Characterising demographics, knowledge, practices and clinical care among patients attending sickle cell disease clinics in Eastern Uganda

Olupot‐Olupot, Peter; Wabwire, Ham; Ndila, Carolyne; Adong, Ruth; Ochen, Linus; Amorut, Denis; Abongo, Grace; Okalebo, Charles Bernard; Akello, Sarah Rachael; Oketcho, Joy B; Okiror, William; Asio, Sarah; Odiit, Amos; Alaroker, Florence; Nyutu, Gideon; Maitland, Kathryn; Williams, Thomas N.

doi:10.12688/wellcomeopenres.15847.2

Cited by 8 publications

(4 citation statements)

References 23 publications

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“…In Uganda, the pooled uptake of genotype screening is 22.82% (95% CI: [18.92-27.1]). The country currently ranks fifth in the global burden of sickle cell births and the highest in the East African Subcontinent [33]. The high number of children born with sickle cell disease in Uganda can partly be attributed to the high level of teenage pregnancies, estimated at 25% and the highest in East Africa [34].…”

Section: Pe-riodmentioning

confidence: 99%

Update on the practice of premarital screening for sickle cell traits in Africa: a systematic review and meta-analysis

Dilli,

Obeagu,

Tamale

et al. 2024

BMC Public Health

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Background Screening for sickle cell traits before marriage or producing children is one of the outstanding preventive measures for sickle cell disease (SCD).The disease is a collection of inherited blood disorders that impact millions globally, with a predominant 75% occurrence in the sub-Saharan region. With increasing burden of SCD on the continent amidst a cost effective prevention method, no study has systematically reviewed or presented meta-analytic uptake or practice of premarital sickle cell trait screening. Methods This review systematically explored the uptake or practice of premarital genotype screening in Africa. We searched PubMed and Scopus databases for African studies on premarital screening for sickle cell traits. Results Our results indicate that the pooled uptake of premarital sickle cell trait screening in Africa is 47.82% (95% CI: [46.53–49.11]; I2: 98.95% [98.74–99.13]). Our review observed, a significant relationship between the awareness of sickle cell disease and the uptake of genotype screening; F(1, 13) = 12.04, p = 0.004). The model explained approximately 48.08% of the variation in genotype screening (R² = 0.4808) and predicted a 0.729 increase in the likelihood of genotype screening uptake for every unit rise in sickle cell disease awareness (β = 0.729, p = 0.004). Additionally, Pearson correlation (r = 0.6934) indicated a moderately strong positive correlation between the two variables. Conclusion With over 75% of the global burden of sickle cell disease domiciled in Africa, the continent cannot overlook the cost of hemoglobinopathies. The uptake of sickle cell traits screening is suboptimal across the continent. To achieve the mandate of sustainable development goal number (3); to end preventable deaths of newborns and children under 5 years of age by 2030, there is need to intensify campaigns on premarital genetic screening through education and other health promotion tools.

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Section: Pe-riodmentioning

confidence: 99%

Update on the practice of premarital screening for sickle cell traits in Africa: a systematic review and meta-analysis

Dilli,

Obeagu,

Tamale

et al. 2024

BMC Public Health

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“…Hydroxyurea (hydroxycarbamide), a WHO essential medicine [ 130 ], is a safe, effective [ 131 ], and approved disease-modifying therapy for oral use in children with SCD in sub-Saharan Africa [ 132 ]. It has been extensively studied and prescribed in developed countries [ 131 , 133 ] and yet underutilized in high-SCD-burden countries [ 134 , 135 ]. In Nigeria, for instance, less than 1 percent of an estimated 1.2 million SCD population use HU [ 49 ].…”

Section: Comprehensive Care Of Children With Scdmentioning

confidence: 99%

Sickle Cell Disease in Children and Adolescents: A Review of the Historical, Clinical, and Public Health Perspective of Sub-Saharan Africa and Beyond

Egesa

Nakalema

Waibi

et al. 2022

International Journal of Pediatrics

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Sickle cell disease (SCD) is an umbrella term for a group of life-long debilitating autosomal recessive disorders that are caused by a single-point mutation (Glu→Val) that results in polymerization of hemoglobin (Hb) and reversible sickle-shape deformation of erythrocytes. This leads to increased hemolysis of erythrocytes and microvascular occlusion, ischemia-reperfusion injury, and tissue infarction, ultimately causing multisystem end-organ complications. Sickle cell anemia (HbSS) is the most common and most severe genotype of SCD, followed by HbSC, HbSβ0thalassemia, HbSβ+thalassemia, and rare and benign genotypes. Clinical manifestations of SCD occur early in life, are variable, and are modified by several genetic and environmental factors. Nearly 500 children with SCD continue to die prematurely every day, due to delayed diagnosis and/or lack of access to comprehensive care in sub-Saharan Africa (SSA), a trend that needs to be urgently reversed. Despite proven efficacy in developed countries, newborn screening programs are not universal in SSA. This calls for a consolidated effort to make this possible, through the use of rapid, accurate, and cheap point-of-care test kits which require minimal training. For almost two decades, hydroxyurea (hydroxycarbamide), a century-old drug, was the only disease-modifying therapy approved by the U.S. Food and Drug Administration. Recently, the list expanded to L-glutamine, crizanlizumab, and voxelotor, with several promising novel therapies in the pipeline. Despite its several limitations, hematopoietic stem cell transplant (HSCT) remains the only curative intervention for SCD. Meanwhile, recent advances in gene therapy trials offer a glimpse of hope for the near future, although its use maybe limited to developed countries for several decades.

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“…In most parts of sub-Saharan Africa (SSA), SCD is a growing public health problem, but data on the burden of the disease is incomplete partly due to a lack of universal newborn screening, lack of SCD registries, and associated stigma. Within the current data limits, the vast part of Uganda has a sickle cell trait prevalence of between 9-21% with 1-2% of babies born with sickle cell disease (SCD) [7,9]. These figures are high and rank this country the 5 th with the highest burden of sickle cell disease in Africa [9].…”

Section: Introductionmentioning

confidence: 99%

“…Within the current data limits, the vast part of Uganda has a sickle cell trait prevalence of between 9-21% with 1-2% of babies born with sickle cell disease (SCD) [7,9]. These figures are high and rank this country the 5 th with the highest burden of sickle cell disease in Africa [9].…”

Section: Introductionmentioning

confidence: 99%

Caregivers’ use of herbal and conventional medicine to treat children with sickle cell disease at Jinja Regional Referral Hospital, Eastern Uganda: A cross-sectional study

Apolot,

Obakiro,

Mukunya

et al. 2023

PLoS ONE

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Background Evidence suggests use of herbal and conventional medicines in the treatment of Sickle Cell Disease (SCD). We examined factors associated with caregivers’ use of combined herbal and conventional medicine to treat children with SCD. Methods A cross-sectional study was conducted at Jinja Regional Referral Hospital between January and March 2022. Caregivers of children with SCD aged 1 to 18 years attending the Sickle Cell Clinic were interviewed using structured questionnaires. We collected data on caregivers’ socio-demographic characteristics, perceptions of and intentions to use either or both therapies, self-reported use of either or both therapies and community and health-related factors. A multivariable logistic regression model was computed to assess the factors independently associated with caregivers’ use of combined therapy, using Stata version 15.0. Results 372 caregivers were interviewed. On average, respondents were aged 34.3 years (Standard Deviation [SD]: ±9.8 years). 37% (n = 138) of the caregivers reported the use of both herbal and conventional medicine, 58.3% (n = 217) reported use of only conventional medicine, while 4.6% (n = 17) reported use of herbal medicine only. Higher odds of using combination therapy were found in caregivers aged 60+ years (adjusted odds ratio [AOR] = 11.8; 95% CI: 1.2, 115.2), those with lower secondary education (AOR = 6.2; 95% CI: 1.5, 26.0), those who believed in the safety of herbal medicine (AOR = 3.3; 95% CI: 1.5, 7.6) and those who thought that use of both therapies were safe (AOR = 7.7; 95% CI: 3.5, 17.0). Conclusion More than one-third of the caregivers reported use of combined herbal and conventional medicine, most of whom were older (>60%) and had lower secondary education. There is need for targeted health promotion to educate caregivers about the dangers of using both herbal and conventional medicines in treating children with SCD.

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Characterising demographics, knowledge, practices and clinical care among patients attending sickle cell disease clinics in Eastern Uganda

Cited by 8 publications

References 23 publications

Update on the practice of premarital screening for sickle cell traits in Africa: a systematic review and meta-analysis

Update on the practice of premarital screening for sickle cell traits in Africa: a systematic review and meta-analysis

Sickle Cell Disease in Children and Adolescents: A Review of the Historical, Clinical, and Public Health Perspective of Sub-Saharan Africa and Beyond

Caregivers’ use of herbal and conventional medicine to treat children with sickle cell disease at Jinja Regional Referral Hospital, Eastern Uganda: A cross-sectional study

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