Barriers and Facilitators of Use of Hydroxyurea among Children with Sickle Cell Disease: Experiences of Stakeholders in Tanzania

Kilonzi, Manase; Mlyuka, Hamu J; Felician, Fatuma Felix; Mwakawanga, Dorkasi L.; Chirande, Lulu; Myemba, David T; Sambayi, Godfrey; Mutagonda, Ritah; Mikomangwa, Wigilya P.; Ndunguru, Joyce; Jonathan, Agnes; Ruggajo, Paschal; Minja, Irene Kida; Balandya, Emmanuel; Makani, Julie; Sirili, Nathanael

doi:10.3390/hemato2040048

Cited by 14 publications

(31 citation statements)

References 23 publications

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“…Participants were purposively recruited from the electronic database of the Sickle Pan-African Research Consortium (SPARCO)-Tanzania database at MUHAS (patients’ registry). The study was part of the project that assessed factors influencing the utilization of HU in Tanzania [ 10 ]. Therefore, parents with SCD children who never used HU were excluded.…”

Section: Methodsmentioning

confidence: 99%

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The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania

Kilonzi

Mwakawanga

Felician

et al. 2022

IJERPH

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Tanzania is among the top five countries with a high burden of sickle cell disease (SCD) in the world. Even though the effects of SCD on quality of life have been documented in other countries including Nigeria and the United States of America, few are known from Tanzania. Therefore, this study focused on evaluating the effects of SCD on the quality of life among children living with SCD and their parents. The study employed a qualitative approach to interview purposively selected parents of children who have lived with SCD and have used hydroxyurea (HU) for more than 3 years. The in-depth interviews were conducted with 11 parents of children with SCD at the Muhimbili University of Health and Allied Sciences (MUHAS) in Dar-es-salaam, Tanzania. A semi-structured interview guide was used. Interviews were audio-recorded, transcribed, and thematically analyzed. Three themes were generated including psycho-social effects: family conflicts and divorce, limited access to education, stress and fear; financial effects: Employment limitation, reduced efficiency and productivity, loss of job and lack of self-keeping expenses; and physical effects: physical disability and dependence, and burden of the frequent crisis. Children living with SCD and their parents suffer psycho-social, financial, and physical impacts of the disease. Appropriate interventions should be introduced to minimize the observed effects as ways of improving the quality of life of the individuals living with SCD and their caregivers.

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Section: Methodsmentioning

confidence: 99%

“…The interviews were conducted by two researchers who are also authors of this article (MK and HJM). Further information regarding the approval, data collection procedures, and how the in-depth interviews were conducted have been explained in our previous published paper [ 10 ].…”

Section: Methodsmentioning

confidence: 99%

The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania

Kilonzi

Mwakawanga

Felician

et al. 2022

IJERPH

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“…Literature shows that some African communities still believe that SCD is caused by evil spirits/witchcraft or misconduct [ 4 , 24 ]. In a recent Tanzanian study, participants believed that SCD is for the poor and is a punishment from God [ 25 ]. Some men believe that males do not carry the sickle cell gene.…”

Section: Myths and Misconceptions About Scd In Ssamentioning

confidence: 99%

“…In Nigeria, for instance, less than 1 percent of an estimated 1.2 million SCD population use HU [ 49 ]. Barriers to HU use range from health system to health providers, patients, and their caregivers ( Figure 3 ) [ 21 , 25 , 136 – 138 ]. Unless HU is made widely available and multidimensional barriers to its use are addressed, families and patients will continue to experience poor quality of life, high medical costs, increased time out of school due to recurrent and prolonged hospitalization, lost family income, and reduced life expectancy [ 139 ].…”

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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“…With this evidence HU is now widely used in developed countries and has greatly improved SCD outcomes. This is, however, not the case in Sub-Sahara Africa (SSA) including Nigeria due to fear of side effects, doubts about efficacy, lack of awareness of benefits and safety, non-availability and high cost among other barriers as reported in some studies across the region [18][19][20][21][22][23][24]. Nigeria through its Federal Ministry of Health, 2014 published guidelines for the management and control of SCD and recommended HU therapy for patients with severe clinical phenotypes [25] yet it has not significantly impacted HU usage as shown in recent studies.…”

Section: Introductionmentioning

confidence: 99%

Determinants of hydroxyurea use among doctors, nurses and sickle cell disease patients in Nigeria

et al. 2022

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Background Hydroxyurea (HU) is an evidence-based therapy that is currently the most effective drug for sickle cell disease (SCD). HU is widely used in high-income countries with consequent reduction of morbidity and mortality. In Nigeria, HU is prescribed by physicians while nurses are mainly involved in counseling the patients to ensure adherence. The extent of utilization and the determinant factors have not been sufficiently evaluated in Nigeria. Objective To assess the frequency of use of HU and factors affecting utilization among healthcare providers, patients, and caregivers for SCD. Methods A questionnaire was administered online and in- person to assess the frequency of HU use and the factors that promote and limit its use. The data were analyzed by descriptive statistics using IBM SPSS software version 23 and the result was presented in frequency tables and percentages. Result A total of 137 physicians, 137 nurses, and 237 patients/caregivers responded to the survey. The rate of prescription of HU by doctors in the past 6 months was 64 (46.7%), 43 (31.4%) nurses provided counseling and 36 (15.6%) patients were on HU. Among doctors, adequate knowledge (91.3%), clinical benefits and safety (94.8%), and inclusion of HU in management guidelines (86.9%) were motivators for prescribing it while inadequate knowledge (60.9%) and unawareness of treatment guidelines (68.6%) constituted barriers. Among nurses, reduction of crisis (91.6%) and safety (64.8%) were the major motivators while barriers were high cost (79.1%) and intensive monitoring (63.1%) of HU treatment. Among the patients, the major motivator was the reduction of crises (80.3%) while poor knowledge (93.2%), high cost of the drug (92.2%) while monitoring (91.2%), non-availability (87.7%) and side effects (83.9%) were the major barriers for the utilization of HU. Conclusion HU prescription and utilization are still poor among healthcare providers and patients. Inadequate knowledge, non-availability and high cost of HU as well as unawareness of treatment guidelines constitute major barriers to prescription and utilization.

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Barriers and Facilitators of Use of Hydroxyurea among Children with Sickle Cell Disease: Experiences of Stakeholders in Tanzania

Cited by 14 publications

References 23 publications

The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania

The Effects of Sickle Cell Disease on the Quality of Life: A Focus on the Untold Experiences of Parents in Tanzania

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

Determinants of hydroxyurea use among doctors, nurses and sickle cell disease patients in Nigeria

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