Knowledge and awareness of personal sickle cell genotype among parents of children with sickle cell disease in southeast Nigeria.
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ABSTRACT:
SUBMITTER: Ezenwosu OU
PROVIDER: S-EPMC4567988 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:Background. Sickle cell anaemia (SCA) is an inherited condition whose clinical manifestations arise from the tendency of haemoglobin to polymerize and deform red blood cells into characteristic sickle shape. Allogeneic bone marrow transplantation offers a cure. The aim of this study was to determine the level of awareness, knowledge, and acceptance of this beneficial procedure in Nigeria. Materials and Methods. This multicentre cross-sectional study was conducted in 7 tertiary hospitals in Nigeria in 2015. Approval was obtained from each institution's research and ethics committee. A pretested structured questionnaire was administered to respondents aged 18 years and above and to the parents or guardians of those below 18 years of age. Results. There were 265 respondents comprising 120 males and 145 females. One hundred and seventy-one (64.5%) respondents were aware of BMT for the treatment of SCA. About 67.8% (116 of 171) of those who were aware believed SCA can be cured with BMT (p = 0.001) and 49.7% (85 of 171) of the respondents accepted BMT (p = 0.001). Conclusion. Awareness of BMT in Nigeria is low when compared with reports from developed countries. The knowledge is poor and acceptance is low. With adequate information, improved education, and psychological support, more Nigerians will embrace BMT.
| S-EPMC5059514 | biostudies-literature
Project description:We aimed to (1) describe sickle cell disease (SCD) knowledge and health literacy levels in parents of children with SCD, (2) examine associations with socio-demographic factors and (3) analyse the association with hospital admissions and frequency of occurrence of painful episodes. Parents who presented with their child at routine hospital consultation at the National Sickle Cell Disease Centre in Benin were administered a questionnaire assessing SCD knowledge, health literacy (newest vital sign [NVS]) and socio-demographic and clinical characteristics. In total, 117 parents participated (108, 92.3% females). The predominant SCD genotype was HbSS (79.5%). The average SCD knowledge score was 13.6 (standard deviation [SD] = 2.0). Only 34 (29.1%) participants correctly answered ≥70% of the questions, indicating good knowledge. Health literacy was relatively low (mean NVS score = 3.3; SD = 1.1). SCD knowledge was higher in parents with older children (p = 0.001) and higher education levels (primary, p = 0.010; tertiary, p = 0.036 compared to participants with no formal education). Hospital admissions were more frequent when parents had lower SCD knowledge (p = 0.034) and in parents with younger children (p = 0.039). No associations were found between health literacy and hospital admissions (p = 0.940) and frequency of occurrence of painful episodes (p = 0.224). Continuous disease-specific education for parents of children with SCD may help them better identify and prevent the occurrence of symptoms and decrease the number of hospital admissions.
| S-EPMC10660603 | biostudies-literature
Project description:Toxoplasma gondii is a zoonotic parasite causing high disease burden worldwide. A One Health approach is needed to understand, prevent, and control toxoplasmosis, while knowledge gaps in the One Health aspects have been identified among medical professionals in earlier studies. As a One Health collaboration between veterinary and medical fields, we surveyed the knowledge on toxoplasmosis among medical doctors in Nigeria. The knowledge questions, which the participants answered without consulting literature and colleagues, covered epidemiological One Health aspects as well as clinical interspecialty aspects of T. gondii infections. Altogether 522 medical doctors from four tertiary hospitals completed the questionnaire. The mean number of correct answers in the knowledge questions was 7.5, and 8.4% of the participants selected at least 12 of the 17 correct answers. The proportion of medical doctors scoring such a high score was significantly higher among those who reported having seen a case of clinical toxoplasmosis than in those who did not. While 62% of the medical doctors participating in our study knew that cats can shed T. gondii in their feces, 36% incorrectly suggested that humans could do that too. That T. gondii infection can be meatborne was known by 69%, but that it can be also waterborne only by 28% of the medical doctors participating in our study. Most of the medical doctors, 78%, knew that clinical toxoplasmosis may involve the central nervous system, while only 37% answered that it can involve the eyes. Our results suggested knowledge gaps, which need to be addressed in Continuous Medical Education. The identified gaps included both intersectoral One Health aspects and interspecialty aspects: For prevention and management of toxoplasmosis, knowing the main transmission routes and that the parasite can affect several organs is relevant.
| S-EPMC5736225 | biostudies-literature
Project description:BACKGROUND: Nigeria is one of the major African countries in which incidences of polio infection persist in spite of several eradication efforts. The preponderance of paralytic poliomyelitis particularly in the northern part of Nigeria raises the question as to whether parents of children affected with polio know how polio is contracted and spread, whether having a disabled child affects the parents' attitude towards these children, and what they believe about poliomyelitis in view of their socio-cultural and belief system in the sub-region. Zamfara State, in the north-west of Nigeria is one of the endemic areas where resistance to the global campaign on polio eradication was very high. Therefore this study was conducted to investigate the knowledge, attitudes and beliefs of parents/primary caregivers of children affected with paralytic poliomyelitis in Zamfara State. METHODS: This study is a cross-sectional survey in which the multistage probability sampling technique was used to randomly select two local government areas in Zamfara State where consenting parents/primary caregivers of children with paralytic poliomyelitis were purposively selected. The knowledge, attitudes and beliefs of parents were assessed with the aid of a 4-part 52-item structured researcher administered questionnaire and the data obtained were analyzed. RESULTS: Two hundred and seventeen parents/primary caregivers participated in the study. One hundred and forty-two, (65.4%) reported good, 51 (23.8%) reported fair, while 24 (11%) of participants reported poor knowledge of paralytic poliomyelitis. More respondents 120 (55.3%) showed a positive attitude towards children with paralytic poliomyelitis. Younger age (P=0.016) and paid employment (P=0.020) were positively associated with good knowledge of paralytic poliomyelitis. Female gender (P=0.020), higher educational level (P=0.015), being employed (P=0.010) and having from middle to high household income (P=0.016) were positively associated with a positive attitude toward children with paralytic poliomyelitis. Most respondents showed a reasonable belief over the cause of their children's condition rather than the erroneous traditional belief that paralytic poliomyelitis is caused by spirit forces. CONCLUSIONS: It is of great concern that the good knowledge, positive attitude and reasonable belief by parents/primary caregivers about paralytic poliomyelitis observed in this study did not play a prominent role in preventing susceptibility of children in north-west Nigeria to paralytic poliomyelitis. It is imperative that Nigerian policy makers should device more strategic measures toward the prevention of paralytic poliomyelitis in this sub region.
| S-EPMC3487889 | biostudies-other
Project description:BackgroundParacetamol, also known as acetaminophen, is one of the most common antipyretic and analgesic over-the-counter (OTC) medicines administered to children due to its efficacy, safety, and availability in many pharmaceutical forms, including suppositories, syrup, and drops. Parents frequently administer the wrong dose of paracetamol by mistake for their children, as reported by many previous studies. We aimed in this study to assess parents' knowledge, attitudes, and practice regarding paracetamol dosing and toxicity, as well as their awareness regarding paracetamol-containing products.MethodsThis was a cross-sectional study that targeted parents of children seeking healthcare services at primary health care centers in the Nablus area in the West Bank, Palestine. We used questionnaire-based interviews with parents for data collection.ResultsA total of 300 parents were included in the study. Most of the caregivers surveyed were (87%) females (mothers). About half the parents (50.9%) reported previously using paracetamol as an antipyretic in children under the age of six. A quarter (25.4%) preferred the syrup forms, while 33.8% preferred the suppository dosage form. Medical personnel was the primary source of information for half the caregivers (51.2%). The mean knowledge score about paracetamol was 2.1 (SD = 1.4) out of 6, and the median was 2.0 with an interquartile range of 1.0-3.0. Two hundred seventy-four (95.5%) of the participants scored less than 80% and were considered to have insufficient knowledge. Only 50.9% of parents recognized that paracetamol overdose could result in serious harm.ConclusionsWe found a serious lack of knowledge regarding paracetamol dosing, administration, and potential toxicity among Palestinian parents. We recommend raising awareness regarding this problem among healthcare providers and authorities and working on plans that aim to provide caregivers with accurate and adequate information on dosing, formulation, side effects, and other aspects of paracetamol use, as well as developing effective educational plans targeting healthcare providers, as well as the public.
| S-EPMC7890973 | biostudies-literature
Project description:BackgroundPulmonary hypertension (PHT) is a significant cause of mortality in patients with sickle cell disease (SCD). Few studies on PHT in SCD have been carried out in children. This study aimed to estimate the prevalence of PHT in children with sickle cell anaemia (SCA) and determine its clinical and laboratory correlates.MethodsIn this cross sectional study, evaluation involved obtaining bio-data, history and physical examination findings in 175 SCA subjects with haemoglobin genotype SS aged 5 to 18 years and 175 age and sex matched controls with haemoglobin genotype AA. PHT was determined using peak Tricuspid Regurgitant Velocity (TRV) obtained from echocardiography as a marker. Complete blood count (CBC), lactate dehydrogenase (LDH) assay, reticulocyte count, foetal haemoglobin (HbF) estimation as well as Human Immunodeficiency Virus (HIV) I and II, Hepatitis B Virus (HBV) and Hepatitis C Virus (HCV) screening were done for patients with SCA.ResultsThe mean peak TRV of subjects with SCA and controls was 2.2 ± 0.4 m/s and 1.9 ± 0.3 m/s respectively and prevalence of PHT among children with SCA and controls was 22.9% and 2.3% respectively. PHT in SCA correlated negatively with body mass index, haematocrit and haemoglobin.ConclusionThis study affirms that PHT prevalence is high in children with SCA in Nigeria. Cardiovascular examination for signs of PHT is recommended for children with SCA and if required, further echocardiographic assessment from as early as five years.
| S-EPMC5598958 | biostudies-literature
Project description:The vast majority of children with sickle cell anemia (SCA) live in Africa, where evidence-based guidelines for primary stroke prevention are lacking. In Kano, Nigeria, we conducted a feasibility trial to determine the acceptability of hydroxyurea therapy for primary stroke prevention in children with abnormal transcranial Doppler (TCD) measurements. Children with SCA and abnormal non-imaging TCD measurements (≥200 cm/s) received moderate fixed-dose hydroxyurea therapy (∼20 mg/kg/day). A comparison group of children with TCD measurements <200 cm/s was followed prospectively. Approximately 88% (330 of 375) of families agreed to be screened, while 87% (29 of 33) of those with abnormal TCD measurements, enrolled in the trial. No participant elected to withdraw from the trial. The average mean corpuscular volume increased from 85.7 fl at baseline to 95.5 fl at 24 months (not all of the children who crossed over had a 24 month visit), demonstrating adherence to hydroxyurea. The comparison group consisted of initially 210 children, of which four developed abnormal TCD measurements, and were started on hydroxyurea. None of the monthly research visits were missed (n = total 603 visits). Two and 10 deaths occurred in the treatment and comparison groups, with mortality rates of 2.69 and 1.81 per 100 patient-years, respectively (P = .67). Our results provide strong evidence, for high family recruitment, retention, and adherence rates, to undertake the first randomized controlled trial with hydroxyurea therapy for primary stroke prevention in children with SCA living in Africa.
| S-EPMC5523858 | biostudies-literature
Project description:PurposeThis study aimed to identify determinants influencing the utilization of early intervention services among young children with sickle cell disease (SCD) based on perspectives from medical and early intervention providers.Design and methodsEarly intervention and medical providers from the catchment area surrounding St. Jude Children's Research Hospital and Washington University were recruited (20 total providers). Interviews were completed over the phone and audio recorded. All interviews were transcribed verbatim, coded, and analyzed using inductive thematic analysis.ResultsThree overarching themes were identified from both groups: Awareness (e.g., lack of awareness about the EI system and SCD), Access (e.g., difficulties accessing services), and Communication (e.g., limited communication between medical and early intervention providers, and between providers and families). Although these three themes were shared by medical and early intervention providers, the differing perspectives of each produced subthemes unique to the two professional fields.ConclusionsEarly intervention services can limit the neurodevelopmental deficits experienced by young children with SCD; however, most children with SCD do not receive these services. The perspectives of early intervention and medical providers highlight several potential solutions to increase early intervention utilization among young children with SCD.
| S-EPMC11000123 | biostudies-literature
Project description:BACKGROUND/AIMS:Sickle cell disease (SCD) is a life-threatening, autosomal recessive blood disorder prevalent in sub-Saharan Africa. We identified the prevalence of sickle cell trait (SCT) among pregnant women and their male partners in Enugu State, Nigeria, and determined the accuracy of self-reported sickle cell status and its reliability for identifying high-risk newborns for targeted screening. METHODS:We conducted a nested cohort study of expectant parents enrolled in the Healthy Beginning Initiative (HBI). The HBI is a cluster-randomized trial of a congregation-based approach designed to increase HIV testing. Participants completed a survey regarding self-awareness of their sickle cell genotype and consented to genotype screening by cellulose acetate electrophoresis. RESULTS:SCT prevalence (HbAS) was 22% (746/3,371). Only 50% of participants provided an accurate self-report. Self-report accuracy was significantly different (p < 0.0001) between individuals who reported having SCT or SCD (61% accuracy) versus those who reported not having SCT or SCD (86% accuracy). Demographic variables including gender, age, household size, employment, education, and home location were significantly associated with providing an accurate self-report. CONCLUSIONS:Low numbers of accurate parental self-reports, coupled with a high SCT prevalence in Nigeria, could limit the efficacy of targeted newborn screening. However, our data indicate that it is feasible to integrate sickle cell screening for pregnant women with existing, community-based health care programs developed by the President's Emergency Plan for AIDS Relief (PEPFAR), such as the HBI. Expanding screening programs could enable the development of targeted newborn screening based on maternal genotype that could identify all newborns with SCD in resource-limited settings.
| S-EPMC5052321 | biostudies-literature
Project description:Sickle cell disease (SCD) is one of the most common monogenic diseases in humans with multiple phenotypic expressions that can manifest as both acute and chronic complications. Although described more than a century ago, challenges in comprehensive disease management and collaborative research on this disease are compounded by the complex molecular and clinical phenotypes of SCD, environmental and psychosocial factors, limited therapeutic options and ambiguous terminology. This ambiguous terminology has hampered the integration and interoperability of existing SCD knowledge, and SCD research translation. The SCD Ontology (SCDO), which is a community-driven integrative and universal knowledge representation system for SCD, overcomes this issue by providing a controlled vocabulary developed by a group of experts in both SCD and ontology design. SCDO is the first and most comprehensive standardized human- and machine-readable resource that unambiguously represents terminology and concepts about SCD for researchers, patients and clinicians. It is built around the central concept 'hemoglobinopathy', allowing inclusion of non-SCD haemoglobinopathies, such as thalassaemias, which may interfere with or influence SCD phenotypic manifestations. This collaboratively developed ontology constitutes a comprehensive knowledge management system and standardized terminology of various SCD-related factors. The SCDO will promote interoperability of different research datasets, facilitate seamless data sharing and collaborations, including meta-analyses within the SCD community, and support the development and curation of data-basing and clinical informatics in SCD.
| S-EPMC6878945 | biostudies-literature