38 results found
Anie KA, Olayemi E, Paintsil V, et al., 2021, Sickle cell disease genomics of Africa (SickleGenAfrica) network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria, and Tanzania, BMJ Open, Vol: 11, ISSN: 2044-6055
ObjectivesTo provide lay information about genetics and sickle cell disease (SCD), and to identify and address ethical issues concerning SickleGenAfrica covering autonomy and research decision-making, risk of SCD complications and organ damage, returning of genomic findings, biorepository, data sharing, and healthcare provision for patients with SCD.DesignFocus groups utilising qualitative methods.SettingSix cities in Ghana, Nigeria, and Tanzania within communities and secondary care.ParticipantsPatients, parents/caregivers, healthcare professionals, community leaders, and government healthcare representatives. ResultsResults from 112 participants revealed similar sensitivities and aspirations around genomic research, an inclination towards autonomous decision-making for research, concerns about bio-banking, anonymity in data sharing, and a preference for receiving individual genomic results. Furthermore, inadequate healthcare for patients with SCD was emphasised.ConclusionsOur findings revealed the eagerness of patients and parents/caregivers to participate in genomics research in Africa, with advice from community leaders and reassurance from health professionals and policy-makers, despite their apprehensions regarding healthcare systems.
Inusa BPD, Jacob E, Dogara L, et al., 2021, Racial inequalities in access to care for young people living with pain due to sickle cell disease, LANCET CHILD & ADOLESCENT HEALTH, Vol: 5, Pages: 7-9, ISSN: 2352-4642
Layton D, Piel F, Telfer P, 2020, Real-time national survey of COVID-19 in hemoglobinopathy and rare inherited anemia patients, Haematologica: the hematology journal, Vol: 105, Pages: 2651-2654, ISSN: 0390-6078
Chinegwundoh FI, Smith S, Anie KA, 2020, Treatments for priapism in boys and men with sickle cell disease., Cochrane Database Syst Rev, Vol: 4, Pages: CD004198-CD004198
BACKGROUND: Sickle cell disease comprises a group of genetic haemoglobin disorders. The predominant symptom associated with sickle cell disease is pain resulting from the occlusion of small blood vessels by abnormally 'sickle-shaped' red blood cells. There are other complications, including chronic organ damage and prolonged painful erection of the penis, known as priapism. Severity of sickle cell disease is variable, and treatment is usually symptomatic. Priapism affects up to half of all men with sickle cell disease, however, there is no consistency in treatment. We therefore need to know the best way of treating this complication in order to offer an effective interventional approach to all affected individuals. This is an update of a previously published review. OBJECTIVES: To assess the benefits and risks of different treatments for stuttering (repeated short episodes) and fulminant (lasting for six hours or more) priapism in sickle cell disease. SEARCH METHODS: We searched the Cochrane Cystic Fibrosis and Genetic Disorders Group Haemoglobinopathies Trials Register, which comprises references identified from comprehensive electronic database searches and handsearches of relevant journals and abstract books of conference proceedings. We also searched trial registries. Date of the most recent search of the Group's Haemoglobinopathies Trials Register: 09 September 2019. Date of most recent search of trial registries and of Embase: 01 October 2019. SELECTION CRITERIA: All randomised or quasi-randomised controlled trials comparing non-surgical or surgical treatment with placebo or no treatment, or with another intervention for stuttering or fulminant priapism. DATA COLLECTION AND ANALYSIS: The authors independently extracted data and assessed the risk of bias of the trials. MAIN RESULTS: Three trials with 102 participants were identified and met the criteria for inclusion in this review. These trials compared stilboestrol to placebo, sildenafil to placebo and a four
Adekile A, Anie KA, Ben Hamda C, et al., 2019, The Sickle Cell Disease Ontology: enabling universal sickle cell-based knowledge representation, DATABASE-THE JOURNAL OF BIOLOGICAL DATABASES AND CURATION, ISSN: 1758-0463
Inusa BPD, Hsu LL, Kohli N, et al., 2019, Sickle Cell Disease-Genetics, Pathophysiology, Clinical Presentation and Treatment, INTERNATIONAL JOURNAL OF NEONATAL SCREENING, Vol: 5
Dennis-Antwi JA, Ohene-Frempong K, Anie KA, et al., 2019, Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana, JOURNAL OF GENETIC COUNSELING, Vol: 28, Pages: 102-118, ISSN: 1059-7700
Inusa BPD, Anie KA, Lamont A, et al., 2018, Utilising the 'Getting to Outcomes (R)' Framework in Community Engagement for Development and Implementation of Sickle Cell Disease Newborn Screening in Kaduna State, Nigeria, INTERNATIONAL JOURNAL OF NEONATAL SCREENING, Vol: 4
Anie KA, Paintsil V, Owusu-Dabo E, et al., 2017, Organ damage in sickle cell disease study (ORDISS): protocol for a longitudinal cohort study based in Ghana, BMJ Open, Vol: 7, ISSN: 2044-6055
Introduction Sickle cell disease is highly prevalent in Africa with a significant public health burden. Nonetheless, morbidity and mortality in sickle cell disease that result from the progression of organ damage is not well understood. The Organ Damage in Sickle Cell Disease Study (ORDISS) is designed as a longitudinal cohort study to provide critical insight into cellular and molecular pathogenesis of chronic organ damage for the development of future innovative treatment.Methods and analysis ORDISS aims to recruit children aged 0–15 years who attend the Kumasi Centre for Sickle Cell Disease based at the Komfo Anokye Teaching Hospital in Kumasi, Ghana. Consent is obtained to collect blood and urine samples from the children during specified clinic visits and hospitalisations for acute events, to identify candidate and genetic markers of specific organ dysfunction and end-organ damage, over a 3 year period. In addition, data concerning clinical history and complications associated with sickle cell disease are collected. Samples are stored in biorepositories and analysed at the Kumasi Centre for Collaborative Research in Tropical Medicine, Ghana and the Centre for Translational and International Haematology, University of Pittsburgh, USA. Appropriate statistical analyses will be performed on the data acquired.Ethics and dissemination Research ethics approval was obtained at all participating sites. Results of the study will be submitted for publication in peer-reviewed journals, and the key findings presented at national and international conferences.
Chinegwundoh FI, Smith S, Anie KA, 2017, Treatments for priapismin boys andmen with sickle cell disease, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X
Cho G, Anie KA, Buckton J, et al., 2016, SWIM (sickle with ibuprofen and morphine) randomised controlled trial fails to recruit: lessons learnt, BMJ Open, Vol: 6, ISSN: 2044-6055
ObjectivesSickle With Ibuprofen and Morphine (SWIM) Trial was designed to assess whether co-administration of ibuprofen (a non-steroidal anti-inflammatory drug) resulted in a reduction of opioid consumption delivered by patient controlled analgesia (PCA) for acute pain in sickle cell disease.DesignA randomised, placebo-controlled, double-blind trial.SettingUnited Kingdom multicentre trial in acute hospital setting.ParticipantsAdults with sickle cell disease of any gender and phenotype aged 16 years and over.InterventionsOral ibuprofen at a dose of 800mg three times daily or placebo in addition to opioids (morphine or diamorphine) administered via PCA pump for up to four days.Main outcome measuresThe primary outcome measure was opioid consumption over 4 days following randomisation.ResultsThe SWIM trial closed early because it failed to randomise to its target of 316 patients within a reasonable time.ConclusionsThe key issues identified include the unanticipated length of time between informed consent and randomisation, difficulties in randomisation of patients in busy emergency departments, availability of trained staff at weekends and out of hours, fewer centres than expected using PCA routinely for sickle cell pain treatment, lack of research staff and support for participation, and the trial design. There are implications for future UK trials in sickle cell disease.
Anie KA, Treadwell MJ, Grant AM, et al., 2016, Community Engagement to Inform the Development of a Sickle Cell Counselor Training and Certification Program in Ghana, Journal of Community Genetics, Vol: 7, Pages: 195-202, ISSN: 1868-310X
Sickle cell disease (SCD) and sickle cell trait (SCT) are highly prevalent in Africa. Despite public health implications, there is limited understanding of community issues for implementing newborn screening and appropriate family counseling. We conducted a three-day workshop in Kumasi, Ghana, with community leaders as lay program development advisors to assist the development and implementation of a Sickle Cell Counselor Training and Certification Program. We employed qualitative methods to understand cultural, religious and psychosocial dimensions of SCD and SCT, including the advisors’ attitudes and beliefs in relation to developing a culturally sensitive approach to family education and counseling that is maximally suited to diverse communities in Ghana. We collated advisors’ discussions and observations in order to understand community issues, potential challenges, and guide strategies for advocacy in SCD family education and counseling. Results from the workshop revealed that community leaders representing diverse communities in Ghana were engaged constructively in discussions about developing a culturally sensitive counselor training program. Key findings included the importance of improved knowledge about SCD among the public and youth in particular, the value of stakeholders such as elders, religious and traditional leaders, and government expectations of reduced SCD births. We submitted a report to the Ministry of Health in Ghana with recommendations for the next steps in developing a national sickle cell counselor training program. We named the program ‘Genetic Education and Counseling for Sickle Cell Conditions in Ghana’ (GENECIS-Ghana). The first GENECIS-Ghana Training and Certification Program Workshop was conducted from June 8th to 12th, 2015.
Mulder N, Nembaware V, Adekile A, et al., 2016, Proceedings of a Sickle Cell Disease Ontology workshop - Towards the first comprehensive ontology for Sickle Cell Disease, Applied and Translational Genomics, Vol: 9, Pages: 23-29, ISSN: 2212-0661
Sickle cell disease (SCD) is a debilitating single gene disorder caused by a single point mutation that results in physical deformation (i.e. sickling) of erythrocytes at reduced oxygen tensions. Up to 75% of SCD in newborns world-wide occurs in sub-Saharan Africa, where neonatal and childhood mortality from sickle cell related complications is high. While SCD research across the globe is tackling the disease on multiple fronts, advances have yet to significantly impact on the health and quality of life of SCD patients, due to lack of coordination of these disparate efforts. Ensuring data across studies is directly comparable through standardization is a necessary step towards realizing this goal. Such a standardization requires the development and implementation of a disease-specific ontology for SCD that is applicable globally. Ontology development is best achieved by bringing together experts in the domain to contribute their knowledge. The SCD community and H3ABioNet members joined forces at a recent SCD Ontology workshop to develop an ontology covering aspects of SCD under the classes: phenotype, diagnostics, therapeutics, quality of life, disease modifiers and disease stage. The aim of the workshop was for participants to contribute their expertise to development of the structure and contents of the SCD ontology. Here we describe the proceedings of the Sickle Cell Disease Ontology Workshop held in Cape Town South Africa in February 2016 and its outcomes. The objective of the workshop was to bring together experts in SCD from around the world to contribute their expertise to the development of various aspects of the SCD ontology.
Treadwell MJ, Anie KA, Grant AM, et al., 2015, Using Formative Research to Develop a Counselor Training Program for Newborn Screening in Ghana, JOURNAL OF GENETIC COUNSELING, Vol: 24, Pages: 267-277, ISSN: 1059-7700
Anie KA, Green J, 2015, Psychological therapies for sickle cell disease and pain, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X
Anie KA, Massaglia P, 2014, Psychological therapies for thalassaemia, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X
Cabrita IZ, Mohammed A, Layton M, et al., 2013, The association between tricuspid regurgitation velocity and 5-year survival in a North West London population of patients with sickle cell disease in the United Kingdom, BRITISH JOURNAL OF HAEMATOLOGY, Vol: 162, Pages: 400-408, ISSN: 0007-1048
Anie KA, Green J, 2012, Psychological therapies for sickle cell disease and pain, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X
Anie KA, Grocott H, White L, et al., 2012, Patient self-assessment of hospital pain, mood and health-related quality of life in adults with sickle cell disease, BMJ OPEN, Vol: 2, ISSN: 2044-6055
Olujohungbe AB, Adeyoju A, Yardumian A, et al., 2011, A Prospective Diary Study of Stuttering Priapism in Adolescents and Young Men With Sickle Cell Anemia: Report of an International Randomized Control Trial-The Priapism in Sickle Cell Study, JOURNAL OF ANDROLOGY, Vol: 32, Pages: 375-382, ISSN: 0196-3635
Hulbert ML, McKinstry RC, Lacey JL, et al., 2011, Silent cerebral infarcts occur despite regular blood transfusion therapy after first strokes in children with sickle cell disease, BLOOD, Vol: 117, Pages: 772-779, ISSN: 0006-4971
Anie KA, Egunjobi FE, Akinyanju OO, 2010, Psychosocial impact of sickle cell disorder: perspectives from a Nigerian setting, GLOBALIZATION AND HEALTH, Vol: 6
Anie KA, Dasgupta T, Ezenduka P, et al., 2007, A cross-cultural study of psychosocial aspects of sickle cell disease in the UK and Nigeria., Psychol Health Med, Vol: 12, Pages: 299-304, ISSN: 1354-8506
Pain experience, health service utilization and psychological coping in adult patients with sickle cell disease were compared cross-culturally between the UK and Nigeria. Patients in the UK experienced a significantly greater number of pain episodes and of longer duration, with more frequent visits to accident and emergency departments compared with those in Nigeria. The Nigerian patients, on the other hand, applied more psychologically active coping strategies such as distraction to deal with their sickle cell pain in the community. These significant differences are explained in relation to external health locus of control factors including beliefs, and the cost of healthcare in relation to the use of health services. Clinical implications of these findings are also considered.
Howard J, Anie KA, Holdcroft A, et al., 2005, Cannabis use in sickle cell disease: a questionnaire study, BRITISH JOURNAL OF HAEMATOLOGY, Vol: 131, Pages: 123-128, ISSN: 0007-1048
Anie KA, 2005, Psychological complications in sickle cell disease, BRITISH JOURNAL OF HAEMATOLOGY, Vol: 129, Pages: 723-729, ISSN: 0007-1048
Anie KA, Telfair J, Sickle Cell Disease Transition Study Working Group, 2005, Multi-site study of transition in adolescents with sickle cell disease in the United Kingdom and the United States., Int J Adolesc Med Health, Vol: 17, Pages: 169-178, ISSN: 0334-0139
Adolescents with sickle cell disease may have problems of adjustment during the phase of transition from pediatric to adult health care. It is important to identify factors that may help in the development of appropriate interventions. We were interested in possible similarities, in terms of adjustment to transition in two countries where health service provision is quite different. The study employed a cross-sectional survey design, with a sample of adolescents (still in pediatric care) drawn from a U.S.A national sample and a single U.K. site. A battery of validated disease-specific measures was used to assess adolescent perceptions of physical and psychological symptoms, self-efficacy, self-management skills, and gather demographic data. There were no significant demographic differences between the samples of adolescents in the two countries. Taken together, the two populations indicate that adolescent age and educational level were associated with symptoms (physical and psychological). Self-efficacy is not associated with demographic factors, but is predicted by physical symptoms, while different aspects of self-management are predicted by age (responsibility with care), educational level (independence and confidence with care) and psychological symptoms (knowledge about SCD and confidence with care). This study highlights the importance of gathering disease-specific transitional information from adolescents with sickle cell disease in the U.K. and U.S.A. It also shows that demographic variables have to be considered in the development of any intervention programme.
Chinegwundoh F, Anie KA, 2004, Treatments for priapism in boys and men with sickle cell disease, COCHRANE DATABASE OF SYSTEMATIC REVIEWS, ISSN: 1469-493X
Asgharian A, Anie KA, Berger M, 2003, Women with sickle cell trait: reproductive decision-making, JOURNAL OF REPRODUCTIVE AND INFANT PSYCHOLOGY, Vol: 21, Pages: 23-34, ISSN: 0264-6838
Cummins O, Anie KA, 2003, A comparison of the outcome of cognitive behaviour therapy and hydroxyurea in sickle cell disease, Psychology, Health & Medicine, Vol: 8, Pages: 199-204
Anie KA, Steptoe A, 2003, Pain, mood and opioid medication use in sickle cell disease., Hematol J, Vol: 4, Pages: 71-73, ISSN: 1466-4860
Patients with sickle cell disease show wide variations in their experience of pain, and in the impact of pain on everyday functioning. This study examined relations between pain, mood, physical activity, and medication use in a longitudinal naturalistic self-monitoring study of 21 adult sickle cell patients over 12 months. Results suggest that opioid medication use is related to the impact of pain on daily life. Patients who use opioids more frequently for sickle cell pain show more disruption of their lives, with reduced activity levels and more pessimistic mood.
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