Jan Swasthya Sahyog, Village Ganiyari, Bilaspur, Chattisgarh, India.
Indian J Med Res. 2024;159(3 & 4):339-346. doi: 10.25259/IJMR_3300_21.
Background & objectives Sickle cell disease (SCD) is a common genetic disorder, predominantly found in the tribal population of India. The examples of models providing comprehensive care and management to individuals with SCD in public health facilities are sparse. The Sickle Cell Anaemia Control Mission is one such model implemented by Jan Swasthya Sahyog, a non-profit organization in collaboration with the National Health Mission in the Anuppur district of Madhya Pradesh. This article aimed to identify the key learnings from this programme that can guide the public health system strengthening with respect to SCD. Methods The Sickle Cell Anemia Control Mission Programme included door to door screening for anaemia, SCD and blood group. SCD cases were included in the programme and other individuals with Anemia were referred for further care. Care for individuals with SCD included counselling, provision of hydroxyurea, regular follow up of clinical parameters and management of complications. Care for individuals with SCD was provided through monthly patient support group (PSG) meetings and regular outpatient /in-patient care at public health facilities. Quantitative data on programme design, screening and patient management collected during programme implementation were used for analysis. Results A total of 39421 persons were screened in 18 months (August 2018-March 2020). Of these 81.9 per cent persons were anaemic, 16.9 per cent had sickle cell trait and 779 (1.98%) had SCD. Eighty-six already diagnosed individuals joined the programme for care. People from all caste categories were diagnosed with SCD. Out of 865 individuals with SCD, 157 underwent regular 9-11 months follow up and showed improvement in clinical symptoms and drug compliance. Interpretation & conclusions Central India has a significant burden of anaemia and SCD. This study found that SCD is present in non-tribals as well. PSGs are an efficient way to deliver non-emergency care for chronic diseases such as SCD.
背景与目的 镰状细胞病(SCD)是一种常见的遗传性疾病,主要发生在印度的部落人群中。在公共卫生设施中为 SCD 患者提供全面护理和管理的范例很少。Sickle Cell Anaemia Control Mission 是 Jan Swasthya Sahyog 与 Madhya Pradesh 的国家卫生使命合作实施的一个范例,该组织是非营利性组织。本文旨在从该项目中确定关键经验,以指导 SCD 相关的公共卫生系统强化。
方法 Sickle Cell Anemia Control Mission 项目包括上门筛查贫血、SCD 和血型。将 SCD 病例纳入项目,并将其他贫血患者转介进一步治疗。SCD 患者的护理包括咨询、提供羟基脲、定期随访临床参数和并发症管理。SCD 患者的护理通过每月的患者支持小组(PSG)会议和公共卫生设施的定期门诊/住院治疗提供。在项目实施过程中收集的关于项目设计、筛查和患者管理的定量数据用于分析。
结果 在 18 个月(2018 年 8 月至 2020 年 3 月)期间,共筛查了 39421 人。其中 81.9%的人贫血,16.9%的人有镰状细胞特征,779 人(1.98%)患有 SCD。已有 86 名确诊患者加入该项目接受治疗。所有种姓的人都被诊断出患有 SCD。在 865 名 SCD 患者中,有 157 人接受了定期 9-11 个月的随访,临床症状和药物依从性有所改善。
结论 印度中部地区有很大的贫血和 SCD 负担。本研究发现,非部落人群中也存在 SCD。PSG 是为 SCD 等慢性病提供非紧急护理的有效途径。