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

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

BackgroundParkinson’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.ObjectiveThe objective of this study is to determine the frequency, pattern and predictors of cognitive impairments amongst patients with Parkinson’s disease.Materials and methodsThis 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.ResultsThe 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).ConclusionCognitive 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

Misdiagnosis of tuberous sclerosis in a Nigerian girl: A case report and review of literature

Tuberous sclerosis is a rare neuro-cutaneous syndrome, one of the phakomatosis, characterized by facial angiofibromas (adenoma sebaceum), mental retardation and epilepsy. This classic triad occurs in less than one half of patients, probably in one-third, thus requiring a high index of suspicion to diagnose. Consequently it may easily be misdiagnosed as neurofibromatosis or other medical conditions. This is a case report of tuberous sclerosis in a 13-year-old Nigerian girl that was misdiagnosed as neurofibromatosis because of her cutaneous lesions. This paper discussed the case and reviewed the literature. A comprehensive medical clerkship, thorough physical examination, high index of clinical suspicion and neuroimaging investigations are required to confirm diagnosis.Bourneville est un syndrome neuro-cutan\ue9 rare, de la phakomatosis, caract\ue9ris\ue9e par l\u2019angiofibromas du visage (ad\ue9nome sebaceum), retard mental et l\u2019\ue9pilepsie. Ce classique triade se produit au moins de la moiti\ue9 des patients, probablement \ue0 un tiers, n\ue9cessitant ainsi un indice \ue9lev\ue9 de suspicion \ue0 diagnostiquer. Par cons\ue9quent, il peut facilement \ueatre arrive comme Neurofibromatose ou d\u2019autres conditions m\ue9dicales. Il s\u2019agit d\u2019un rapport de cas de Bourneville dans une fille de moins de 13 ans qui \ue9tait arrive comme Neurofibromatose en raison de ses l\ue9sions cutan\ue9es. Ce document discut\ue9 du cas et revue de la litt\ue9rature. Un stage m\ue9dicale compl\ue8te, d\u2019un examen approfondi de la physique, index haute de suspicion clinique et enqu\ueates neuroimaging sont tenus de confirmer le diagnostic

Misdiagnosis of tuberous sclerosis in a Nigerian girl: A case report and review of literature

Tuberous sclerosis is a rare neuro-cutaneous syndrome, one of the phakomatosis, characterized by facial angiofibromas (adenoma sebaceum), mental retardation and epilepsy. This classic triad occurs in less than one half of patients, probably in one-third, thus requiring a high index of suspicion to diagnose. Consequently it may easily be misdiagnosed as neurofibromatosis or other medical conditions. This is a case report of tuberous sclerosis in a 13-year-old Nigerian girl that was misdiagnosed as neurofibromatosis because of her cutaneous lesions. This paper discussed the case and reviewed the literature. A comprehensive medical clerkship, thorough physical examination, high index of clinical suspicion and neuroimaging investigations are required to confirm diagnosis.Bourneville est un syndrome neuro-cutané rare, de la phakomatosis, caractérisée par l’angiofibromas du visage (adénome sebaceum), retard mental et l’épilepsie. Ce classique triade se produit au moins de la moitié des patients, probablement à un tiers, nécessitant ainsi un indice élevé de suspicion à diagnostiquer. Par conséquent, il peut facilement être arrive comme Neurofibromatose ou d’autres conditions médicales. Il s’agit d’un rapport de cas de Bourneville dans une fille de moins de 13 ans qui était arrive comme Neurofibromatose en raison de ses lésions cutanées. Ce document discuté du cas et revue de la littérature. Un stage médicale complète, d’un examen approfondi de la physique, index haute de suspicion clinique et enquêtes neuroimaging sont tenus de confirmer le diagnostic

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

Usefulness of the HIV Dementia Scale in Nigerian patients with HIV/AIDS

Objective: Information on the cognitive complications of HIV/AIDS from sub-Saharan Africa, where statistics on HIV is alarming, is sparse because of lack of validated cognitive tools. This study assessed the usefulness and predictive validity of the HIV Dementia Scale (HDS) as a screening tool among HIV-positive Nigerian Africans. Design: HIV-positive patients were randomly selected over a period of two months. Setting: The HIV/AIDS outpatient clinic of the University teaching hospital, Benin City, Nigeria. Subjects: Asymptomatic and symptomatic HIV-positive patients were compared with age, sex and level of education-matched controls. Outcome measures: Cognitive performances on the modified HIV Dementia scale. Results: The performances of 160 HIV-positive (comprising 80 asymptomatic and 80 symptomatic) subjects were compared with 80 age, sex and level of education-matched HIV-negative subjects on the HDS. The mean HDS scores (maximum =12) were 10.78±1.18 (comparison subjects), 8.85±1.38 (asymptomatic) and 5.2±1.13 (symptomatic);

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