Comprehensive integrated care for patients with sickle cell disease in a remote aboriginal tribal population in Southern India

Pediatric Blood and Cancer

Volumn 61, Issue 4, 2014, Pages 702-705

  Nimgaonkar, Vivek ^a   Krishnamurti, Lakshmanan ^a   Prabhakar, Hari ^b   Menon, Nandakumar ^c  

^a CHILDREN S HOSPITAL OF PITTSBURGH   (United States)

^b HARVARD MEDICAL SCHOOL   (United States)

^c Action Comm Organisation Rehab D   (India)

Author keywords

Community based; Comprehensive care; India; Sickle cell disease; Tribal

Indexed keywords

ABORIGINE; ACUTE CHEST SYNDROME; ANEMIA; ARTICLE; CEREBROVASCULAR ACCIDENT; COST; DEATH; HEALTH CARE; HEALTH CARE DELIVERY; HEALTH CARE QUALITY; HOSPITAL; HOSPITALIZATION; HUMAN; IMMUNIZATION; INDIA; INFARCTION; LOWEST INCOME GROUP; MAJOR CLINICAL STUDY; MEDICAL RECORD; PRIORITY JOURNAL; PUERPERIUM; SCREENING; SEPSIS; SICKLE CELL ANEMIA; SPLEEN SIZE;

COMMUNITY BASED; COMPREHENSIVE CARE; INDIA; SICKLE CELL DISEASE; TRIBAL;

ADOLESCENT; ADULT; ANEMIA, SICKLE CELL; COMPREHENSIVE HEALTH CARE; DELIVERY OF HEALTH CARE, INTEGRATED; FEASIBILITY STUDIES; FEMALE; FOLLOW-UP STUDIES; HOSPITALIZATION; HUMANS; INDIA; MALE; PROGNOSIS; YOUNG ADULT;

EID: 84893763675     PISSN: 15455009     EISSN: 15455017     Source Type: Journal    
DOI: 10.1002/pbc.24723     Document Type: Article

References (42)

1. Vichinsky EP. Comprehensive care in sickle cell disease: Its impact on morbidity and mortality. Semin Hematol 1991; 28:220-226.
2. Haywood C, Jr., Beach MC, Lanzkron S, et al. A systematic review of barriers and interventions to improve appropriate use of therapies for sickle cell disease. J Natl Med Assoc 2009; 101:1022-1033.
3. Wang WC. Sickle-cell disease and compromised cognition. Pediatr Blood Cancer 2011; 56:705-706.
4. Verma IC. Burden of genetic disorders in India. Indian J Pediatr 2000; 67:893-898.
5. Verma IC, Bijarnia S. The burden of genetic disorders in India and a framework for community control. Commun Genet 2002; 5:192-196.
6. Patra PK, Chauhan VS, Khodiar PK, et al. Screening for the sickle cell gene in Chhattisgarh state, India: An approach to a major public health problem. J Commun Genet 2011; 2:147-151.
7. Nikhar HS, Meshram SU, Shinde GB. A comprehensive review of diverse issues related to sickle cell disease. East Afr J Public Health 2011; 8:164-169.
8. Mohanty D, Das K. Genetic counselling in tribals in India. Indian J Med Res 2011; 134:561-571.
9. Chandrashekar V, Soni M. Hemoglobin disorders in South India. ISRN Hematol 2011; 2011:748939.
10. Singh H, Dulhani N, Kumar BN, et al. Effective control of sickle cell disease with HU therapy. Indian J Pharmacol 2010; 42:32-35.
11. Dangi CB, Sajid M, Sawke GK, et al. Sickle cell hemoglobinopathies in district Bhopal. Indian J Hum Genet 2010; 16:100-102.
12. Balgir RS. Genetic diversity of hemoglobinopathies, G6PD deficiency, and ABO and Rhesus blood groups in two isolates of a primitive Kharia Tribe in Sundargarh District of Northwestern Orissa, India. J Commun Genet 2010; 1:117-123.
13. Italia K, Jain D, Gattani S, et al. HU in sickle cell disease-A study of clinico-pharmacological efficacy in the Indian haplotype. Blood Cells Mol Dis 2009; 42:25-31.
14. Balgir RS. Infant mortality and reproductive wastage associated with different genotypes of haemoglobinopathies in Orissa, India. Ann Hum Biol 2007; 34:16-25.
15. Patel AB, Athavale AM. Sickle cell disease in central India. Indian J Pediatr 2004; 71:789-793.
16. Chhotray GP, Dash BP, Ranjit M. Spectrum of hemoglobinopathies in Orissa, India. Hemoglobin 2004; 28:117-122.
17. Babu BV, Leela BL, Kusuma YS. Sickle cell disease among tribes of Andhra Pradesh and Orissa, India. Anthropol Anz 2002; 60:169-174.
18. Menon A, Salim KA. Sickle cell disease in south India. J Assoc Physicians India 1993; 41:617.
19. National Commission for Scheduled Tribes. New Delhi, India: Government of India; 2005.
20. Census of India 2001: India at a glance; scheduled castes and scheduled tribes. New Delhi: Office of the Registrar General and Census Commissioner India, Ministry of Home Affairs, Government of India; 2001.
21. Gupta RB, Tiwary RS, Pande PL, et al. Hemoglobinopathies among the Gond tribal groups of central India; interaction of alpha- and beta-thalassemia with beta chain variants. Hemoglobin 1991; 15:441-458.
22. Mosby's Manual of Diagnostic and Laboratory Tests Series Elsevier Health Sciences; 2010.
23. Patel DK, Mashon RS, Patel S, et al. Low dose HU is effective in reducing the incidence of painful crisis and frequency of blood transfusion in sickle cell anemia patients from Eastern India. Hemoglobin 2012; 36:409-420.
24. Global Health Observatory Data Repository: Health service coverage, Neonatal tetanus and immunization among 1-year-olds. Geneva: World Health Organization; 2010.
25. Progress for children: A World Fit for Children Statistical Review. New York: United Nations Childrens Emergency Fund; 2007.
26. The state of the World's children: The Convention on 20 years of the Rights of the Child. New York: United Nations Childrens Emergency Fund; 2010.
27. Wang CJ, Kavanagh PL, Little AA, et al. Quality-of-care indicators for children with sickle cell disease. Pediatrics 2011; 128:484-493.
28. P. F. income earnings, and poverty from the 2004 American Community Survey. In: BUREAU USC, editor. Washington, DC: U.S. Department of Commerce; Economics and Statistics Administration; 2005.
29. Grosse SD, Schechter MS, Kulkarni R, et al. Models of comprehensive multidisciplinary care for individuals in the United States with genetic disorders. Pediatrics 2009; 123:407-412.
30. Ritho J, Liu H, Hartzema AG, et al. HU use in patients with sickle cell disease in a Medicaid population. Am J Hematol 2011; 86:888-890.
31. Candrilli SD, O'Brien SH, Ware RE, et al. HU adherence and associated outcomes among Medicaid enrollees with sickle cell disease. Am J Hematol 2011; 86:273-277.
32. Lanzkron S, Haywood C, Jr., Fagan PJ, et al. Examining the effectiveness of HU in people with sickle cell disease. J Health Care Poor Underserved 2010; 21:277-286.
33. Lanzkron S, Haywood C, Jr., Hassell KL, et al. Provider barriers to HU use in adults with sickle cell disease: A survey of the Sickle Cell Disease Adult Provider Network. J Natl Med Assoc 2008; 100:968-973.
34. Dick MC. Standards for the management of sickle cell disease in children. Arch Dis Child Educ Pract Ed 2008; 93:169-176.
35. Koelen MA, Vaandrager L, Wagemakers A. What is needed for coordinated action for health? Fam Pract 2008; 25:i25-i31.
36. Cornish F, Campbell C. The social conditions for successful peer education: A comparison of two HIV prevention programs run by sex workers in India and South Africa. Am J Community Psychol 2009; 44:123-135.
37. Ochoa ER, Jr., Nash C. Community engagement and its impact on child health disparities: Building blocks, examples, and resources. Pediatrics 2009; 124:S237-S245.
38. Mehta SR, Afenyi-Annan A, Byrns PJ, et al. Opportunities to improve outcomes in sickle cell disease. Am Fam Physician 2006; 74:303-310.
39. Mukherjee MB, Colah RB, Ghosh K, et al. Milder clinical course of sickle cell disease in patients with alpha thalassemia in the Indian subcontinent. Blood 1997; 89:732.
40. Mukherjee MB, Surve R, Tamankar A, et al. The influence of alpha-thalassaemia on the haematological & clinical expression of sickle cell disease in western India. Indian J Med Res 1998; 107:178-181.
41. Mukherjee MB, Lu CY, Ducrocq R, et al. Effect of alpha-thalassemia on sickle-cell anemia linked to the Arab-Indian haplotype in India. Am J Hematol 1997; 55:104-109.
42. Nagel RL, Fleming AF. Genetic epidemiology of the beta s gene. Bailliere's Clin Haematol 1992; 5:331-365.