Initial outcomes of a comprehensive care model for sickle cell disease among a tribal population in rural western India

Desai, Gayatri; Dave, Kapil Kumar; Banerjee, Somalee; Babaria, Palav; Gupta, Reena

doi:10.18203/2394-6040.ijcmph20161399

Cited by 15 publications

(8 citation statements)

References 15 publications

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“…The LTFU rate in our setting was about 28%. A study from the same setting in 2014 reported a LTFU rate of 12% in a cohort of SCD patients followed up for one year [9]. The higher LTFU rates were due to improvement in the LTFU tracking system with an IT-based background.…”

Section: Discussionmentioning

confidence: 99%

“…As the burden of SCD is high among tribal populations who predominantly inhabit hilly terrain, delivering healthcare to these groups remains a challenge [8]. The current clinical management of patients suffering from sickle cell disease in India is inadequate, and basic facilities to manage patients are usually absent or sub-optimal even in tribal pockets where the burden of SCD is high [9]. The World Health Organization (WHO) in its 2006 report recommended that, in areas where SCD is common, dedicated centers should be erected to ensure adequate services for prevention and treatment.…”

Section: Introductionmentioning

confidence: 99%

“…Activities under the program include mass screening of tribal groups and provision of care using public health facilities [12]. Although screening was undertaken, the availability and coverage of proven interventions, like prophylactic and therapeutic hydroxyurea and pneumococcal vaccination, were sub-optimal in public health facilities due to various reasons, for example, challenges relating to access to tribal areas [9,13].…”

Section: Introductionmentioning

confidence: 99%

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Attrition from Care and Clinical Outcomes in a Cohort of Sickle Cell Disease Patients in a Tribal Area of Western India

et al. 2019

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In a tribal area of western India, a non-governmental organization implemented a comprehensive sickle cell disease (SCD) program at a secondary level hospital. In a cohort of SCD patients registered during December 2015 to June 2017, we assessed rates of lost to follow-up (LTFU) during the follow-up period using routinely collected data. We compared the uptake of proven interventions and indicators of disease severity from one year prior to registration until the end of the study (June 2018). Of 404 patients, the total follow-up duration was 534 person-years (PY). The rate (95% CI) of LTFU was 21 (17.5–25.3) per 100 PY. The proportion of people who received the pneumococcal vaccine improved from 10% to 93%, and coverage of hydroxyurea improved from 3.5% to 88%. There was a statistically significant decrease in rates (per 100 PY) of pain crisis (277 vs 53.4), hospitalization (49.8 vs 42.2), and blood transfusion (27.4 vs 17.8) after enrollment in the SCD program. Although clinical intervention uptake was high, one quarter of the patients were LTFU. The study demonstrated significant reductions in disease severity in SCD patients.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Attrition from Care and Clinical Outcomes in a Cohort of Sickle Cell Disease Patients in a Tribal Area of Western India

et al. 2019

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“…The specialized care may not be available in remote tribal and rural areas of India [33]. The need for scrupulous health care for pregnant women and newborn with SCD is crucial in improving maternal and neonatal health in the tribal areas [34]. Identification of women with higher risk of adverse outcomes, regular third trimester screening for foetal growth and blood transfusion for women with SCD may represent a strategy to reduce adverse maternal outcomes [33–35].…”

Section: Discussionmentioning

confidence: 99%

Sickle cell disease and pregnancy outcomes: a study of the community-based hospital in a tribal block of Gujarat, India

Desai

Anand

Shah

et al. 2017

J Health Popul Nutr

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BackgroundSickle cell disease (SCD) is a hereditary blood disorder prevalent in tribal regions of India. SCD can increase complications during pregnancy and in turn negatively influence pregnancy outcomes. This study reports the analysis of tribal maternal admissions in the community-based hospital of SEWA Rural (Kasturba Maternity Hospital) in Jhagadia block, Gujarat. The objective of the study is to compare the pregnancy outcomes among SCD, sickle cell trait and non-SCD admissions. This study also estimated the risk of adverse pregnancy outcomes for SCD admissions.MethodsThe data pertains to four and half years from March 2011 to September 2015. The total tribal maternal admissions were 14640, out of which 10519 admissions were deliveries. The admissions were classified as sickle cell disease, sickle cell trait and non-sickle cell disease. The selected pregnancy outcomes and maternal complications were abortion, stillbirth, Caesarean section, haemoglobin levels, blood transfusion, preterm pregnancy, newborn birth weight and other diagnosed morbidities (IUGR, PIH, eclampsia, preterm labour pain). The odds ratios for each risk factor were estimated for sickle cell patients. The odds ratios were adjusted for the respective years.ResultsOverall, 1.2% (131 out of 10519) of tribal delivery admissions was sickle cell admissions. Another 15.6% (1645 out of 10519) of tribal delivery admissions have sickle cell trait. The percentage of stillbirth was 9.9% among sickle cell delivery admission compared to 4.2% among non-sickle cell deliveries admissions. Among sickle cell deliveries, 70.2% were low birth weight compared to 43.8% of non-sickle cell patient. Similarly, almost half of the sickle cell deliveries needed the blood transfusion. The 45.0% of sickle cell delivery admissions were pre-term births, compared to 17.3% in non-SCD deliveries. The odds ratio of severe anaemia, stillbirth, blood transfusion, Caesarean section, and low birth weight was significantly higher for sickle cell admissions compared to non-sickle cell admissions.ConclusionsThe study exhibited that there is a high risk of adverse pregnancy outcomes for women with SCD. It may also be associated with the poor maternal and neonatal health in these tribal regions. Thus, the study advocates the need for better management of SCD in tribal Gujarat.

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“…A comprehensive care model at Sewa Rural in Gujarat was successfully implemented, which included screening, both out-patient and in-patient care of SCD patients as well as health education. A one year follow up of 164 SCD patients in this rural region was possible and pain crises were seen in 72 patients (43.9%); 59 patients (35.9%) required hospitalization, 43 patients (26.2%) required blood transfusions and three patients (1.6%) died during this short follow up [14].…”

Section: Providing Comprehensive Care In Rural Regionsmentioning

confidence: 97%

Newborn Screening for Sickle Cell Disease: Indian Experience

Colah

Mehta

Mukherjee

2018

IJNS

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Sickle cell disease (SCD) is a major public health problem in India with the highest prevalence amongst the tribal and some non-tribal ethnic groups. The clinical manifestations are extremely variable ranging from a severe to mild or asymptomatic condition. Early diagnosis and providing care is critical in SCD because of the possibility of lethal complications in early infancy in pre-symptomatic children. Since 2010, neonatal screening programs for SCD have been initiated in a few states of India. A total of 18,003 babies have been screened by automated HPLC using either cord blood samples or heel prick dried blood spots and 2944 and 300 babies were diagnosed as sickle cell carriers and SCD respectively. A follow up of the SCD babies showed considerable variation in the clinical presentation in different population groups, the disease being more severe among non-tribal babies. Around 30% of babies developed serious complications within the first 2 to 2.6 years of life. These pilot studies have demonstrated the feasibility of undertaking newborn screening programs for SCD even in rural areas. A longer follow up of these babies is required and it is important to establish a national newborn screening program for SCD in all of the states where the frequency of the sickle cell gene is very high followed by the development of comprehensive care centers along with counselling and treatment facilities. This comprehensive data will ultimately help us to understand the natural history of SCD in India and also help the Government to formulate strategies for the management and prevention of sickle cell disease in India.

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Initial outcomes of a comprehensive care model for sickle cell disease among a tribal population in rural western India

Cited by 15 publications

References 15 publications

Attrition from Care and Clinical Outcomes in a Cohort of Sickle Cell Disease Patients in a Tribal Area of Western India

Attrition from Care and Clinical Outcomes in a Cohort of Sickle Cell Disease Patients in a Tribal Area of Western India

Sickle cell disease and pregnancy outcomes: a study of the community-based hospital in a tribal block of Gujarat, India

Newborn Screening for Sickle Cell Disease: Indian Experience

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