Community engagement in genomic research: Proposing a strategic model for effective participation of indigenous communities.

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders' views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities.

A prototype worldwide survey of diagnostic and treatment modalities for stroke.

Stroke is a global health problem. However, very little is known about stroke care in low- to middle-income countries. Obtaining country-specific information could enable us to develop targeted programs to improve stroke care. We surveyed neurologists from 12 countries (Chile, Georgia, Nigeria, Qatar, India, Lithuania, Kazakhstan, Indonesia, Denmark, Brazil, Belgium, and Bangladesh) using a web-based survey tool. Data were analyzed both for individual countries and by income classification (low income, lower middle income, upper middle income, and high income). Six percent (n = 200) of 3123 targeted physicians completed the survey. There was a significant correlation between income classification and access and affordability of head computed tomography scan (ρ = .215, P = .002), transthoracic echocardiogram (ρ = .181, P = .012), extracranial carotid Doppler ultrasound (ρ = .312, P ≤ .000), cardiac telemetry (ρ = .353, P ≤ .000), and stroke treatments such as intravenous thrombolysis (ρ = .276, P ≤ .001), and carotid endarterectomy (ρ = .214, P ≤ .004); stroke quality measures such as venous thromboembolism prophylaxis during hospital stay (ρ = .163, P ≤ .022), discharge from hospital on antithrombotic therapy (ρ = .266, P ≤ .000), consideration for acute thrombolytic therapy (ρ = .358, P ≤ .000), and antithrombotic therapy prescribed by end of hospital day 2 (ρ = .334, P ≤ .000). However, there was no significant correlation between income classification and the access and affordability of antiplatelet agents, vitamin K antagonists and statins, anticoagulation for atrial fibrillation/flutter, statin medication, stroke education, and assessment for rehabilitation. Our study shows that it is possible to get an overview of stroke treatment measures in different countries by conducting an internet-based survey. The generalizability of the findings may be limited by the low survey response rate.

Development and pilot testing of an online module for ethics education based on the Nigerian National Code for Health Research Ethics.

BACKGROUND: The formulation and implementation of national ethical regulations to protect research participants is fundamental to ethical conduct of research. Ethics education and capacity are inadequate in developing African countries. This study was designed to develop a module for online training in research ethics based on the Nigerian National Code of Health Research Ethics and assess its ease of use and reliability among biomedical researchers in Nigeria. METHODOLOGY: This was a three-phased evaluation study. Phase one involved development of an online training module based on the Nigerian Code of Health Research Ethics (NCHRE) and uploading it to the Collaborative Institutional Training Initiative (CITI) website while the second phase entailed the evaluation of the module for comprehensibility, readability and ease of use by 45 Nigerian biomedical researchers. The third phase involved modification and re-evaluation of the module by 30 Nigerian biomedical researchers and determination of test-retest reliability of the module using Cronbach's alpha. RESULTS: The online module was easily accessible and comprehensible to 95% of study participants. There were significant differences in the pretest and posttest scores of study participants during the evaluation of the online module (p = 0.001) with correlation coefficients of 0.9 and 0.8 for the pretest and posttest scores respectively. The module also demonstrated excellent test-retest reliability and internal consistency as shown by Cronbach's alpha coefficients of 0.92 and 0.84 for the pretest and posttest respectively. CONCLUSION: The module based on the Nigerian Code was developed, tested and made available online as a valuable tool for training in cultural and societal relevant ethical principles to orient national and international biomedical researchers working in Nigeria. It would complement other general research ethics and Good Clinical Practice modules. Participants suggested that awareness of the online module should be increased through seminars, advertisement on government websites and portals used by Nigerian biomedical researchers, and incorporation of the Code into the undergraduate medical training curriculum.

Frequency, pattern and predictors of cognitive impairments in patients with Parkinson's disease using the Community Screening Instrument for Dementia.

Background: Parkinson's disease (PD) is a chronic neurodegenerative disorder complicated by cognitive dysfunctions which are associated with increased caregiver burden, pressure on community health facilities, and mortality in affected patients. Most of the data concerning cognitive dysfunctions in PD are from studies conducted in Europe and North America, but there is paucity of data from Sub-Saharan Africa. Objective: The objective of this study is to determine the frequency, pattern and predictors of cognitive impairments amongst patients with Parkinson's disease. Materials and methods: This was a cross sectional case control study carried out at a tertiary health facility in South-south Nigeria. Participants with PD were consecutively recruited from the neurology outpatient clinics. Demographic and disease-specific data were obtained with the use of a pre-tested questionnaire. Cognitive performance of thirty patients with PD were compared with thirty demographically matched controls using the Community Screening Instrument for Dementia (CSID). CSID was already validated among Nigerians. Results: The frequency of cognitive impairment using the CSID was 50% for PD patients (3.3% for controls). Poor cognitive performance was observed across several cognitive domains including language, executive dysfunction, psychomotor speed, and constructional apraxia among PD patients. The independent predictors of the overall cognitive impairment in patients with PD determined by logistic regression analysis include recall deficiency (p = 0.007), impairment with naming (p = 0.044), apraxia (p = 0.003), Hoen&Yahr staging (p = 0.046), UPDRS score (p = 0.015) and age at presentation (p = 0.014). Conclusion: Cognitive impairments occur more frequently in patients with PD compared to controls. This study also demonstrated the predictive role of severity of disease based on Hoehn &Yahr staging and UPDRS score, and presence of recall deficiency, poor naming ability and apraxia.

Depressive symptoms in patients with epilepsy: analysis of self-rating and physician's assessment.

BACKGROUND: Depression has significant negative impact on the quality of life in patients with epilepsy (PWE). AIM: This study assessed the prevalence of depression in PWE and the impact of seizure variables on the depression scores. SETTINGS AND DESIGN: A case-control study of randomly selected PWE attending a tertiary hospital in a metropolitan, Nigeria. MATERIALS AND METHODS: A total of 152 randomly selected subjects the Beck Depression Inventory (BDI) for quantitative assessment of depression, while the Hamilton Rating Scale for Depression (HRSD) was used by the investigators. STATISTICAL ANALYSIS: The Student t test assessed statistical significance of differences in the BDI and HRSD scores, whereas the scores were correlated with Pearson's correlation coefficient. Logistic regression analysis and Chi-square test for trend assessed the impact of seizure variables on the scores. The level of significance was taken as P < 0.05. RESULTS: The prevalence of depressive symptoms was 42% and 45% using the HRSD and BDI, respectively, with significant differences in the scores of the patients and controls on the both scales (P < 0.001). The PWE scores on both scales yielded a correlation coefficient of 0.8 indicating their utility in detecting depressive symptoms. Seizure control was the most potent predictor of depression (HRSD: P = 0.004; BDI: P = 0.001). CONCLUSIONS: Depressive symptoms are common in epilepsy. Early detection and prompt management are recommended. Good seizure control with an appropriate antiepileptic drug, among other interventional measures, may contribute to the prevention of depression in epilepsy.

Genomic Literacy and Awareness of Ethical Guidance for Genomic Research in Sub-Saharan Africa: How Prepared Are Biomedical Researchers?

Achieving the objectives of rolling out genomic research programs in sub-Saharan Africa depends on how prepared indigenous biomedical researchers are for this type of research. We explored the level of preparedness of biomedical researchers in a sub-Saharan African country using in-depth interviews to obtain data on their understanding of genomics and genomic research and assess their awareness of the scope of the country's code of health research ethics. Thirty biomedical researchers were interviewed. Only eight were familiar with concepts of genomics, a form of "genomic health literacy." The majority were not aware of the country's code of research ethics. This study showed that generally biomedical researchers were not genomic health literate, unaware of the code and its limitations as a source of ethical guidance for the conduct of genomic research. These findings underscore the need for educational training in genomics and creating awareness of ethical oversight for genomic research in sub-Saharan Africa.

Seizure frequency and risk of cognitive impairment in people living with epilepsy in a sub-urban community in South Eastern Nigeria.

This study is aimed at assessing the impact of seizure frequency on the cognitive performance of epileptic adult patients in a rural community in South Eastern Nigeria. A total of 51 patients with epilepsy (33 males and 18 females) with a mean age of 30.7 ±â€¯12.1 years and 51 age and sex matched controls participated in this study. The cognitive performances of the people with epilepsy and controls were assessed using the Community Screening Interview for Dementia (CSID) and the computerized cognitive assessment test battery, the FePsy. The control group performed better in almost all the neurocognitive tests compared with the low seizure frequency (LSF) and high seizure frequency (HSF) groups. Analysis of covariance revealed that patients with LSF performed better (p = 0.04) in visual reaction time - dominant hand (VRT-D) compared with the HSF group. There was lack of significant differences in mean total CSID scores and mean sub-total scores for language, memory, orientation, attention, constructional praxis, auditory reaction time-dominant hand and non-dominant hand, VRT - non-dominant hand and figure recognition. HSF patients indicated significantly greater prevalence (80% vs. 20%; p = 0.020) and risk (OR, 8.0; 95% CI, 1.8-33.8)) of memory impairment, but not in the other neurocognitive domains compared with the LSF group. In conclusion, the present study indicated that adults with epilepsy performed poorly in a wide range of neurocognitive variables compared with the controls. However, no significant adverse effects of high seizure frequency were observed on almost all the neurocognitive variables.

Serum lipids in patients with stroke--a cross-sectional case-control study.

BACKGROUND: Vascular disease remains the prime contributor to the pathogenesis of stroke, but dyslipidemia has not been clearly established as a risk factor for stroke the same way it has been for coronary artery disease. There is no case-controlled study on the contribution of serum lipids to stroke in Nigerians. This study aimed at assessing the possibility of serum lipids as risk factor for stroke in Nigerian patients. METHOD: The demography, blood pressure, fasting plasma glucose and fasting serum lipids of 87 consecutive patients with first-ever stroke managed at the University of Benin teaching hospital between January and December 2005 were analyzed and compared with those of age- and sex-matched controls. RESULTS: Eighty-seven stroke patients (55 males and 32 females; mean age 61.25 +/- 14.77 years) were compared with age- and sex-matched controls. Ischemic stroke constituted 64.37%, while the rest had hemorrhagic stroke. There were no significant differences in the serum cholesterol, HDL-C and LDL-C levels of stroke patients and controls (p > 0.05), but the serum triglyceride level was higher among the stroke patients (p < 0.001) with a significant relative risk (RR = 1.77; p < 0.01). CONCLUSION: In this cross-sectional case-control study, there is no significant difference in the serum lipids of Nigerian patients with stroke with the exception of serum triglyceride, which seems to confer significant stroke risk.

Correction: Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting.

[This corrects the article DOI: 10.1371/journal.pone.0195171.].

Relative solidarity: Conceptualising communal participation in genomic research among potential research participants in a developing Sub-Saharan African setting.

OBJECTIVE: As genomic research gathers momentum in sub-Saharan Africa, it has become increasingly important to understand the reasons why individuals wish to participate in this kind of medical research. Against the background of communitarianism conceived as typical of African communities, it is often suggested that individuals consent to participate on the grounds of solidarity and to further the common good. In this paper, we seek to explore this contention by presenting data from focus groups with potential research participants about what would influence their decisions to participate in genomic research. METHODS AND RESULTS: These focus groups were conducted as part of a larger qualitative study with a purposively selected group of participants from a community situated in south west Nigeria. We conducted fifteen focus group sessions comprising 50 participants organized by age and sex, namely: 1) adult (>30 years) males, 2) adult females, 3) youth (18-30 years) males, and 4) youth females. A mixed age-group was conducted to probe different views between the age groups. There was discordance and clear division between the adults and youths regarding the decision to participate in genomic research based on commitment to communal values. Adults based their decision to participate on altruism and furthering the common good while youths based their decisions on personal benefits and preferences and also took into account the views and welfare of family members and neighbours. CONCLUSIONS: This discordance suggests a 'generational shift' and we advance a model of 'relative solidarity' among the youths, which is different from the communal solidarity model typical of African communitarianism. Our findings suggest the need for a closer look at strategies for implementation of community engagement and informed consent in genomic research in this region, and we recommend further studies to explore this emerging trend.

Memory performance in HIV/AIDS--a prospective case control study.

BACKGROUND: Memory impairment, usually impaired retrieval of information, has been described in HIV/AIDS, especially among those with severe illness. Neuro-cognitive disturbances in HIV/AIDS have been linked to poor quality of life and medication adherence. This prospective, case-control study was designed to assess the verbal and non-verbal memory as well as the attention abilities of Nigerian Africans with HIV/AIDS and correlate their performances with their CD4+ T lymphocytes (CD4+) counts. METHODS: A total of 288 randomly selected subjects, comprising 96 HIV-positive symptomatic patients, 96 HIV-positive asymptomatic patients and 96 HIV-negative controls, participated in the study. The subjects were age-, sex-, and level of education matched. The Recognition Memory Test and Choice Reaction Time tasks, components of the computer-assisted neuropsychological tests battery- the Iron Psychology 'FePsy' were used for cognitive assessments. RESULTS: The mean memory scores of the HIV-positive asymptomatic subjects did not differ significantly from the controls (p > 0.05) but the HIV-positive symptomatic subjects' scores were significantly lower than the controls (p < 0.05). Both HIV-positive groups had psychomotor slowing and impaired attention (p < 0.05). The HIV-positive subjects with CD4+ counts < 200/microl and between 200 and 499/microl had significant memory impairment (p < 0.001 and p < 0.001 respectively) but there was no significant impairment among those with count > or = 500/microl. Impaired ability for sustained attention was however present irrespective of the CD4+ level relative to controls (p < 0.001). CONCLUSIONS: We concluded that there was no significant memory disturbance among HIV-positive asymptomatic subjects despite the presence of impaired attention and psychomotor slowing, and that the severity of immune suppression (as indicated by the CD4+ T lymphocytes count) is a strong determinant of cognitive decline in HIV/AIDS.

Effect of progression of disease on cognitive performance in HIV/AIDS.

BACKGROUND: HIV infection causes a range of cognitive and behavioral symptoms that become more frequent and severe as the immune system deteriorates and symptomatic illness ensues. OBJECTIVE: To determine the impact of disease progression on cognitive abilities of Nigerian Africans who present in the HIV/AIDS clinic of the University Teaching Hospital, Benin City, Nigeria, using the CD4 levels as the measure of disease progression. METHODS: A total of 288 subjects comprising 96 randomly selected symptomatic AIDS patients, 96 randomly selected asymptomatic HIV-positive patients and 96 HIV-negative controls participated in the study. Enzyme-linked immunosorbent assay (ELISA) method was used to detect HIV infection, and CD4 levels were obtained for all subjects. The Community Screening Interview for Dementia (CSI 'D') was used to assess cognitive performance of subjects. Subjects were matched for age, sex and level of education. RESULTS: Each category of subjects comprised 48 males and 48 females. The mean ages were 32.94 +/- 8.0 years, 31.47 +/- 6.7 years and 33.56 +/- 7.1 years for the controls, asymptomoatic HIV-positive and symptomatic AIDS subjects respectively (p = 0.127). The mean CD4 levels were 684 +/- 44/microL (controls), 284 +/- 62/microL (asymptomatic HIV positive) and 142 +/- 36/microL (symptomatic AIDS). The mean CS1 'D' scores were 66.46 +/- 1.90 (controls), 66.31 +/- 2.14 (asymptomatic HIV positive) and 56.62 +/- 4.23 (symptomatic AIDS). CONCLUSION: Cognitive abilities of HIV/AIDS patients decline as the disease progresses. This is reflected in the cognitive performances of the symptomatic AIDS patients. The lower the CD4 levels, the worse the cognitive deficits. There was, however, no significant difference in the performance of asymptomatic HIV-positive patients and the controls.

Knowledge of the Nigerian Code of Health Research Ethics Among Biomedical Researchers in Southern Nigeria.

Responsibility for protection of research participants from harm and exploitation rests on Research Ethics Committees and principal investigators. The Nigerian National Code of Health Research Ethics defines responsibilities of stakeholders in research so its knowledge among researchers will likely aid ethical conduct of research. The levels of awareness and knowledge of the Code among biomedical researchers in southern Nigerian research institutions was assessed. Four institutions were selected using a stratified random sampling technique. Research participants were selected by purposive sampling and completed a pre-tested structured questionnaire. A total of 102 biomedical researchers completed the questionnaires. Thirty percent of the participants were aware of the National Code though 64% had attended at least one training seminar in research ethics. Twenty-five percent had a fairly acceptable knowledge (scores 50%-74%) and 10% had excellent knowledge of the code (score ≥75%). Ninety-five percent expressed intentions to learn more about the National Code and agreed that it is highly relevant to the ethical conduct of research. Awareness and knowledge of the Code were found to be very limited among biomedical researchers in southern Nigeria. There is need to improve awareness and knowledge through ethics seminars and training. Use of existing Nigeria-specific online training resources is also encouraged.

A community-based case-control study of prevalence and pattern of cognitive impairments in patients with epilepsy residing in South-Eastern Nigeria.

BACKGROUND: Epilepsy is the commonest neurological disorder encountered in Sub-Saharan Africa. The quality of life of patients with epilepsy (PWEs) is adversely affected by cognitive impairments. AIM: This study investigated the prevalence and pattern of cognitive impairments in PWE in Ukpo community located in a South-Eastern state in Nigeria using Community Screening Interview for Dementia (CSID) and a computer-assisted cognitive test battery (FePsy). METHODS AND PATIENTS: Fifty-one PWEs were studied and compared with 51 age-, sex-and level of education-matched healthy controls. Diagnosis of epilepsy was confirmed clinically with eye-witness corroboration. Sociodemographic data and information on epilepsy variables were obtained with the aid of a questionnaire. Cognitive domains assessed include language, memory, orientation, attention, psychomotor speed and constructional praxis. RESULTS: The prevalence rate of cognitive impairment using total CSID score was 19.6%. Analysis of CSID scores revealed significant impairment in language (17.6%), memory (29.4%), orientation (15.7%), attention (7.8%) and constructional praxis (15.7%) compared to healthy controls. A similar pattern was observed with FePsy but with better sensitivity indices for detecting cognitive impairment. CONCLUSION: This study indicated significant prevalence rate of cognitive impairment among treatment-naïve PWE with profound affectation of memory, mental speed and language. In addition, the FePsy was found to be more sensitive and specific in assessment of cognitive function in PWE.

Cognitive function in patients with newly diagnosed HIV infection in a tertiary health facility in south - west Nigeria: Assessment using computer-assisted neuropsychological test battery.

INTRODUCTION: Cognitive dysfunction is common among patients with human immunodeficiency virus (HIV) infection however there are few reports from sub-Saharan Africa. METHODS: We studied fifty seropositive patients with human immunodeficiency virus (HIV) infection along with fifty matched seronegative control. Medical history taking and general physical and neurological examinations were done for all study participants. Laboratory evaluations and chest X-ray were done for all the patients. The cognitive function was done with the aid of 'Fepsy' automated test battery for all the study participants. The data was analyzed with statistical package for social sciences software version 21.0 (SPSS Chicago IL). RESULT: About 70% of the HIV patients were in advanced disease stage. The auditory and visual reaction times, binary choice reaction times, and computerized visual scanning task time were more prolonged in the HIV group (p < 0.05). There were also increased memory accuracy and binary choice task accuracy in the HIV group (p < 0.05). However the vigilance task performance was similar between the two groups (p > 0.05). Among the patients with HIV infection, the presence of anemia and central nervous system toxoplasmosis infection was associated with prolonged auditory and visual reaction times. CONCLUSION: There was a high rate of cognitive dysfunction in patients with HIV infection in this study.

Prevalence and determinants of cognitive impairment in patients with chronic kidney disease: a cross-sectional study in Benin City, Nigeria.

BACKGROUND: Chronic kidney disease (CKD) has become a public health concern and may be complicated by cognitive impairment (CI) contributing significantly to morbidity and poor prognosis. This hospital-based study aimed at determining the prevalence and the determinants of CI among CKD patients in Nigeria. MATERIALS AND METHODS: A total of 190 CKD patients and a 100 healthy control subjects completed this cross-sectional study. Sociodemographic data and history of common clinical features of CKD were obtained with the use of interviewer administered semi-structured questionnaires. The six-item cognitive impairment test was used for assessment of cognitive function of patients and controls. RESULTS: The prevalence of CI in Stages 3, 4, and 5 CKD patients were 24.0%, 41.6%, and 46.2%, respectively with overall prevalence of 35.3% while only 6.0% of controls had CI (P = 0.03). The most potent determinants of CI were low hematocrit (odds ratio [OR] =3.50), low serum bicarbonate levels (OR = 2.20), and high serum urea (OR = 2.11). CONCLUSION: CKD is associated with significant CI in Nigerian patients especially with progressive deterioration in renal function. There is a need for regular evaluation of CKD patients for cognitive deficits.

Sleep disturbances among patients with epilepsy in Nigeria.

BACKGROUND: There is a complex inter-relationship between sleep disorders and epilepsy, and there are few studies in Nigeria on sleep disorders in epilepsy. This study was carried out to determine the prevalence, pattern and predictors of sleep disturbances among persons with epilepsy (PWE). MATERIALS AND METHODS: This was a multi-center, cross-sectional study of 124 PWE in Nigeria. A questionnaire was used to collect data on social and demographic variables, epilepsy- related variables and sleep disturbances in PWE. Exclusion criteria were mental retardation, and use of sedative drugs. The data was analyzed using Statistical Package for Social Sciences version 11.0 and P < 0.05 was considered as significant. RESULTS: There were 77 males and 47 females with a mean age of 33.4 ± 13.1 years. The mean age of seizure onset was 23.7 ± 14.6 years, while the mean duration of epilepsy was 9.5 ± 9.4 years. The commonest type of epilepsy was secondarily generalized tonic-clonic seizures (62%). The prevalence of sleep disorders in PWE was 82%. Parasomnias occurred in 46%, followed by obstructive sleep apnea in 23%, insomnia (19%) excessive daytime sleepiness (EDS) (17%), and restless leg syndrome (11%). None of the socio-demographic or epilepsy- related variables was predictive of EDS or parasomnias in PWE (P > 0.05). CONCLUSION: There is a high frequency of sleep disorders among PWE. Clinicians should screen PWE for sleep disturbances.

Intellectual Impairment in Patients with Newly Diagnosed HIV Infection in Southwestern Nigeria.

Neurocognitive impairment is a detrimental complication of HIV infection. Here, we characterized the intellectual performance of patients with newly diagnosed HIV infection in southwestern Nigeria. We conducted a prospective study at Owo Federal Medical Center by using the adapted Wechsler Adult Intelligence Scale (WAIS). The raw scores were converted to standardized scores (z-scores) and correlated with clinical and laboratory findings. Fifty-eight HIV positive patients were recruited; 72% were in WHO stages 3 and 4. We detected a high rate of intellectual impairment in HIV positive patients and controls (63.8% and 10%, resp.; P < 0.001). HIV positive patients performed worse throughout the subtests of both verbal and performance intelligence quotients. Presence of opportunistic infections was associated with worse performance in the similarities and digit symbol tests and performance and full scale scores. Lower body weight correlated with poor performance in different WAIS subtests. The high rate of advanced disease stage warrants measures aimed at earlier diagnosis and treatment. Assessment of neurocognitive performance at diagnosis may offer the opportunity to improve functioning in daily life and counteract disease progression.