Health policy for sickle cell disease in Africa: experience from Tanzania on interventions to reduce under‐five mortality

Makani, Julie; Soka, Deogratius; Rwezaula, Stella; Krag, Marlene; Mghamba, Janneth; Ramaiya, Kaushik; Cox, Sharon E.; Grosse, Scott D.

doi:10.1111/tmi.12428

Cited by 47 publications

(51 citation statements)

References 16 publications

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“…Sickle cell anemia is considered an orphan disease in some countries [7], including the DRC. WHO estimates that in the DRC the rate of heterozygous (AS) carriers is 25% and the annual incidence of the SS homozygous form is around 15‰ of births [2].…”

Section: Social Representations and Knowledge About The Diseasementioning

confidence: 99%

“…However, to date there is not yet an effective implementation of activities to fight this disease. WHO recommends that in countries where the incidence of sickle cell anemia is greater than 0.5 per 1,000 births, a full-fledged disease control program should be established [7]. This program has existed in the DRC since 2006 but without concrete activities of sickle cell control in the field, especially in Kisangani, as a result of a lack of funds.…”

Section: Social Representations and Knowledge About The Diseasementioning

confidence: 99%

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Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Batina¹,

Kambale²,

Sabiti³

et al. 2017

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Introduction: The World Health Organization estimates that up to 70% of sickle cell deaths in sub-Saharan Africa are preventable by implementing measures that include early diagnosis, information, education and prophylaxis of infections. In the city of Kisangani, in the Tshopo province of the Democratic Republic of the Congo, identifying difficulties in access to care will help guide interventions to fight sickle cell anemia. The aim of this study was to identify the barriers preventing sickle cell patients from accessing care in the Democratic Republic of Congo. Methods: This cross-sectional study involved 158 sickle cell patients who consulted at least once in one of the general hospitals in Kisangani in 2010. The interview guide included questions about social representations and knowledge about the disease, perceptions and knowledge of the provision of health services and financial accessibility to health facilities. Results: For 44.9% of the study participants attribute sickle cell disease to demonic origin or divine curse. The cost of care associated with sickle cell anemia is unaffordable for 93.6% of participants. The 77.8% and 44.9% indicated that it is in the church and in traditional healer's places respectively that the care is more prompt than in formal health system. However, only 22.8% patients in health facilities felt that they waited a long time before commencing treatment. Conclusion:Sickle cell control in Kisangani should focus on raising awareness, information and education of population, sickle cell disease patients and their families. In addition, centers for the comprehensive management of sickle cell disease supported by the state should be developed. Similarly, research on medicinal plants used by traditional healers is necessary.

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Section: Social Representations and Knowledge About The Diseasementioning

confidence: 99%

Section: Social Representations and Knowledge About The Diseasementioning

confidence: 99%

Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Batina¹,

Kambale²,

Sabiti³

et al. 2017

ajhissues

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“…Obviously missing is Sub-Saharan Africa for which little information is currently available, and limited congenital hypothyroidism (CH) and sickle cell NBS activities are ongoing. [13][14][15] A review of the literature and personal contacts working in Africa revealed documentation of various beginning newborn screening activities in Ghana, 16,17 Nigeria, 18 Tanzania, 19 Angola, 20 Ethiopia, 21 Democratic Republic of Congo, 22 and South Africa. 23,24 For the remainder of the world, we have drawn on our extensive NBS experience and contacts with NBS program managers within our respective regions to solicit recent updates in order to comprehensively describe ongoing regional NBS activities.…”

Section: Introductionmentioning

confidence: 99%

Current status of newborn screening worldwide: 2015

Therrell

Padilla

Loeber³

et al. 2015

Seminars in Perinatology

464

418

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“…Tanzania has recognized the public health significance of SCA and is introducing appropriate interventions, 8 but research describing SCA mortality rates and the burden of malaria in this population has been limited to the coastal city of Dar es Salaam. 3,9 The sickle gene is most prevalent in North Western Tanzania, particularly around Lake Victoria, 10,11 and few studies have described the morbidity and mortality of SCA in this region.…”

Section: Introductionmentioning

confidence: 99%

Complications of sickle cell anaemia in children in Northwestern Tanzania

et al. 2016

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Objectives Tanzania has the 3rd highest birth rate of sickle cell anaemia (SCA) in Africa, but few studies describe severity of complications or available treatments, especially in North West Tanzania around Lake Victoria where the sickle gene is most prevalent. This is a report of the spectrum of clinical disease and range of interventions available at Bugando Medical Centre (Bugando) in North West Tanzania in Africa. Methods A cross-sectional study was carried out in Bugando between August 1, 2012 and September 30, 2012. Children (< 15 years old) with SCA attending Bugando were sequentially enrolled. A trained research assistant completed a Swahili questionnaire with the parent or guardian of each participant concerning demographic information, clinical features of disease, and treatments received. Results Among the 124 participants enrolled, the median age was 6 years [IQR 4-8.5], and only 13 (10.5%) were < 3 years old. Almost all participants (97.6%) had a prior history of a vaso-occlusive episode, 83 (66.9%) had prior acute chest syndrome, and 21 (16.9%) had prior stroke. In the preceding 12 months, 120 (96.8%) had been hospitalized, and a vaso-occlusive episode was the most common reason for hospitalization (35.5%). Prescriptions for folic acid (92.7%) and malaria prophylaxis (84.7%) were common, but only one had received a pneumococcal vaccine, and none had received hydroxyurea or prophylactic penicillin. Conclusion Children with SCA receiving care in Tanzania are diagnosed late, hospitalized frequently, and have severe complications. Opportunities exist to improve care through wider access to screening and diagnosis as well as better coordination of comprehensive care.

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Health policy for sickle cell disease in Africa: experience from Tanzania on interventions to reduce under‐five mortality

Cited by 47 publications

References 16 publications

Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Barriers to healthcare for sickle cell disease patients in the Democratic Republic of Congo

Current status of newborn screening worldwide: 2015

Complications of sickle cell anaemia in children in Northwestern Tanzania

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