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The comprehensive care of sickle cell disease

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Okpala I, Thomas V, Westerdale N, Jegede T, Raj K, Daley S, Costello-Binger H, Mullen J, Rochester-Peart C, Helps S, Tulloch E, Akpala M, Dick M, Bewley S, Davies M, Abbs I. The comprehensive care of sickle cell disease.

Eur J Haematol 2002: 68: 157–162. © Blackwell Munksgaard 2002. Abstract:

Millions of people across the world have sickle cell disease (SCD). Although the true prevalence of SCD in Europe is not certain, London (UK) alone had an estimated 9000 people with the disorder in 1997. People affected by SCD are best managed by a multidisciplinary team of professionals who deliver comprehensive care: a model of healthcare based on interaction of medical and non-medical services with the affected persons. The components of comprehensive care include patient/parent information, genetic counselling, social services, prevention of infections, dietary advice and supplementation, psychotherapy, renal and other specialist medical care, maternal and child health, orthopaedic and general surgery, pain control, physiotherapy, dental and eye care, drug dependency services and specialist sickle cell nursing. The traditional role of haematologists remains to co-ordinate overall management and liase with other specialities as necessary. Co-operation from the affected persons is indispensable to the delivery of comprehensive care. Working in partnership with the hospital or community health service administration and voluntary agencies enhances the success of the multidisciplinary team. Holistic care improves the quality of life of people affected by SCD, and reduces the number as well as length of hospital admissions. Disease-related morbidity is reduced by early detection and treatment of chronic complications. Comprehensive care promotes awareness of SCD among affected persons who are encouraged to take greater control of their own lives, and achieves better patient management than the solo efforts of any single group of professionals. This cost-effective model of care is an option for taking haemoglobinopathy services forward in the new millennium.
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Keywords: genetic counselling; management; psychosocial aspects; sickle cell

Document Type: Research Article

Affiliations: 1: Department of Haematology, Guy's & St Thomas' Hospitals Trust; 2: Community Health South London; 3: Social Services Department, Lewisham; 4: Department of Obstetrics; 5: Department of Orthopaedic Surgery; 6: Department of Renal Medicine, Guy's & St Thomas' Hospitals Trust, London, UK

Publication date: March 1, 2002

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