Diabetes registries and high-quality diabetes care.
Diabetes registries and high-quality diabetes care.
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糖尿病登记处和高质量的糖尿病护理。
DOI：
10.1016/s2213-8587(22)00386-2
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发表时间：
2023
期刊：
影响因子：
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通讯作者：
R. Heine
中科院分区：
文献类型：
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作者：
K. Khunti;C. Mathieu;Bart Torbeyns;S. Del Prato;R. Heine
根据圣文森特宣言的建议，许多国家已经建立了糖尿病登记处，以帮助提高糖尿病护理质量。1糖尿病登记可以帮助测量和比较结果，并强调护理质量改进的差异。完善的登记系统可以报告广泛的参数，如人群特征、风险因素控制、并发症、治疗和费用，并确定实施循证指南建议的差距。最全面的糖尿病登记处整理人口统计学数据，如年龄、性别、种族和剥夺措施，以及风险因素和生物标志物数据，如HbA 1c、血压、血脂、尿白蛋白/肌酐比值、肾和肝功能、生活方式数据（例如，吸烟状况）、合并症、就诊率、微血管和大血管并发症数据、眼部和足部检查数据，与死亡率的联系。然而，数据收集可能是可变的，登记册很少纳入保健系统，主要用于流行病学目的。2019年，国际健康结果测量联盟（ICHOM）就对1型和2型糖尿病患者特别重要的结果发表了共识。然后，从2021年开始的系统性综述确定了截至2020年12月31日的所有登记研究，并将其与ICHOM标准结局集进行了比较。3本综述确定了12个国家临床糖尿病登记处，所有登记处均记录了体重、HbA 1c、血脂和胰岛素治疗，在记录其他过程和结局指标方面存在差异。系统性综述还得出结论，这些登记研究深入了解了糖尿病患者的患病率、治疗、并发症和死亡率，并且大多数登记研究允许使用指南作为基准监测护理质量。然而，对区域或国家卫生保健政策和患者结果的影响是可变的，不明确。另一个长期存在的登记处是糖尿病翻译部，这是美国疾病控制和预防中心以及美国国家糖尿病、消化和肾脏疾病研究所的一项倡议，该研究所资助了青年糖尿病研究。4该登记研究深入了解了时间趋势和健康差异、表现变化、生活质量以及对结果的影响。目前，DISCOVER全球登记中心还建立了全球登记中心，旨在建立一个新的长期可扩展和可持续的登记中心，以提供有关患者人口统计学、疾病管理、医疗保健利用以及2型糖尿病患者的护理质量和结局的真实数据。该登记特别针对糖尿病登记很少的低收入和中等收入国家（LMIC）。2016年，代表38个国家的糖尿病专家和政治家发布了《柏林宣言》，呼吁采取行动，敦促政策制定者通过投资和支持早期发现、早期控制和抢先体验公平护理来减轻2型糖尿病的负担。6该宣言的另一个关键支柱是国家监测，以衡量临床结果，并显示控制不佳的人群比例，并提出解决这些问题的措施。2022年4月，欧洲糖尿病论坛（EUDF），一个由医疗保健专业人员，研究人员，行业协会和糖尿病患者组成的代表性组织，发表了关于制定，维持，利用注册表并强调...
Diabetes registries have been established in many countries following recommendations of the St Vincent Declaration to help improve quality of care for diabetes. 1 Diabetes registries can help measure and compare outcomes, and highlight variations in care for quality improvement. Well established registries can report on a wide range of parameters such as characteristics of the population, risk factor control, complications, treatments, and costs, and identify gaps in implementation of evidence-based guideline recommendations. The most comprehensive diabetes registries collate demographic data such as age, sex, ethnicity, and deprivation measures, as well as data on risk factors and biomarkers such as HbA1c, blood pressure, lipids, urine albumin-to-creatinine ratio, kidney and liver function, lifestyle data (eg, smoking status), comorbidities, consultation rates, data on microvascular and macrovascular complications, data on eye and feet examination, and linkage to mortality. However, data capture can be variable, and registries are rarely integrated in the health-care system and are primarily used for epidemiological purposes. In 2019, the International Consortium on Health Outcome Measurement (ICHOM) published a consensus on outcomes that are particularly important for people with type 1 and type 2 diabetes. 2 Then, a systematic review from 2021 identified all registries up to Dec 31, 2020 and compared them with the ICHOM standard set of outcomes. 3 This review identified 12 national clinical diabetes registries with all recording bodyweight, HbA1c, lipid profile, and insulin treatment with variability in recording other process and outcome measures. The systematic review also concluded that the registries gave insight into the prevalence, treatment, complications, and mortality in people with diabetes and that most of these registers allowed monitoring of the quality of care using guidelines as a benchmark. However, the influence on regional or national health-care policy and patient outcomes was variable and not clear. Another long-standing registry is the Division of Diabetes Translation, which is an initiative of the US Centre for Disease Control and Prevention and the US National Institute of Diabetes and Digestive and Kidney diseases that funded the SEARCH for diabetes in youth study. 4 This registry has provided insights into temporal trends and health disparities, changes in presentation, quality of life, and effect on outcomes. There is now also an establishment of global registries with the DISCOVER Global Registry with the aim of establishing a new long-term scalable and sustainable registry to provide real-world data on patient demography, disease management, health-care utilisation, and quality of care and outcomes of people with type 2 diabetes. This registry is particularly aimed at low-income and middle-income countries (LMICs) where there are few diabetes registries. In 2016, diabetes experts and politicians representing 38 countries launched the Berlin Declaration with a call to action urging policy makers to reduce the burden of type 2 diabetes by investing in and supporting early detection, early control, and early access to equitable care. 6 Another key pillar of this declaration was for national monitoring to measure clinical outcomes and to show the proportion of people with suboptimal control, and propose actions being taken to address these issues.In April, 2022, the European Diabetes Forum (EUDF), a representative group comprising health-care professionals, researchers, industry associates, and people with diabetes published key recommendations on developing, maintaining, and utilising registries and highlighted …