Native Hawaiian or Other Pacific Islander

夏威夷原住民或其他太平洋岛民
  • 文章类型: Journal Article
    背景:澳大利亚偏远的原住民和托雷斯海峡岛民社区已经为健康商店启动了大胆的政策。基准,数据驱动和促进的“审计和反馈”与行动计划过程,提供了一个潜在的战略,以加强和扩大远程社区商店主管/所有者采用有利于健康的最佳实践。我们的目标是与五个合作伙伴组织共同设计基准模型,并与澳大利亚偏远地区的原住民和托雷斯海峡岛民社区商店测试其有效性。
    方法:研究设计是一项务实的随机对照试验,有同意的合格商店(位于澳大利亚非常偏远的北领地(NT),原住民社区的主要杂货店,并由营养从业者与研究伙伴组织提供服务)。基准模型是由研究证据提供的,专门构建的最佳实践审计和反馈工具,并与合作伙伴组织和社区代表共同设计。干预包括两个完整的基准周期(每年一个,2022/23和2023/24)评估,反馈,行动计划和行动实施。商店评估包括21个证据和行业知情的远程商店健康扶持政策的采纳状态,ii使用专门构建的StoreScout应用程序实施有利于健康的最佳实践,iii使用原住民和托雷斯海峡岛民健康饮食ASAP协议的标准化健康饮食的价格;和,使用销售数据指标的食品采购的健康度。合作伙伴组织反馈报告并与商店共同设计行动计划。控制商店接受评估并继续进行常规零售实践。所有商店都提供每周电子销售数据以评估主要结果,从所有购买的食品和饮料中游离糖(G)到能量(MJ)的变化,基线(2021年7月至12月)与2023年7月至12月。
    结论:我们假设基准干预措施可以改善对健康有利的商店政策和实践的采用,并减少澳大利亚偏远社区商店中不健康食品和饮料的销售。这项针对偏远原住民和托雷斯海峡岛民社区的创新研究可以为更广泛的健康食品零售提供有效的实施策略。
    背景:ACTRN12622000596707,协议版本1。
    BACKGROUND: Aboriginal and Torres Strait Islander communities in remote Australia have initiated bold policies for health-enabling stores. Benchmarking, a data-driven and facilitated \'audit and feedback\' with action planning process, provides a potential strategy to strengthen and scale health-enabling best-practice adoption by remote community store directors/owners. We aim to co-design a benchmarking model with five partner organisations and test its effectiveness with Aboriginal and Torres Strait Islander community stores in remote Australia.
    METHODS: Study design is a pragmatic randomised controlled trial with consenting eligible stores (located in very remote Northern Territory (NT) of Australia, primary grocery store for an Aboriginal community, and serviced by a Nutrition Practitioner with a study partner organisation). The Benchmarking model is informed by research evidence, purpose-built best-practice audit and feedback tools, and co-designed with partner organisation and community representatives. The intervention comprises two full benchmarking cycles (one per year, 2022/23 and 2023/24) of assessment, feedback, action planning and action implementation. Assessment of stores includes i adoption status of 21 evidence-and industry-informed health-enabling policies for remote stores, ii implementation of health-enabling best-practice using a purpose-built Store Scout App, iii price of a standardised healthy diet using the Aboriginal and Torres Strait Islander Healthy Diets ASAP protocol; and, iv healthiness of food purchasing using sales data indicators. Partner organisations feedback reports and co-design action plans with stores. Control stores receive assessments and continue with usual retail practice. All stores provide weekly electronic sales data to assess the primary outcome, change in free sugars (g) to energy (MJ) from all food and drinks purchased, baseline (July-December 2021) vs July-December 2023.
    CONCLUSIONS: We hypothesise that the benchmarking intervention can improve the adoption of health-enabling store policy and practice and reduce sales of unhealthy foods and drinks in remote community stores of Australia. This innovative research with remote Aboriginal and Torres Strait Islander communities can inform effective implementation strategies for healthy food retail more broadly.
    BACKGROUND: ACTRN12622000596707, Protocol version 1.
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  • 文章类型: Journal Article
    背景:COVID-19大流行时期(2020年至2022年)对初级卫生保健服务在全球范围内提供卫生保健的能力提出了挑战并过度扩张。该行业面临着一个高度不确定和动态的时期,包括对新的、未知,致命和高度传染性的感染,各种旅行限制的引入,卫生劳动力短缺,新的政府资助公告和各种限制COVID-19病毒传播的政策,然后接种疫苗和治疗。这项定性研究旨在记录和探讨大流行如何影响偏远和地区原住民和托雷斯海峡岛民社区的初级卫生保健利用和提供。
    方法:对在外部地区的11个土著社区控制健康服务(ACCHS)工作的工作人员进行了半结构化访谈,偏远和非常偏远的澳大利亚。采访被转录,感应编码和主题分析。
    结果:248名外部区域工作人员,在2020年2月至2021年6月期间,采访了偏远和非常偏远的初级卫生保健诊所。参与者报告说,在最初的COVID-19锁定期内,大多数社区的初级卫生保健报告数量有所下降。下降的原因是社区成员担心去诊所,改变初级卫生保健工作人员的工作重点(例如,更加强调防止病毒进入社区和阻止传播)和有限的外联计划。工作人员预测未来各种慢性疾病的急性表现将激增,导致从偏远社区到医院的医疗检索需求增加。在疫苗推广前阶段的信息传播被认为受到社区成员的欢迎,而疫苗推出阶段的信息受到通过社交媒体传播的错误信息的挑战。
    结论:这项研究强调了ACCHS能够适应不断变化的COVID-19战略和政策的服务提供能力。这项研究表明需要向员工提供充足的资金,资源,的空间和适当的信息,使他们能够与他们的社区联系,并继续他们的工作,特别是在大流行带来的额外挑战可能变得更加频繁的时代。虽然PHC在COVID-19期间寻求社区成员的行为与世界各地观察到的趋势一致,这些趋势背后的一些原因是外部区域独有的,偏远和非常偏远的人口。政策制定者将需要适当考虑新制定的政策对在偏远和区域环境中运作的ACCHS的潜在影响,这些环境已经在资源问题和大量慢性病人口中挣扎。
    BACKGROUND: The COVID-19 pandemic period (2020 to 2022) challenged and overstretched the capacity of primary health care services to deliver health care globally. The sector faced a highly uncertain and dynamic period that encompassed anticipation of a new, unknown, lethal and highly transmissible infection, the introduction of various travel restrictions, health workforce shortages, new government funding announcements and various policies to restrict the spread of the COVID-19 virus, then vaccination and treatments. This qualitative study aims to document and explore how the pandemic affected primary health care utilisation and delivery in remote and regional Aboriginal and Torres Strait Islander communities.
    METHODS: Semi-structured interviews were conducted with staff working in 11 Aboriginal Community-Controlled Health Services (ACCHSs) in outer regional, remote and very remote Australia. Interviews were transcribed, inductively coded and thematically analysed.
    RESULTS: 248 staff working in outer regional, remote and very remote primary health care clinics were interviewed between February 2020 and June 2021. Participants reported a decline in numbers of primary health care presentations in most communities during the initial COVID-19 lock down period. The reasons for the decline were attributed to community members apprehension to go to the clinics, change in work priorities of primary health care staff (e.g. more emphasis on preventing the virus entering the communities and stopping the spread) and limited outreach programs. Staff forecasted a future spike in acute presentations of various chronic diseases leading to increased medical retrieval requirements from remote communities to hospital. Information dissemination during the pre-vaccine roll-out stage was perceived to be well received by community members, while vaccine roll-out stage information was challenged by misinformation circulated through social media.
    CONCLUSIONS: The ability of ACCHSs to be able to adapt service delivery in response to the changing COVID-19 strategies and policies are highlighted in this study. The study signifies the need to adequately fund ACCHSs with staff, resources, space and appropriate information to enable them to connect with their communities and continue their work especially in an era where the additional challenges created by pandemics are likely to become more frequent. While the PHC seeking behaviour of community members during the COVID-19 period were aligned to the trends observed across the world, some of the reasons underlying the trends were unique to outer regional, remote and very remote populations. Policy makers will need to give due consideration to the potential effects of newly developed policies on ACCHSs operating in remote and regional contexts that already battle under resourcing issues and high numbers of chronically ill populations.
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  • 文章类型: Journal Article
    背景:治疗糖尿病相关的足部疾病(DFD)通常需要小截肢。众所周知,居住的远程限制了人们获得医疗保健的机会,并且以前与不良结果有关。这项研究的主要目的是研究种族和居住偏远之间的关系,以及通过轻度截肢初次治疗DFD后发生严重截肢和死亡的风险。次要目的是确定严重截肢和轻微截肢治疗DFD后死亡的危险因素。
    方法:这是对昆士兰州一家地区三级医院在2000年至2019年间需要轻微截肢治疗DFD的患者数据的回顾性分析,澳大利亚。收集了基线特征以及居住和种族的偏远性。远程性根据2019年修改的莫纳什模型(MMM)系统进行分类。种族基于土著和托雷斯海峡岛民或非土著人的自我认同。严重截肢的结果,使用Cox比例风险分析检查了重复轻微截肢和死亡.
    结果:共纳入534名参与者,306人(57.3%)居住在大都市或地区中心,农村和偏远社区有228人(42.7%),原住民或托雷斯海峡岛民有144人(27.0%)。在4.0(2.1-7.6)年的中位数(四分位数之间)随访期间,103名参与者(19.3%)有严重截肢,230例(43.1%)重复轻微截肢,250例(46.8%)死亡。居住在农村和偏远地区的参与者(0.97,0.67-1.47;和0.98,0.76-1.26)或原住民或托雷斯海峡岛民(HR1.44,95%CI0.96,2.16和HR0.89,95%CI0.67,1.18)的严重截肢和死亡的风险(风险比[95%CI])没有显着提高。缺血性心脏病(IHD),外周动脉疾病(PAD),骨髓炎和足部溃疡(p<0.001)是严重截肢的独立危险因素.
    结论:小截肢治疗DFD和IHD患者后,大截肢和死亡是常见的,PAD和骨髓炎增加了严重截肢的风险。原住民和托雷斯海峡岛民和偏远地区的居民没有严重截肢的风险。
    BACKGROUND: Minor amputation is commonly needed to treat diabetes-related foot disease (DFD). Remoteness of residence is known to limit access to healthcare and has previously been associated with poor outcomes. The primary aim of this study was to examine the associations between ethnicity and remoteness of residency with the risk of major amputation and death following initial treatment of DFD by minor amputation. A secondary aim was to identify risk factors for major amputation and death following minor amputation to treat DFD.
    METHODS: This was a retrospective analysis of data from patients who required a minor amputation to treat DFD between 2000 and 2019 at a regional tertiary hospital in Queensland, Australia. Baseline characteristics were collected together with remoteness of residence and ethnicity. Remoteness was classified according to the 2019 Modified Monash Model (MMM) system. Ethnicity was based on self-identification as an Aboriginal and Torres Strait Islander or non-Indigenous person. The outcomes of major amputation, repeat minor amputation and death were examined using Cox-proportional hazard analyses.
    RESULTS: A total of 534 participants were included, with 306 (57.3%) residing in metropolitan or regional centres, 228 (42.7%) in rural and remote communities and 144 (27.0%) were Aboriginal or Torres Strait Islander people. During a median (inter quartile range) follow-up of 4.0 (2.1-7.6) years, 103 participants (19.3%) had major amputation, 230 (43.1%) had repeat minor amputation and 250 (46.8%) died. The risks (hazard ratio [95% CI]) of major amputation and death were not significantly higher in participants residing in rural and remote areas (0.97, 0.67-1.47; and 0.98, 0.76-1.26) or in Aboriginal or Torres Strait Islander people (HR 1.44, 95% CI 0.96, 2.16 and HR 0.89, 95% CI 0.67, 1.18). Ischemic heart disease (IHD), peripheral artery disease (PAD), osteomyelitis and foot ulceration (p<0.001 in all instances) were independent risk factors for major amputation.
    CONCLUSIONS: Major amputation and death are common following minor amputation to treat DFD and people with IHD, PAD and osteomyelitis have an increased risk of major amputation. Aboriginal and Torres Strait Islander People and residents of remote areas were not at excess risk of major amputation.
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  • 文章类型: Journal Article
    有限的数据描述了肢端浅色黑色素瘤(ALM)的流行病学和危险因素。在这个回顾性分析中,我们研究了种族和族裔人口中ALM的发病率和死亡率趋势.我们询问了22个监控,流行病学,和西班牙裔ALM病例的最终结果登记册,非西班牙裔亚洲人或太平洋岛民(NHAPI),非西班牙裔黑人(NHB),和从2000年到2020年的非西班牙裔白人(NHW)。估计了年龄调整后的发病率和年度百分比变化(APC)。Kaplan-Meier曲线按种族和种族分层,并与对数秩检验进行比较。Cox比例风险回归模型根据年龄进行了调整,性别,种族,种族,收入,城乡住宅,舞台,和治疗。在4188例具有完整数据的ALM病例中,我们的研究队列包括792名(18.9%)西班牙裔,274(6.5%)NHAPI,336(8.0%)NHB,和2786(66.5%)NHWs。从2000年到2020年,年龄调整后的ALM发病率每年增加2.48%(P<0.0001),这是由西班牙裔美国人的发病率上升(APC2.34%,P=0.001)和NHW(APC2.69%,P<0.0001)。NHB的发病率保持稳定(APC1.15%,P=0.1)和NHAPIs(APC1.12%,P=0.4)。从2000年到2020年,765例(18.3%)患者死于ALM。与NHW相比,西班牙裔,NHAPI,和NHB显著增加了ALM特异性死亡率(所有P<0.0001)。未经调整和调整的原因特异性死亡率模型显示,西班牙裔美国人中ALM特异性死亡率的风险显着升高(风险比[HR]1.46,95%置信区间[CI]1.22-1.75;调整后的风险比[aHR]1.38,95%CI1.14-1.66),NHAPI(HR1.80,95%CI1.41-2.32;aHR1.58,95%CI1.23-2.04),和NHB(HR1.98,95%CI1.59-2.47;aHR2.19,95%CI1.74-2.76)(所有P<0.001)。我们的研究发现,西班牙裔和NHW人群中ALM的发病率上升,种族和族裔人口中ALM特异性死亡率的风险也升高。有必要采取未来的策略来减轻ALM中的健康不平等。
    Limited data describe the epidemiology and risk factors of acral lentiginous melanoma (ALM). In this retrospective analysis, we examined trends in incidence and mortality of ALM among racial and ethnic minoritized populations. We queried 22 Surveillance, Epidemiology, and End Results registries for cases of ALM among Hispanics, non-Hispanic Asians or Pacific Islanders (NHAPIs), non-Hispanic Blacks (NHBs), and non-Hispanic Whites (NHWs) from 2000 through 2020. Age-adjusted incidence and annual percentage changes (APCs) were estimated. Kaplan-Meier curves were stratified by race and ethnicity and compared with log-rank tests. Cox proportional hazard regression models were adjusted for age, sex, race, ethnicity, income, urban-rural residence, stage, and treatment. Of 4188 total cases of ALM with complete data, our study cohort was comprised of 792 (18.9%) Hispanics, 274 (6.5%) NHAPIs, 336 (8.0%) NHBs, and 2786 (66.5%) NHWs. The age-adjusted incidence of ALM increased by 2.48% (P < 0.0001) annually from 2000 to 2020, which was driven by rising rates among Hispanics (APC 2.34%, P = 0.001) and NHWs (APC 2.69%, P < 0.0001). Incidence remained stable among NHBs (APC 1.15%, P = 0.1) and NHAPIs (APC 1.12%, P = 0.4). From 2000 through 2020, 765 (18.3%) patients died from ALM. Compared to NHWs, Hispanics, NHAPIs, and NHBs had significantly increased ALM-specific mortality (all P < 0.0001). Unadjusted and adjusted cause-specific mortality modeling revealed significantly elevated risk of ALM-specific mortality among Hispanics (hazard ratio [HR] 1.46, 95% confidence interval [CI] 1.22-1.75; adjusted hazard ratio [aHR] 1.38, 95% CI 1.14-1.66), NHAPIs (HR 1.80, 95% CI 1.41-2.32; aHR 1.58, 95% CI 1.23-2.04), and NHBs (HR 1.98, 95% CI 1.59-2.47; aHR 2.19, 95% CI 1.74-2.76) (all P < 0.001). Our study finds rising incidence of ALM among Hispanics and NHWs along with elevated risk of ALM-specific mortality among racial and ethnic minoritized populations. Future strategies to mitigate health inequities in ALM are warranted.
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  • 文章类型: Journal Article
    精准医学,也被称为“个性化医疗”,寻求通过患者的基因组信息来确定预防和治疗疾病的策略。这允许以减少疾病负担的意图进行疾病识别的有针对性的方法。目前,无论是新兴的精准医学领域,还是既定的临床遗传学领域,都高度依赖基因组数据库,这些数据库充满了内在的偏见,特别是样本人群。这里最令人关注的不平等现象是影响澳大利亚原住民和托雷斯海峡岛民(或ZenadthKes)人民的不平等现象(以下简称,恭敬地,土著澳大利亚人)。正是从这个角度来看,澳大利亚基因组学中土著民族的夏季实习努力支持与土著澳大利亚人进行文化上适当的基因组研究的发展。我们在这里认为,土著研究人员最适合创造知情的,土著澳大利亚人参与基因组研究所需的文化安全环境。
    Precision medicine, also known as \"personalised medicine\", seeks to identify strategies in the prevention and treatment of disease informed by a patient\'s genomic information. This allows a targeted approach to disease identification with the intention of reducing the burden of illness. Currently, both the emerging field of precision medicine and the established field of clinical genetics are highly reliant on genomic databases which are fraught with inbuilt biases, particularly from sample populations. The inequities of most concern here are those affecting Aboriginal and Torres Strait Islander (or Zenadth Kes) peoples of Australia (hereafter, respectfully, Indigenous Australians). It is with this perspective that the Summer internship forINdigenous peoples inGenomics Australia endeavours to support the development of culturally appropriate genomic research with Indigenous Australians. We argue here that Indigenous researchers are best placed to create the informed, culturally safe environment necessary for Indigenous Australians to participate in genomic research.
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  • 文章类型: Journal Article
    目的:抗NMDAR脑炎是一种越来越被认可的自身免疫性疾病,不断发展的诊断标准。本研究旨在分析新西兰一家医院中抗NMDAR脑炎的患病率和诊断模式。
    方法:来自怀卡托医院实验室数据库的数据,检查了2013年8月至2023年7月之间的抗NMDAR抗体请求。病例根据年龄分类,性别和诊断结果。
    结果:在所有请求中,处理288/318(91%)和10/288(3.5%)抗NMDAR抗体为阳性。阳性病例按性别同样频繁,平均年龄29.4岁。只有6/10被诊断为抗NMDAR脑炎,而其他人则接受了替代诊断。毛利族人数过多。这项研究表明,在怀卡托地区,抗NMDAR脑炎的患病率较低,以成人为主。观察到种族差异。讨论了完善测试标准以优化成本效益的必要性。
    结论:抗NMDAR脑炎在怀卡托医院相对罕见,新西兰,与测试标准和种族多样性相关的诊断挑战。需要进一步研究和考虑测试方案。
    OBJECTIVE: Anti-NMDAR encephalitis is an increasingly recognised autoimmune disorder, with evolving diagnostic criteria. This study aims to analyse the prevalence and diagnostic patterns of anti-NMDAR encephalitis in a New Zealand hospital setting.
    METHODS: Data from Waikato Hospital\'s lab database, encompassing anti-NMDAR antibody requests between August 2013 and July 2023, were examined. Cases were categorised based on age, gender and diagnostic outcomes.
    RESULTS: In all requests, 288/318 (91%) were processed and 10/288 (3.5%) anti-NMDAR antibodies were positive. Positive cases were equally frequent by sex, with an average age of 29.4 years. Only 6/10 were diagnosed with anti-NMDAR encephalitis, while others received alternative diagnoses. Māori ethnicity was overrepresented. This study indicates a low prevalence of anti-NMDAR encephalitis in the Waikato region, with adult predominance. Ethnic disparities were observed. The need for refining testing criteria to optimise cost-effectiveness is discussed.
    CONCLUSIONS: Anti-NMDAR encephalitis is relatively rare in Waikato Hospital, New Zealand, with diagnostic challenges related to testing criteria and ethnic diversity. Further research and consideration of testing protocols are warranted.
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  • 文章类型: Journal Article
    目的:描述与糖尿病相关的下肢截肢(DRLEA)以及与新西兰北部专业足病医生的先前接触。
    方法:使用管理数据,北部地区确定DRLEA≥35年(2013年7月至2016年6月)。对于居住在奥克兰地铁的人(2015年7月至2016年6月),其他临床数据描述截肢原因,与糖尿病相关的合并症和足病接触。
    结果:有862DRLEA,488人,包括25%(n=214)的严重截肢。男性的年龄标准化截肢率是女性的三倍(每100,000人口分别为41.1对13.6[95%置信区间(CI):37.3-44.9对11.6-15.6/100,000])。截肢率因种族而异,毛利人和太平洋人分别比非毛利人高2.8倍和1.5倍,非太平洋人民。死亡率很高,在1-,入院后3个月和6个月(7.9%,分别为12.4%和18.3%)。外周血管疾病患病率较高(78.8%),神经病变(75.6%),视网膜病变(73.6%)和肾病(58%)。在第一次DRLEA入院前3个月,65%的患者未被足病专家看到。
    结论:我们的研究证实,毛利人和男性的DRLEA入院率较高。我们确定了太平洋人群中的比率升高,并观察到专家足病服务的利用率欠佳。
    OBJECTIVE: To characterise diabetes-related lower extremity amputations (DRLEA) and prior contact with specialist podiatrists in Northern New Zealand.
    METHODS: Using administrative data, DRLEA ≥35 years were identified for the Northern Region (July 2013 to June 2016). For those domiciled in Metro Auckland (July 2015 to June 2016), additional clinical data described amputation cause, diabetes-related comorbidities and podiatry contact.
    RESULTS: There were 862 DRLEA for 488 people, including 25% (n=214) major amputations. Age-standardised amputation rates were three times higher for males than females (41.1 vs 13.6 per 100,000 population [95% confidence interval (CI): 37.3-44.9 vs 11.6-15.6 per 100,000] respectively). Amputation rates varied by ethnicity, being 2.8 and 1.5 times higher respectively for Māori and Pacific people than non-Māori, non-Pacific people. Mortality was high at 1-, 3- and 6-months post-admission (7.9%, 12.4 % and 18.3% respectively). There was high prevalence of peripheral vascular disease (78.8%), neuropathy (75.6%), retinopathy (73.6%) and nephropathy (58%). In the 3 months prior to first DRLEA admission, 65% were not seen by specialist podiatry.
    CONCLUSIONS: Our study confirms higher DRLEA admission rates for Māori and males. We identified elevated rates among Pacific populations and observed suboptimal utilisation of specialist podiatry services.
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  • 文章类型: Journal Article
    目的:这项研究的目的包括调整患者信息工具以满足whānau(大家庭)毛利人的需求,识别和审查提供的早产儿眼部检查视网膜病变(ROPEE)的书面信息,并确定ROPEE书面信息的改善。
    方法:ROPEE患者信息(印刷传单,网站,app)是从新西兰奥特罗阿(Aotearoa)的所有三级新生儿重症监护病房获得的。使用经过调整的“20个良好设计原则”指南对信息进行了审查,并给出了星级评定和Flesch-Kincaid可读性评分,以确定患者的可接受性和可用性。
    结果:对七个ROPEE信息材料进行了审查,并与经过调整的良好设计原则工具保持一致。基于适应的良好设计原则,在书面信息的许多方面确定了改进的机会,包括文字和语言,语气和意义,内容和设计。Flesch-Kincaid年级阅读分数的范围为12-22岁。书面资料也没有使用毛利语(Aotearoa土著语言)或广泛使用毛利语图像。
    结论:存在改善ROPEEwhānau信息的机会,包括使内容更具可读性,可理解和视觉上的吸引力。为Aotearoa全国优化ROPEE的临床信息将支持whānau决策,使书面信息与毛利人(奥特罗阿土著人民)保持一致是一个优先事项。
    OBJECTIVE: The aims of this research include adapting a patient information tool for whānau (extended family) Māori needs, identifying and reviewing written information provided for the retinopathy of prematurity eye examination (ROPEE) and identifying improvements to ROPEE written information.
    METHODS: ROPEE patient information (printed leaflets, website, app) was obtained from all tertiary neonatal intensive care units in Aotearoa New Zealand (Aotearoa). Information was reviewed using an adapted \"20 good-design principles\" guide and given a star rating and Flesch-Kincaid readability score to identify acceptability and usability for patients.
    RESULTS: Seven ROPEE information materials were reviewed and varied in alignment with the adapted good-design principles tool. Based on the adapted good-design principles, opportunities were identified in many aspects of the written information for improvement, including words and language, tone and meaning, content and design. The Flesch-Kincaid grade level reading scores ranged from 12-22 years reading age. Written information also did not use te reo Māori (Aotearoa Indigenous language) or extensively use Māori imagery.
    CONCLUSIONS: Opportunities exist to improve ROPEE whānau information, including making content more readable, understandable and visually appealing. Optimising the clinical information on ROPEE nationally for Aotearoa will support whānau decision making, and aligning written information with Māori (Indigenous peoples of Aotearoa) is a priority.
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  • 文章类型: Journal Article
    目的:我们调查了1型糖尿病(T1D)患儿在诊断后12个月内的连续血糖监测(CGM)是否会根据种族或社会经济状况(SES)改变血糖结局不平等的发展。
    方法:在2020年10月1日至2021年10月1日诊断为T1D的15岁以下儿童诊断后12个月收集来自KIWIDIAB数据网络的去识别临床和SES数据。
    结果:有206名儿童新发T1D:毛利人使用CGM的比例为56.7%,欧洲人为77.2%。诊断后12个月平均(SD)HbA1c为62.4(14.2)mmol/mol,但是毛利人比欧洲人高9.4mmol/mol(p<0.001)。对于那些没有CGM的人,毛利人的HbA1c比欧洲人高10.8(95%CI2.3至19.4,p=0.013)mmol/mol,而使用CGM的毛利人和欧洲人之间没有差异的证据(分别为62.1[9.3]mmol/mol和58.5[12.4]mmol/molp=0.53)。比较SES的五分位数,SES最低五分位数的HbA1c为10.8(95%CI4.7至16.9,p<0.001)mmol/mol,高于最高水平。
    结论:这些观察数据表明,在新发病的T1D中,使用CGM可以改善12个月时HbA1c的种族差异。
    OBJECTIVE: We investigated if continuous glucose monitoring (CGM) in children with type 1 diabetes (T1D) within 12 months of being diagnosed modifies the development of glycaemic outcome inequity on the basis of either ethnicity or socio-economic status (SES).
    METHODS: De-identified clinical and SES data from the KIWIDIAB data network were collected 12 months after diagnosis in children under 15 years diagnosed with T1D between 1 October 2020 and 1 October 2021.
    RESULTS: There were 206 children with new onset T1D: CGM use was 56.7% for Māori and 77.2% for Europeans. Mean (SD) HbA1c was 62.4 (14.2) mmol/mol at 12 months post diagnosis, but Māori were 9.4mmol/mol higher compared to Europeans (p<0.001). For those without CGM, Māori had an HbA1c 10.8 (95% CI 2.3 to 19.4, p=0.013) mmol/mol higher than Europeans, whereas there was no evidence of a difference between Māori and Europeans using CGM (62.1 [9.3] mmol/mol vs 58.5 [12.4] mmol/mol p=0.53 respectively). Comparing quintiles of SES, HbA1c was 10.8 (95% CI 4.7 to 16.9, p<0.001) mmol/mol higher in the lowest quintile of SES compared to the highest.
    CONCLUSIONS: These observational data suggest CGM use ameliorates the ethnic disparity in HbA1c at 12 months in new onset T1D.
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  • 文章类型: Journal Article
    过度限制的临床试验资格标准会降低普遍性,注册慢,不成比例地排除了历史上代表性不足的人口。分析了由国家老龄化研究所资助的196项阿尔茨海默病和相关痴呆(AD/ADRD)试验的资格标准,以确定共同标准及其可能按种族/民族不成比例地排除参与者。试验按类型分类(48期I/II药理学,7III/IV期药理学,128非药理学,7诊断,和6个神经精神病学)和目标人群(51个AD/ADRD,58轻度认知障碍,25有风险,和62认知正常)。合格标准被编码为以下类别:医疗,神经学,精神病,和程序。进行了文献检索,以描述非洲裔美国人/黑人(AA/B)的资格标准差异的普遍性,西班牙裔/拉丁裔(H/L),美洲印第安人/阿拉斯加原住民(AI/AN)和夏威夷原住民/太平洋岛民(NH/PI)人口。试验的中位数为15个标准。最常见的标准是年龄截止(87%的试验),指定的神经系统(65%),和精神疾病(61%)。代表性不足的群体可能会被16个资格类别不成比例地排除在外;42%的试验仅在其标准中指定了讲英语的人。大多数试验(82%)包含操作性较差的标准(即,没有明确定义的标准,可以有多种解释/实施方式)和可能减少种族/族裔入学多样性的标准。
    Overly restrictive clinical trial eligibility criteria can reduce generalizability, slow enrollment, and disproportionately exclude historically underrepresented populations. The eligibility criteria for 196 Alzheimer\'s Disease and Related Dementias (AD/ADRD) trials funded by the National Institute on Aging were analyzed to identify common criteria and their potential to disproportionately exclude participants by race/ethnicity. The trials were categorized by type (48 Phase I/II pharmacological, 7 Phase III/IV pharmacological, 128 non-pharmacological, 7 diagnostic, and 6 neuropsychiatric) and target population (51 AD/ADRD, 58 Mild Cognitive Impairment, 25 at-risk, and 62 cognitively normal). Eligibility criteria were coded into the following categories: Medical, Neurologic, Psychiatric, and Procedural. A literature search was conducted to describe the prevalence of disparities for eligibility criteria for African Americans/Black (AA/B), Hispanic/Latino (H/L), American Indian/Alaska Native (AI/AN) and Native Hawaiian/Pacific Islander (NH/PI) populations. The trials had a median of 15 criteria. The most frequent criterion were age cutoffs (87% of trials), specified neurologic (65%), and psychiatric disorders (61%). Underrepresented groups could be disproportionately excluded by 16 eligibility categories; 42% of trials specified English-speakers only in their criteria. Most trials (82%) contain poorly operationalized criteria (i.e., criteria not well defined that can have multiple interpretations/means of implementation) and criteria that may reduce racial/ethnic enrollment diversity.
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