scholarly journals Sickle cell disease: a serious and unknown problem of public health in Brazil

1999 ◽  
Vol 75 (3) ◽  
Author(s):  
Lúcia Mariano da Rocha Silla
Keyword(s):  
Public Health ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease

Sickle Cell Disease: Current Activities, Public Health Implications, and Future Directions

2007 ◽  
Vol 16 (5) ◽  
pp. 575-582 ◽  
Author(s):  
Melissa Creary ◽  
Dhelia Williamson ◽  
Roshni Kulkarni
Keyword(s):  
Public Health ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Future Directions ◽  
Health Implications

scholarly journals An Educational Study Promoting the Delivery of TCD Screening in Paediatric Sickle Cell Disease: A European Multi-Centre Perspective

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2172-2172
Author(s):  
Baba PD Inusa ◽  
Corrina Macmahon ◽  
Laura Sainati ◽  
Raffaella Colombatti ◽  
Maddalena Casale ◽  
...  
Keyword(s):  
Public Health ◽  
Sickle Cell Disease ◽  
Training Program ◽  
Sickle Cell ◽  
Screening Program ◽  
Cell Disease ◽  
Chi Square ◽  
Modular Training ◽  
Competency Evaluation ◽  
Anatomical Information

Background: Recent studies on the impact of migration on the geographical distribution of the HbS allele have highlighted sickle cell disease (SCD) as a global public health issue. Although considered a "rare disease" due to its global frequency in the 28 countries of the European Union, SCD is the most common genetic disease in France and the United Kingdom and its frequency is steadily rising in many other countries of central and southern Europe. At present, less than 50% of children with SCD have access to TCD screening in the USA and Europe. Most centers use the non-imaging approach, as described in the STOP trials, which is a "blind technique" where there is no guiding anatomical information and thus relies heavily on operator experience. Some centers now use imaging TCD which provides anatomical information enabling the Circle of Willis to be visualized and so facilitates identification of the basal cerebral arteries and orientation of the Doppler beam when acquiring blood velocities. The primary study objective was to determine the effectiveness of the modular training program in achieving the high level of scanning competency described in the STOP trial, irrespective of practitioner background and when using either non-imaging or imaging TCD. Methodology. The modular TCD training program was developed at the training center in London and delivered to trainees at all three centers (London-UK, Padova-Italy and Dublin, Ireland). The program comprised of a 2-day instructional course covering theory and practical aspects of TCD and incorporated significant hands-on instruction. This was followed by trainees scanning at their own hospital until they had collected a log book of at least 40 scans (within a one year period), after which a scan review and competency evaluation was performed. Results.Modular training program.Nine training courses were held (six in England, one in Ireland and two in Italy); these were attended by a total of 51 trainees (Table 1). Approximately half the trainees (45%) successfully completed the competency evaluation, 20 were still in training, two of whom had failed the assessment and eight withdrew from the program due to problems with local funding for staff or equipment. The ten trainees with an ultrasound background (clinical scientists) were able to acquire TCD skills rapidly as demonstrated by the high pass rate. The findings were more variable in the clinician group (pediatricians and nurses) with five requiring refresher courses and twelve failing to complete the minimum annual scan number (forty) due to small local sickle populations. Comparative analysis of TCD data obtained before and after training.A total of 555 patients were included in this study; 181 patients at Center 1 (52 males, mean age 7.9±3.8 (range 2-15.4 years), genotypes: 134 HbSS, 39 HbSC, 8 HbSβ thalassemia), 194 patients. Center 2 (53 males, mean age 7.4±3·2 (range 2-15.1 years), genotypes: 158 HbSS, 32 HbSC, 4 HbSβ) and 154 patients at Center 3 (50 males, mean age 6.4±3.5 (range 2-15.1 years), genotypes: 154 HbSS, 10HbSC, 16 HbSβ thalassemia). There was no significant difference in gender distribution (Chi-Square=0.313, p=0.85), but more young patients were recruited in Center 3 (ANOVA, F=8.9, p<0.001), more HbSC patients in Centers 1 and 2 and more Sβ thalassemia patients in Center 3 (Chi-Square=21.0, p<0.001).Conclusion: Diagnostic vascular ultrasound is highly operator-dependent; hence training and competency validation are essential in producing skilled TCD operators. The modular training program described here was effective in ensuring standardized TCD technique, irrespective of professional background. In this multi-center study TCD velocity measurements and STOP classification were consistent, irrespective of TCD mode and European country. We believe that this is the first modular training program that has demonstrated efficacy when delivered in different European countries. Delivery of this program in areas where TCD is under-provided will augment the number of trained TCD operators, thus facilitating access to specialist diagnostic services. This will have a significant impact on public health across Europe where SCD patients are increasing due to migration. Competency and quality assurance (QA) are important components of such a screening program; further work is in progress to develop an achievable QA program for ongoing regulation of this screening program. Disclosures Colombatti: AddMedica: Consultancy; Novartis: Consultancy; Global Blood Therapeutics: Consultancy.

scholarly journals Integrating Datasets on Public Health and Clinical Aspects of Sickle Cell Disease for Effective Community-Based Research and Practice

Diseases ◽  
2020 ◽  
Vol 8 (4) ◽  
pp. 39
Author(s):  
Raphael D. Isokpehi ◽  
Chomel P. Johnson ◽  
Ashley N. Tucker ◽  
Aakriti Gautam ◽  
Taylor J. Brooks ◽  
...  
Keyword(s):  
Public Health ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
The United States ◽  
Clinical Aspects ◽  
Cell Disease ◽  
Community Based ◽  
Community Based Research ◽  
Research And Practice ◽  
Effective Community

Sickle cell disease (SCD) is a genetic disease that has multiple aspects including public health and clinical aspects. The goals of the research study were to (1) understand the public health aspects of sickle cell disease, and (2) understand the overlap between public health aspects and clinical aspects that can inform research and practice beneficial to stakeholders in sickle cell disease management. The approach involved the construction of datasets from textual data sources produced by experts on sickle cell disease including from landmark publications published in 2020 on sickle cell disease in the United States. The interactive analytics of the integrated datasets that we produced identified that community-based approaches are common to both public health and clinical aspects of sickle cell disease. An interactive visualization that we produced can aid the understanding of the alignment of governmental organizations to recommendations for addressing sickle cell disease in the United States. From a global perspective, the interactive analytics of the integrated datasets can support the knowledge transfer stage of the SICKLE recommendations (Skills transfer, Increasing self-efficacy, Coordination, Knowledge transfer, Linking to adult services, and Evaluating readiness) for effective pediatric to adult transition care for patients with sickle cell disease. Considering the increased digital transformations resulting from the COVID-19 pandemic, the constructed datasets from expert recommendations can be integrated within remote digital platforms that expand access to care for individuals living with sickle cell disease. Finally, the interactive analytics of integrated expert recommendations on sickle cell disease management can support individual and team expertise for effective community-based research and practice.

scholarly journals Doença falciforme e o teste do pezinho: implicações para a saúde pública

2019 ◽  
Vol 20 (3) ◽  
pp. 4-6
Author(s):  
Meirielli Vieira Bruzeguini ◽  
Maria Carmen Viana
Keyword(s):  
Public Health ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Cell Disease ◽  
Health Implications ◽  
Blood Spot

Sickle Cell Disease and newborn blood spot screening: public health implications

Healthy People 2020 Blood Disorders and Blood Safety: A Vision of Improved Health for Patients with Sickle Cell Disease, Thalassemias and Hemophilia

Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 4771-4771
Author(s):  
Ellen M. Werner ◽  
Lorraine Brown ◽  
Kathryn L. Hassell ◽  
Donna DiMichele
Keyword(s):  
Public Health ◽  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Healthy People ◽  
Blood Safety ◽  
Cell Disease ◽  
Blood Disorders ◽  
Governmental Agencies ◽  
Healthy People 2020 ◽  
Health Objectives

Abstract Abstract 4771 In December 2010, the US Department of Health and Human Services released Healthy People 2020 (HP2020) Objectives for the nation. For the first time in its thirty-year history, US health objectives include rare blood disorders and blood safety (BDBS). HP2020 is a public health program that incorporates current clinical evidence and best practices in medicine and public health to identify public health priorities. The objectives are not clinical practice guidelines. Rather, they are scientifically-based, quantified goals to improve the health of specific populations, such as children and older adults. Their development and implementation necessitate partnerships among governmental agencies, organizations, private companies, and medical and health associations at the local, state and national levels. Partners collaborate on implementing activities to reach targeted health objectives for specific populations using educational campaigns, media and other communication venues. NHLBI led the effort with HRSA, CDC, FDA, and the Office of the Secretary to develop, vet and plan implementation of the BDBS objectives. The development process was based on qualitative research methods such as key informant interviews, semi-structured interviews and categorization of data into patterns. For example, categorization of interview results (“data”) identified specific objective topics, such as screening for complications and penicillin prophylaxis in sickle cell patients aged 4 months to 5 years. Other BDBS Objective topics are: vaccinations; patient and family referrals; care in a medical home; disease-modifying therapies; avoidable hospitalizations; high school completion; community health education; awareness of carrier status; joint health; and alloimmunization in chronic transfusion. http://healthypeople.gov/2020/topicsobjectives2020/default.aspx By sponsoring the BDBS objectives, lead governmental agencies commit to collecting, analyzing and reporting data on progress. We adopted the default target of a 10% improvement for each objective by 2020. If targets for each objective are met, the question will be: What is the impact of reaching these targets on morbidity, mortality and quality of life for patients with sickle cell disease, thalassemias and hemophilia? Disclosures: Hassell: NIH: Research Funding.

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