatal CCP relate to healthcare access. Anatomic characteristics impact treatment decisions after birth and early postoperative mortality. The association of ethnicity with delayed prenatal diagnosis and postnatal decision-making suggests systemic inequity and requires further investigation.
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Síndrome do Coração Esquerdo Hipoplásico , Gravidez , Humanos , Feminino , Síndrome do Coração Esquerdo Hipoplásico/cirurgia , Síndrome do Coração Esquerdo Hipoplásico/diagnóstico , Estudos Retrospectivos , Estudos de Coortes , Procedimentos Clínicos , Nova Zelândia/epidemiologia , Feto , Ultrassonografia Pré-NatalRESUMO
The mortality risk for infants with critical congenital heart disease (CCHD) unrecognised at the time of birth is high. Pulse oximetry has been utilised as a screening tool for the detection of these anomalies in the newborn as the majority will have a degree of hypoxaemia. This screening strategy has a moderate sensitivity and excellent specificity for the detection of CCHD, and a low false-positive rate. Respiratory and infective diseases are responsible for a large number of positive test results. The early recognition of these diseases can also improve health outcomes. Different approaches have been taken to introduce screening, ranging from hospital-led initiatives to mandatory state-wide policies. A study conducted in New Zealand demonstrated that sector-led screening initiatives are unlikely to result in equitable outcomes. In this midwifery-led maternity setting a nationwide pulse oximetry screening programme with adequate human and material resources should be introduced.
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Cardiopatias Congênitas/diagnóstico , Hipóxia/diagnóstico , Triagem Neonatal/legislação & jurisprudência , Oximetria/métodos , Doenças Transmissíveis/diagnóstico , Doenças Transmissíveis/epidemiologia , Etnicidade , Reações Falso-Positivas , Feminino , Política de Saúde , Cardiopatias Congênitas/complicações , Cardiopatias Congênitas/epidemiologia , Cardiopatias Congênitas/mortalidade , Humanos , Hipóxia/etiologia , Incidência , Recém-Nascido , Programas de Rastreamento/legislação & jurisprudência , Programas de Rastreamento/normas , Triagem Neonatal/métodos , Nova Zelândia/epidemiologia , Nova Zelândia/etnologia , Oximetria/normas , Gravidez , Doenças Respiratórias/diagnóstico , Doenças Respiratórias/epidemiologia , Sensibilidade e EspecificidadeRESUMO
OBJECTIVE: To understand from health professionals who care for newborns their views on the introduction of pulse oximetry screening for the detection of hypoxaemia in a midwifery-led maternity setting. Although oximetry screening for newborns is internationally accepted, national screening is not yet introduced in New Zealand. In this context, we drew on maternity carers' reflections during a feasibility study of oximetry screening to provide perspectives on barriers and enablers to universal screening. METHODS: Data were generated from nine focus groups during five months of 2018 in two north island regions of New Zealand. Participants' (n = 45) opinions about the use of oximetry screening in newborns were analysed thematically using an inductive approach. FINDINGS: Overall, participants stated pulse oximetry screening was easy to do, non-invasive, and worthwhile. Midwives were reassured by screening that provided evidence of either a healthy baby or a need for urgent review. From participants' reports, we identified three themes: (1) oximetry screening for newborns is reassuring, practical and worthwhile; (2) midwifery services workload expectations and under-resourcing will hinder universal screening, and (3) location of the baby at the time of screening could impede universal access. CONCLUSION AND IMPLICATIONS FOR PRACTICE: Midwives viewed implementing a national pulse oximetry screening programme as sensible but problematic unless resourced and funded appropriately. Policymakers should view the concerns of midwives about human and physical resources as significant and account for the need to resource this screening programme appropriately as a priority before implementation.
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Pessoal de Saúde/psicologia , Tocologia , Triagem Neonatal/economia , Triagem Neonatal/instrumentação , Oximetria/economia , Oximetria/psicologia , Estudos de Viabilidade , Grupos Focais , Humanos , Hipóxia/prevenção & controle , Recém-Nascido , Nova Zelândia/epidemiologia , Carga de TrabalhoRESUMO
OBJECTIVE: To investigate the relationship between ethnicity and health outcomes among fetuses and infants with congenital left heart obstruction (LHO). DESIGN: A retrospective population-based review was conducted of fetuses and infants with LHO including all terminations, stillbirths and live births from 20 weeks' gestation in New Zealand over a 9-year period. Disease incidence and mortality were analysed by ethnicity and by disease type: hypoplastic left heart syndrome (HLHS), aortic arch obstruction (AAO), and aortic valve and supravalvular anomalies (AVSA). RESULTS: Critical LHO was diagnosed in 243 fetuses and newborns. There were 125 with HLHS, 112 with AAO and 6 with isolated AVSA. The incidence of LHO was significantly higher among Europeans (0.59 per 1000) compared with Maori (0.31 per 1000; p<0.001) and Pacific peoples (0.27 per 1000; p=0.002). Terminations were uncommon among Maori and Pacific peoples. Total case fatality was, however, lower in Europeans compared with other ethnicities (42% vs 63%; p=0.002) due to a higher surgical intervention rate and better infant survival. The perinatal and infant mortality rate was 82% for HLHS, 15% for AAO and 2% for AVSA. CONCLUSION: HLHS carries a high perinatal and infant mortality risk. There are ethnic differences in the incidence of and mortality from congenital LHO with differences in mortality rate suggesting inequities may exist in the perinatal management pathway.
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Aborto Terapêutico/estatística & dados numéricos , Síndrome do Coração Esquerdo Hipoplásico/mortalidade , Mortalidade Infantil/tendências , Etnicidade , Morte Fetal , Idade Gestacional , Humanos , Síndrome do Coração Esquerdo Hipoplásico/etnologia , Incidência , Lactente , Recém-Nascido , Nova Zelândia/epidemiologia , Estudos Retrospectivos , Fatores Socioeconômicos , Taxa de SobrevidaRESUMO
OBJECTIVES: The aim of this study was to conduct New Zealand-specific research to inform the design of a pulse oximetry screening strategy that ensures equity of access for the New Zealand maternity population. Equity is an important consideration as the test has the potential to benefit some populations and socioeconomic groups more than others. SETTING: New Zealand has an ethnically diverse population and a midwifery-led maternity service. One quaternary hospital and urban primary birthing unit (Region A), two regional hospitals (Region B) and three regional primary birthing units (Region C) from three Health Boards in New Zealand's North Island participated in a feasibility study of pulse oximetry screening. Home births in these regions were also included. PARTICIPANTS: There were 27 172 infants that satisfied the inclusion criteria; 16 644 (61%) were screened. The following data were collected for all well newborn infants with a gestation age ≥35 weeks: date of birth, ethnicity, type of maternity care provider, deprivation index and screening status (yes/no). The study was conducted over a 2-year period from May 2016 to April 2018. RESULTS: Screening rates improved over time. Infants born in Region B (adjusted OR=0.75; 95% CI 0.67 to 0.83) and C (adjusted OR=0.29; 95% CI 0.27 to 0.32) were less likely to receive screening compared with those born in Region A. There were significant associations between screening rates and deprivation, ethnicity and maternity care provider. Lack of human and material resources prohibited universal access to screening. CONCLUSION: A pulse oximetry screening programme that is sector-led is likely to perpetuate inequity. Screening programmes need to be designed so that resources are distributed in the way most likely to optimise health outcomes for infants born with cardiac anomalies. ETHICS APPROVAL: This study was approved by the Health and Disability Ethics Committees of New Zealand (15/NTA/168).
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Equidade em Saúde , Triagem Neonatal/métodos , Oximetria , Estudos de Viabilidade , Humanos , Recém-Nascido , Centros de Saúde Materno-Infantil , Tocologia , Nova ZelândiaRESUMO
Pulse oximetry screening to detect hypoxaemia in newborn infants was introduced at birthing facilities in New Zealand during a feasibility study determining barriers and enablers to universal screening in a midwifery-led maternity system focused on community values and partnership with, and participation by, consumers. During the 2-year study period, parents of infants who underwent pulse oximetry screening were invited to complete a written survey to investigate consumer satisfaction. Respondents ranked their satisfaction with the test and with information resources on a five-level Likert scale. Additional comments were added in a free text space. Participation was voluntary and anonymous. A total of 657 surveys were included for analysis. Consumers were satisfied with the screening procedure; 94% either agreed or strongly agreed that it is an important health check. Although the quality of information sources was deemed good, a third of participants indicated a wish to obtain more information. Some participants stated that retention of information was an issue, reporting that they were fatigued following the birth. Consumers are receptive to pulse oximetry screening. Sharing information (while considering the receptivity of parents) and engaging the parents of newborn infants are factors that are paramount to the success of newborn screening initiatives.