Date: Tuesday 3rd October 2017
- To view the functions and layout of a centre of excellence for haemoglobinopathy management
- To discuss a proposed programme for accreditation of thalassaemia centres across the world, brainstorming on the principles and practices of such a programme, having the Torino centre as a model.
- To discuss the use of electronic health records in a treatment centre and possible benefits in networking and research
- From TIF: Dr Androulla Eleftheriou (TIF Executive Director) and Dr Michael Angastiniotis (Medical Advisor)
- Professor Ali Al Assaf MD, MPH Dr Al-Assaf is currently the 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.
From the Centro Microcitemie, Dipartmento Scienze Pediatriche, University of Torino:
- Prof Antonio Piga – Director
- Dr Filomena Longo
The centre is located at the San Luigi Gonzaga Hospital, in Torino.
The Centre is accredited by the local government and the University, as the regional centre for haemoglobin disorders, and is responsible for the diagnosis, prevention and management of these disorders. It caters for 2040 Transfusion-Dependent thalassaemia patients a number, which reaches around 5000 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 and so 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, performed by doctors of the centre.
The centre is under the paediatric department by continues to see adult patients. The staff to patient ratio is based on past WHO recommendations, but limited resources do not always allow keeping these standards. 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.
More information will follow soon.
- What is accreditation?