TIF delegates visited the ‘Centro Microcitemie’ of the Paediatric Sciences Department, University of Turin, on 3 October 2017, with the aim to:
- view the functions and layout of a Centre of Excellence for Haemoglobinopathy Management,
- discuss a proposed programme for accreditation of Thalassaemia Centres across the world, and brainstorm on the principles and practices of such a programme, having the Turin Centre as a model,
- discuss the use of electronic health records in a treatment centre, and possible benefits in networking and research.
Dr Androulla Eleftheriou, TIF Executive Director, and Dr Michael Angastiniotis, TIF Medical Advisor, represented the Federation, and were accompanied by Professor Ali Al Assaf MD, Executive Director of the American Institute for Healthcare Quality (AIHQ), ex-Professor in the Health Sciences Department of the University of Oklahoma and TIF Advisor.
The delegates met with the Centre’s Director and Dean of the School of Medicine at S. Luigi University Hospital of Turin University, Prof. Antonio Piga and Dr Filomena Longo, Haematologist.
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The Centre is located at the San Luigi Gonzaga Hospital, in Turin and is accredited by the local government and the University, as the Regional Centre for Haemoglobin Disorders, responsible for the diagnosis, prevention and management of these disorders. It caters for 2.040 Transfusion-Dependent thalassaemia patients a number, which reaches around 5.000 patients when sickle cell disease patients are included.
Recent migrations have increased the number of patients, which were steady since reduced mortality and limitation in the new affected births, through the prevention programme, had kept the numbers in balance. Most migrants come from sub-Saharan Africa, therefore sickle cell disease has seen the greatest increase.
The prevention programme is based on a voluntary screening programme. Its effectiveness is the result of good community awareness, the acceptance of prenatal diagnosis (about 90 cases per year) and termination of affected pregnancies, but also of ante-natal screening of women in early pregnancy. The Centre is closely linked to the screening laboratory and the molecular lab, and is responsible for genetic counselling.
The Centre also caters for other rare anaemias and is part of the Eurobloodnet network, which has given the Centre’s Director the responsibility for research and clinical trials. Through this visit, TIF gained useful insights into the requirements of reaching the level of an accredited service, which must be seen in the context of the health system in which they function.
This visit falls under TIF’s newest plans for the development of an accreditation programme in Cyprus – International Commission for Quality in Thalassaemia and other Haemoglobinopathies (ICQTH) – to ensure the quality of the healthcare services provided in the context of thalassaemia treatment and other haemoglobinopathies.
Accreditation also includes an assessment of the care and services that healthcare-related organizations are delivering in important areas such as preventive services and client satisfaction.
Organizations seek accreditation for different reasons but most do so in an effort to meet regulatory and financial requirements, increase market share, win customer satisfaction or to gain higher professional reputation.