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Abstract
Objective. As a result of global population movements, haemoglobin disorders (thalassaemias and sickle cell disorders) are increasingly common in the formerly non‐indigenous countries of Northern and Western Europe and in the indigenous countries of Southern Europe. This article presents an overview of the changing picture and a method for assessing service needs. Method. Data on country of birth or ethnic origin of residents are adjusted to obtain the estimated proportions of residents and births in non‐indigenous groups at risk for haemoglobin disorders in European countries. The results are combined with prevalence data in each country of origin to obtain country prevalence estimates. Service indicators (annual tests or other interventions required to ensure equitable delivery of treatment and prevention) are then derived by country. Results. Haemoglobin disorders now occur at comparable frequency throughout Northern, Western and Southern Europe. Annually, there are more affected conceptions in Northern and Western than in Southern Europe, and sickle cell disorders are more common than thalassaemias. There is growing need for health policy‐makers to support motivated professionals working to develop optimal patient care, carrier diagnosis, genetic counselling and access to prenatal diagnosis throughout the Region. Conclusion. There is a strong case for pan‐European collaboration on haemoglobin disorders to share policies, standards and the instruments required to support them. These include methods for needs assessment, service standards, education and information strategies and materials, and methods for evaluating service delivery.
Acknowledgements
This article is based on personal communications from an entire international network of professional colleagues in addition to the authors. We greatly appreciate their generous cooperation. The stimulus leading to our undertaking this work was provided at two meetings of a Northern European group, in Karlskoga, Sweden in 2001 and in London in 2003, sponsored by Swedish Orphan and Apotex. Bernadette Modell is a retired Wellcome Principal Research Fellow.