A social profile of deaths related to sickle cell disease in India: a case for an ethical policy response.
A social profile of deaths related to sickle cell disease in India: a case for an ethical policy response.
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DOI：
10.3389/fpubh.2023.1265313
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发表时间：
2023
影响因子：
5.2
通讯作者：
Singh, Rajan
中科院分区：
文献类型：
--
作者：
Chattoo, Sangeeta;Jain, Dipty;Nashine, Nidhi;Singh, Rajan
印度占全球SCD新生儿的14.5%，每年约有42，000多人，仅次于撒哈拉以南非洲。尽管有廉价的诊断和治疗选择，但SCD仍然是医疗保健政策和实践中被忽视的疾病。流行病学模型的基础上，小，往往过时，区域研究（主要是从撒哈拉以南非洲）估计，50%至90%的受影响的儿童将/死亡之前，5岁。这一前提，再加上降低5岁以下儿童死亡率的目标（可持续发展目标4），使筛查和预防新生儿的公共卫生干预措施成为优先事项，削弱了对长期卫生和社会保健的投资。本文介绍了一个回顾性的，描述性分析的447例患者诊断为镰状细胞或镰状β地中海贫血，谁在印度的三级保健中心入院后死亡的社会人口概况。我们使用了2016年1月至2021年2月期间在儿科和成人/内科病房住院的3，778名镰状细胞患者的匿名医院记录。大多数住院死亡发生在生命的第二和第三个十年，住院一周后。2016-2019年的总体死亡率为14%，随着时间的推移，性别差异很小。与我们的预期相反，于2020年至2021年COVID-19大流行的第一年，住院死亡人数并无增加。结论强调了纵向的，社会人口统计学数据的重要性，死亡提供了重要的见解，确定伦理政策干预措施，重点是改善SCD的结果随着时间的推移，减少不公平的获得保健，并防止什么可能被认为是“过度”死亡。
India accounts for 14.5 percent of the global SCD newborns, roughly over 42,000 a year, second to sub-Saharan Africa. Despite the availability of cheap diagnostic and treatment options, SCD remains a largely neglected disease within healthcare policy and practice. Epidemiological modeling based on small, often dated, regional studies (largely from sub-Saharan Africa) estimate that between 50 and 90 percent of affected children will/die before the age of 5 years. This premise, coupled with targets of reducing under 5 mortality (SDG 4), privileges public health interventions for screening and prevention of new births, undermining investments in long-term health and social care. This paper presents a retrospective, descriptive analysis of the socio-demographic profile of 447 patients diagnosed with sickle cell or sickle-beta thalassemia, who died following admission at a tertiary care entre in India. We used anonymized hospital records of 3,778 sickle cell patients, admitted in pediatric and adult/medical wards between January 2016 and February 2021. A majority of hospital deaths occurred in the second and third decades of life, following a hospital admission for a week. The overall mortality during 2016–2019 was 14% with little gender difference over time. Contrary to our expectations, the number of hospital deaths did not increase during the first year of the COVID-19 pandemic, between 2020 and 2021. The conclusion highlights the importance of longitudinal, socio-demo-graphic data on deaths as providing important insights for identifying ethical policy interventions focused on improving SCD outcomes over time, reducing inequities in access to care, and preventing what might be considered “excess” deaths.
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影响因子：
3.2
作者：
Jain, Dipty;Arjunan, Aishwarya;Krishnamurti, Lakshmanan
通讯作者：
Krishnamurti, Lakshmanan
影响因子：
1.8
作者：
Chattoo, Sangeeta
通讯作者：
Chattoo, Sangeeta
影响因子：
2.3
作者：
Dave, Kapilkumar;Desai, Shrey;Desai, Gayatri
通讯作者：
Desai, Gayatri
影响因子：
2.7
作者：
Geethakumari, Konathala;Kusuma, Yadlapalli S.;Babu, Bontha V.
通讯作者：
Babu, Bontha V.
影响因子：
4.6
作者：
Hockham, Carinna;Bhatt, Samir;Piel, Frederic B.
通讯作者：
Piel, Frederic B.