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A twinning action for improving the medical care
of haemophiliac patients in the West Algerian region
Algeria counts 33 millions inhabitants, about 1200 haemophiliacs, and one recognised haemophilia centre in Algiers. Networking for medical
care and proximity treatment were the main recommendations of a consensus conference, organised in 2002, in Algiers, under the auspices
of the Algerian Health Ministry to alleviate the difficulties in care, diagnosis, follow-up and treatment availability for haemophiliacs.
In 2005, a medical twinning started between the Strasbourg CRTH and the Haematology departments of Oran and Sidi-Bel-Abbès hospitals
to improve both the existing medical care and the West network organisation. Within this framework, the following activities were organised: (a)
Four scientific medical meetings (state of medical care and regional patients’ committee, prophylaxis, orthopaedics, inhibitors) at the
university/hospitals of Oran, Sidi-Bel-Abbès and Tlemcen;(b)
Training courses(haematologists, orthopaedists) at Strasbourg hospital; (c)
Multidisciplinary consultations for medication and orthopaedic therapeutic evaluation in Oran and Sidi-Bel-Abbès hospitals.
In addition, the World Federation of Haemophilia organised a meeting (Algiers, 03/2007) to support the Algerian National Haemophilia
Association and regional committees.
A. FARADJI 1, Y. RAHAL2, R. MESSAOUDI3,
A. HADJEB 3, K. MOULASSERDOUNE 2, N. ZEMRI 3,
Links were then established between the French and Algerian associations of haemophilia.
N. MESLI 4, Z., BENHADJI-ZOUAOUI 3, and H. TOUHAMI 2
The existing twinning enabled the Strasbourg CRTH to co-operate in the ongoing national training programme for haemophilia care which
1 Hemophilia Regional Center, University Hospital Hautepierre,
67098 STRASBOURG, FRANCE
started in 2007 under the auspices of the Algerian Health Ministry, coordinated by a national medical committee and supported by the Novo
Haematology services, University Hospitals of ORAN, SIDI BEL ABBES and TLEMCEN, ALGERIA
These activities aimed to organise haemophilia care by setting-up: (1) regional haemophilia centres ensuring diagnosis, care and follow-up and (2) proximity treatment in accordance with the national health policy.
Foreword: Haemophilia care in Algeria
Introduction: the West region before the twinning
V The first haemophilia care was organised in the beginning of 60s at the Algiers
As the West region hospitals could hardly diagnose haemophilia and Willebrand disease (lack of
Mustapha Bacha Hospital. Diagnosis and treatment were progressively taken in charge
automates and reactives), most haemophiliacs and Wil ebrand patients were obliged to go to Algier for diagnosis
V West Algerian Haemophiliac network;
Medical and associative willingness to set up a network in line with
V 1989 (11/09): agreement of the Algerian Haemophiliacs Association
to the Consensus Conference recommendations:
V 1996 : Opening of the 1st Haemophilia Centre at the Algier University Hospital Béni-
- First medical meeting (Oran, November 2005) in the framework of the twinning, the existing West medical network
Messous for the Algerian centre region haemophiliacs care
was presented by the co-ordinator Pr H. TOUHAMI, grouping 14 wilayas health sectors around the 4 haemophilia
V 2000 : First national epidemiology study under the auspices of the Health Ministry.
regional hospitals of Oran, Sidi bel Abbès, Tlemcen and Béchar
976 haemophiliacs ≈ 3.25/100 000 inhabitants (expected number: 1500 – 3000)
- Associative meeting (Ghazaouet (Tlemcen), december 2005), emphasized the need of networking .
2006 updated: 1128 haemophiliacs ≈ 3.76/100 000 inhabitantsDistribution per region: Centre: 36%; East: 24%; West: 24%, South-West: 3%.
V Medical care:
230 haemophiliacs were identified among 6 842 663 inhabitants (prevalence: 3.36 /100 000
inhabitants), 79 of them (adults) being treated at the Oran University Hospital and 31 (children) at the Canastel
V 2002 : Consensus Conference on therapeutic care and care networking.
V 2005 : Health Minister Decree (22/11/2005 n° 00/7/SPMINI/MSPRH/05) on
V The haemophiliac associative movement:
several associations (Oran, Mascara, Tlemcen, Bechar)
pharmaceutical products management in public health hospitals
existed and the remaining one, Ghazaouet, was the most active and organised an annual seminar on haemophilia. Demotivation of haemophiliacs linked to the chronic lack of medicines availability .
Twinning Activity (2006-2008)
First medical and associative meeting
Training programme in France
Medical meeting : Sidi Bel Abbès (09/2006)
Haematologists at the University Hospital of Strasbourg (04/2006)
V The prospective cohort of haemophiliacs of the West region
: 287 haemophiliacs
- Oran and its area (Mostaganem, Chlief, Ain Defka, Tissemsslit) : 114
V Visits of 6 haematologists (3 from Sidi Bel Abbès and 3 from Oran): 2 clinical
89 of them are identified in the Oran University Hospital.
haematologists, 3 haemobiologists and 2 medical doctors from transfusion centres.
- Sidi Bel Abbès University Hospital and its area (Mascara, Saïda, Tiaret, El Bayad) : 91
V The objectives aimed to collect information on:
-Tlemcen University Hospital and its area (Ain Temouchent, Ghazaouet, Nedroma, Beni-Saf,
- the organisation and functioning of the Strasbourg CRTH
- the different care methods (consultation for diagnosis announcement, treatment
- Bechar Hospital and its area (Tindouf, El Bayadh, Adrar): 34
and follow up of haemophiliac patients or suffering from haemorrhagic diseases)
V Medical care:
Despite an adequate structure for haemophiliacs (medical, surgical, biological)
- the techniques of laboratory biological screening on haemophilia and
- Difficulties in availability of medicines linked to unexpected emergency arrivals of hemorrhagic diseases
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- the organisation and functioning of blood donation activities
- Numerous problems as regards the diagnosis (lack of reactives), follow-up (distance, low socio-economic level) or in case of emergency and availability of treatments
Physiotherapists at Osseja rehabilitation centre (05/2007)
V The twinning proposed to contribute to:
V The objectives were to collect information on:
- the care organisation through a regional networking between the 3 University Hospitals (Oran,
- the organisation and functioning of a rehabilitation centre specialised in haemophilia in France
Sidi Bel Abbès, Tlemcen) thus constituting the West Regional Centre.
- the different rehabilitation care methods of haemophiliac adults and children
set up a proximity treatment (with the setting up of the self-treatment practice) to compensate Orthopaedic surgeons at The University Hospital of Strasbourg (06/2007)
difficulties linked to too long distances to reach neighbouring hospitals and health centres in each wilaya.
- collect information on the organisation and functioning of an orthopaedic
the setting up of diagnosis screening and confirmation, follow up and major surgery
surgery centre specialised in haemophilia with more than 10 years work co-
(orthopaedic…) in University Hospitals.
Associative meeting : Sidi Bel Abbès (09/2006)
- study the orthopedic surgical care methods of adult haemophiliacs
V Mr J.M. BOUCHEZ, General Secretary of the French Association of Haemophiliacs
- assist in 2 planned surgery interventions (a priority in Algeria): a knee
participated in the meeting with representatives of different regional associations and the
synovectomy and an ankle arthrodesis in 2 haemophiliacs.
Computer scientist at the University Hospital of Strasbourg (09/2007)
V Pr H.TOUHAMI proposed to organise soon a general constitutive assembly in Ghazaouetaiming to set up the regional association according to the will of the founding members.
V One week training for a computer scientist (Oran University Hospital Directorate) aiming to a haemorrhagic diseases follow-up database at the Strasbourg CRTH and contributed to a first adaptation of this database for specific needs.
V A collective enthusiasm emerged from this meeting, in particular as regards the wil ingness to build together an associative movement which could help everybody.
V This database should help to constitute the register of haemophiliacs identified in the West Algerian region.
Nursing officer at CHU Strasbourg (03/2008)
V The objectives aimed to collect information on :
Thematic medical meetings
- The Haemophilia centre organisation- and various haemophilia care modalities (periodical visits, planned or emergency hospitalisation.)
Orthopaedic aspects of haemophilia : University Hospital of Tlemcen (03/2007)
V Dr A. FARADJI, Pr J. SIBILLIA, rheumatologist, Dr J DURCKEL,
radiologist and N. EL RIFAI, physiotherapist (Strasbourg University Hospital), shared their experience with Algerian medical doctors.
Consultations in Oran and Sidi Bel Abbès (03,06,09/2007)
V Pr H. TOUHAMI presented the medical care organization of the
V Dr A. FARADJI and N. EL RIFAI physiotherapist (Strasbourg CRTH)
West region network and the updated haemophiliac cohort : 327
participated with the haematologists from Oran and Sidi Bel Abbès in the
among them 117 at Oran University Hospital.
organisation of consultations for planning needs in substitutive medicines
V Prof Z. ZOUAOUI mentioned the medical and associative
and orthopaedic therapeutic acts for several young and adult
haemophiliacs (27 SBA, 53 Oran) treated in these hospitals and coming
- set up of the West region haemophiliacs register since the regional
from the wilayas of their respective areas.
Multidisciplinary orthopaedic Consultations in Oran, Sidi Bel Abbès and Tlemcen (03/2008)
- set up of the Haemophiliac association of Sidi Bel Abbès with the
Dr A FARADJI, Dr J. LECOCQ, physical medicine and
rehabilitation doctor (Strasbourg CRTH) and haematologists, re-educators,
- training of biologists, orthopaedists, physiotherapists, etc… with
physiotherapists and orthopaedic surgeons from each hospital (Oran, Sidi-Bel-
the twinning project and national plan contributions;
- Future setting up of haemophiliac self-treatment
V Prof. J. SIBILIA: “During this meeting, we shared our knowledge,
-yearly evaluate the articulations clinical and radiological state, according to
the issue of our experience, but now we should start real training
the WHF reference criteria and indicate the necessary orthopaedic acts
activity. Through networking, I am sure that the haemophilia care
-contribute to synoviorthesis (chemical and radioactive) practice.
will progress in a warm and brotherly spirit thus conveying our
- For consultations; Bayer Laboratories (France) donated several follow-up orthopaedic files for the 3 University Hospitals
Inhibitor aspects of haemophilia : University Hospital of Oran (06/2007)
-- For synoviorthesis; Hexatrione (triamcinolone) donated by Daïchi Sankyo
V Dr A. FARADJI, Dr. C. COSTA (medical genetician, Creteil
Laboratories (France) and radiaoctive Yttrium-90 supplied by the Tlemcen
Hospital ,Paris) and Dr T. LAMBERT(Haemophiliac Centre of the
Kremlin Bicêtre Hospital , Paris) shared their experience with the West region haematologists.
Donation of material
V Update of the data register of the West Algerian haemophilia
1) Haemostasis reactives at University Hospitals of Oran and Sidi Bel Abbès (09/2006)
network: Oran 110, SidiBelAbbès 78, Tlemcen 54.
V Dr COSTA : « I was charmed by the kindness and simplicity of all
2) Continuous perfusion pumps at University hospitals of Oran and Sidi Bel Abbès (06/2007)
people I met during this short stay. I was welcomed and looked after
V. “ In the framework of the twinning between the Regional Centre for Haemophilia
in an exemplary manner and with a real professionalism. I was
Treatment of Strasbourg with Algerian Hospitals, specialised material for surgical interventions on haemophiliacs was offered yesterday to 2 Algerian orthopaedist
struck by the difficulties encountered by the medical staff in all fields,
surgeons participating in training at the orthopaedic surgery Centre (CCOM,
in particular in haemophilia. I admired the way medical doctors and
Strasbourg). Thanks to the LFB Company (French Laboratory of biotechnologies) Dr
nurses care for their patients while knowing what they could do but
Faradji, co-ordinator at the CRTH and president of the JOSSH Association (twinning
cannot due to the lack of means. Your work is a real support and
Oran-Sidi-Bel-Abbès for haemophilia) donated to Drs Medjahed (Oran University
their hope for the future is very encouraging.”
Hospital) and Hamdaoui (Sidi Bel Abbès University Hospital ) 2 continuous perfusion pumps for a secure distribution of anti-haemophiliac medicines during operations
Prophylaxis aspects of haemophilia : University Hospital of SBA (09/2007)
Strasbourg newspaper D.N.A 19/06/2007
V Dr A. FARADJI, Profs H. CHAMBOST and J. GOUDEMAND
3) Synoviorthesis medication at University hospitals of Oran and Sidi Bel Abbès (03/2008)
(Haemophiliac Centers of Marseille University Hospital and of Lille University Hospital,respectively), shared their experience with the haematologists of the West region.
V Prof H.TOUHAMI mentioned a multicentred study proposed to
Mediterranean countries by Laboratories France Biotechnology France, the primary objective, being to preventi any haemorragic
V Dr A. FARADJI and J.M. BOUCHEZ, representative of the French
accident and prevent arthropathy development in young
Association of Haemophiliacs were invited to a Workshop on
Administrative Aspects of Hemophilia Care (Algiers, 05/2007) organised by
V Interest for substitutive prophylaxis was underlined by Dr. K
the WFH and the Algerian Association of Haemophiliacs.
BENALLAL, paediatrician (Sidi bel Abbès Hospital University)
th representatives of the Algerian Health Ministry (Health General
who informed that 2 young haemophiliacs have already started
Director, Director of the National Blood Agency, Pharmacy Director), of the
Algerian Association of Haemophiliacs and of the Medical Committee of
V Dr R MESSAOUDI (paediatric department of the Oran
specialised Hospital CANASTEL) highlighted that setting up primary prophylaxis was a priority when reporting on advanced arthropathic lesions high rate in young haemophiliacs due to frequent lack of regular adequate substitutive treatment,.
V Pr H. CHAMBOST presented the 1994 WHO and WFH recommendations: “the main objective is to prevent articulation
V Contributing to setting up the haemophilia and haemorragic disorders centre of the West Algerian
bleeding and its consequences; to this end prophylaxis should be
region grouping the four Hospitals (Oran, Sidi Bel Abbès, Tlemcen and Bechar)
considered as the optimal treatment for severe A and B
V Enhancing arthropathy prevention measures (prophylaxis, synoviorthesis, synovectomy.)
” “This treatment should start between 1 and 2
year old and be pursued indefinitely
V Contributing to the planned orthopaedic surgeries for reducing the handicap duration
infrequent by 24%. Mechanical and infection events werereported in the following frequencies: rare 41.5%, infrequent41.5%, common or very common 17%. Baclofen withdrawalevents were rare in 65%, infrequent in 27%, and common in 8%‘Intrathecal baclofen use in children with spasticity – a physi-of respondents’ experience. No difference in reported compli-cations was found on the basis of exp
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