Elizabeth N. Anionwu

A multidisciplinary approach for improving services in primary care : randomised controlled trial of screening for haemoglobin disorders

Abstract Objective: To investigate the feasibility of improving screening for carriers of haemoglobin disorders in general practice by using a nurse facilitator to work with primary care teams and the relevant haematology laboratories; to identify problems in communication between all those involved in delivering the service, and to implement solutions. Design: Two year, practice based randomised controlled trial. Setting: North London area where 29% of residents and 43% of births are in ethnic groups at risk for haemoglobin disorders. Subjects: 26 of the 93 practices using the services of the areas haematology laboratory agreed to take part and were randomly divided into control and intervention practices. Main outcome measure: Change in number of requests for screening tests for haemoglobin disorders made by control and intervention practices in baseline and intervention years. Results: The number of screening tests requested varied from 0-150 in the 93 practices in the baseline year. Study practices tended to have made a moderate number of requests (10-50) during this period. During the intervention year intervention practices made 292 more requests (99% increase) and control practices made 74 fewer requests (23% decrease; P=0.001 for difference in median change). Four practices, three of which were singlehanded, accounted for 75% of the increase. The number of requests from intervention practices, adjusted for baseline requests, was 3.2 times higher than control practices (P<0.0001). Conclusion: General practitioners and practice nurses are willing to undertake a new genetic screening service (or expand an existing one) if they are persuaded that it benefits the health of a significant proportion of their practice population. They need appropriate tools (for example, information materials for carriers and groups at risk), and the laboratory must be sensitive to their needs. Preconceptional carrier screening and counselling need to be coupled with antenatal screening.

Confidence of primary care physicians in their ability to carry out basic medical genetic tasks-a European survey in five countries-Part 1

Western health care systems are facing today increasing movement of genetic knowledge from research labs into clinical practice. This paper reports the results of a survey that addressed the confidence of primary care physicians in their ability to carry out basic medical genetic tasks. The survey was conducted in five countries (France, Germany, The Netherlands, Sweden and the UK). Stratified random samples were drawn from primary care physicians in the five countries representing a sampling frame of 139,579 physicians. Stepwise binary logistic regression procedures were performed to identify the predictor variables for self-reported confidence. Three thousand six hundred eighty-six physicians participated and filled out a self-administered questionnaire. The margin of error for accurate representation of each group of European general practitioners and specialists in the total sample is 2.9% for GP, 2.8% for obstetricians/gynaecologists (OB/GYN) and for paediatricians (PAED) 2.6% (95% confidence level). Confidence in their ability to carry out basic medical genetic tasks is low among participating primary care physicians: 44.2% are not confident, 36.5% somewhat confident, confident or very confident are 19.3%. In each country, those confident/very confident represent less than 33% of the participating physicians. Primary care physicians who report the lowest levels of confidence prove to be those least exposed to medical genetics information and training. Although there are significant differences in the way in which professional education is organised and practice is regulated across European countries, there is a need for a coordinated European effort to improve primary care physicians’ background in medical genetics.

Neonatal screening for sickle cell disorders : what about the carrier infants ?

Summary points Neonatal screening for sickle cell disorders detects between 17 and 100 carrier infants for each child detected as having sickle cell disorder Information on neonatal carrier status is an unavoidable outcome of the neonatal screening process Withholding information from parents is not justified Further research is needed to evaluate the benefits and risks of this information and the effectiveness of different policies for follow up This is relevant to future developments in molecular genetics, which may place health

Sickle cell disease in Britain.

Sickel cell disease is common in urban areas of Britain and it is estimated that in London alone there are nearly 2000 patients. One hundred and eighty four patients with sickle cell disease are known to the Central Middlesex Hospital, and 155 of those attend the sickle cell clinic regularly. The commonest cause for admission to hospital is acute painful or vaso-occlusive crisis, which accounts for 80% of all acute admissions; 12% of admissions are for acute chest syndrome. Comparison of clinical features in Brent and in Jamaica shows that the Brent patients with homozygous sickle cell anaemia are admitted with painful crises more frequently than Jamaican patients. However, the frequency of admissions for chest syndrome and priapism, and the incidence of splenomegaly are similar. Leg ulcers are uncommon in Brent. Patients with sickle cell haemoglobin C disease appeared more severely affected in Jamaica than in Brent. During the past two years 3165 newborn babies have been screened for sickle cell disease at the Central Middlesex Hospital: five babies with homozygous sickle cell anaemia and three babies with sickle cell haemoglobin C disease were detected. The overall incidence of sickle cell trait was 3.2% and of haemoglobin C trait 0.8%. A significant number of babies with sickle cell disease are born in London every year. It is essential that such babies are detected at birth and offered prophylaxis against pneumococcal infection, which is one of the major causes of infant mortality. Sickle cell disease is becoming an important blood disease in Britain and firm guidelines for the management of acute and chronic complications are required.

Genetics in clinical practice: general practitioners' educational priorities in European countries

Purpose: To assess how general practitioners (GPs) from European countries prioritized their genetic educational needs according to their geographic, sociodemographic, and educational characteristics.Methods: Cross-sectional survey, random and total samples of GPs in five European countries (France, Germany, the Netherlands, Sweden, and United Kingdom), mailed questionnaires; Outcome: Genetic Educational Priority Scale (30 items; six subscores).Results: A total 1168 GPs answered. Priorities differed (P < 0.001) but were consistently ranked across the countries. Previous education had a marginal effect on priorities. Women gave higher priorities than men to Genetics of Common Disorders (adjusted odds ratio [ORadj], 2.5; 95% confidence interval [CI], 1.6–3.8), Psychosocial and Counseling Issues (ORadj, 1.6; 95% CI, 1.1–2.5), and Ethical, Legal, and Public Health Issues (ORadj, 1.3; 95% CI, 1.1–1.8), but lower than men to Techniques and Innovation in Genetics (ORadj, 0.7; 95% CI, 0.5–0.9). Older physicians gave higher priorities to Basic Genetics and Congenital Malformations (ORadj, 1.5; 95% CI, 1.1–1.9), and to Techniques and Innovation in Genetics (ORadj: 1.3; 95% CI, 1.0–1.7), compared with their younger colleagues.Conclusions: Expressed genetic educational needs vary according to the countries and sociodemographics. In accordance, training could be more focused on genetics of common disorders and on how to approach genetic risk in clinical practice rather than on ethics, new technologies, or basic concepts.

The Role of Ethnic Monitoring in Mainstreaming Race Equality and the Modernization of the NHS: A Neglected Agenda?

The Department of Health has adopted mainstreaming as a fundamental principle of its race and equal opportunities work in service delivery, workforce policies and the tackling of institutional racism. A logical and necessary extension of this approach is to mainstream ethnic monitoring, a need supported by an increasing number of government departments, agencies and independent research bodies and implicitly recognized in the equalities framework for the NHS. However, the sparseness of proposals to improve the information base appears as the weak link in the Departments race equality agenda, reflecting a highly fragmented and piecemeal approach to ethnic monitoring in the past. Much of the information collected in the NHS and social care settings either does not record ethnic group or yields data of such poor quality and completeness that they are not used. Monitoring must be made relevant to the needs of those collecting the data as well as for central reporting, so that usage itself contributes to improvements in quality. Guidance and training covering the principles of monitoring, the process of collection and the use of the data generated should be a key component in implementing the process. Making ethnic monitoring a high political priority and locating it at the centre of race equality policies is needed to ensure that the huge potential it offers in the modernization of the NHS is fulfilled.

TRAINING OF COUNSELLORS ON SICKLE-CELL DISORDERS IN AFRICA

Falling infant and childhood mortality rates, especially in urban centres, have allowed greater survival of individuals with sickle-cell disorders (SCD), and the need to provide appropriate services has become pressing. The training and employment of counsellors on SCD, shown here to be popular and feasible, seems an essential first step towards the development of a community-based and appropriate policy for coping with SCD in Africa.

Service support to families caring for a child with a sickle cell disorder or thalassaemia: the experience of health professionals, service managers and health commissioners

Until recently, health care policy has largely ignored sickle cell disorders (SCDs) and thalassaemia. This is despite the difficulties faced by service users and their families: the consequences of which range from denial of informed choice to avoidable suffering and stress. This article, by presenting material from a qualitative evaluation of service support to families caring for a child with a sickle cell disorder or thalassaemia, examines these problems in detail. We specifically focus on the accounts of health professionals, their managers and health commissioners, to explore treatment and support for children with a haemoglobinopathy. We conclude that ill-coordinated and poorly resourced haemoglobinopathy services represent major problems for users and their families. However, we also highlight examples of good practice; demonstrating that improvements can be made with clear planning, employment of appropriate and well-trained staff, good inter-agency working and user involvement.

General practitioner management of genetic aspects of a cardiac disease: a scenario-based study to anticipate providers' practices

It is increasingly recognised that genetics will have to be integrated into all parts of primary health care. Previous research has demonstrated that involvement and confidence in genetics varies amongst primary care providers. We aimed to analyse perceptions of primary care providers regarding responsibility for genetic tasks and factors affecting those perceptions. Postal questionnaire including a hypothetical case management scenario of a cardiac condition with a genetic component was sent to random samples of medically qualified general practitioners in France, Germany, Netherlands, Sweden and UK (n = 1,168). Logistic regression analysis of factors affecting primary care practitioners’ willingness to carry out genetic tasks themselves was conducted; 61% would take a family history themselves but only 38% would explain an inheritance pattern and 16% would order a genetic test. In multivariate analysis, only the country of practice was consistently predictive of willingness to carry out genetic tasks, although male gender predicted willingness to carry out the majority of tasks studied. The stage of career at which education in genetics had been provided was not predictive of willingness to carry out any of the tasks analysed. Country of practice is significantly predictive of attitudes towards genetics in primary care practice and therefore genetic education structure and content in Europe will need to be significantly tailored towards country-specific approaches.

Mary Seacole: global nurse extraordinaire

AIMS A discussion of recently discovered literature that reveals how after the Crimean War ended in 1856, Jamaican nurse, doctress and entrepreneur Mary Seacole travelled more widely and gained further international recognition than had previously been appreciated. BACKGROUND New findings demonstrate that Seacoles international charitable and business activities were reported more widely than realised. Recently discovered literature uncovers her networking and strategic skills in various social milieus. A former Scutari nurse and 39 other women, offered their service to Seacole to nurse British soldiers in India. Newspapers also reported the medal she had been awarded from the Turkish government. DESIGN Discussion paper. DATA SOURCES Digitized 19th-century newspaper reports, and 1857 Dutch and 1858 French translations of Seacoles autobiography and a recently discovered handwritten letter dated 1 October 1857 from Seacole to Sir Henry Storks, at the time Secretary for Military Correspondence at the War Office, London. IMPLICATIONS FOR NURSING Awareness of the findings affords a more thorough understanding of the scope and diversity of nursing history. This can provide valuable role models for the 21st century generations of competent and self-confident healthcare professionals. The new evidence offers further testimony that Seacole can truly be considered as one such figurehead. CONCLUSIONS British and international primary sources reveal Mary Seacole as an historical and charismatic global phenomenon, more than had been previously realised.