The original Eurocleft Cohort project, an intercentre comparison study of six European centres initiated in 1986, revealed dramatic differences in outcomes for children with UCLP and was a powerful stimulus for improvement in the services of respective teams (1). Five of the centres continued follow-up until age 17 years. The study developed a methodology to compare practices and indicated the potential for wider European collaboration including opportunities for the initiation of clinical trials.
This was recognized by the European Commission who provided funding in the BIOMED II programme, and subsequently the INCO COPERNICUS programme (extending funding to teams from Central and Eastern Europe). The project ‘Standards of Care for Cleft Lip and Palate in Europe’ ran between 1996 and 2000 and aimed to promote a broad uplift in the quality of care and research in the area of cleft lip and palate (2).
Each European country was represented by an expert in the field of cleft care with a good knowledge and general overview of cleft care organization in their country. Germany had Eastern and Western representatives, Italy had representatives for North and South. The Netherlands, Czech Republic, and Portugal also had two representatives. National representatives were chosen on the basis of nomination by their national colleagues and a spread of clinical specialties in order to secure a multidisciplinary breadth to the network (Table 1).
|Austria||Hans Kärcher||maxillofacial surgeon|
|Belgium||Albert de Mey||plastic surgeon|
|Bulgaria||Youri Anastassov||plastic surgeon|
|Czech Republic||Jitka Vrtišková||plastic surgeon|
|Czech Republic||Ziva Müllerova||orthodontist|
|Denmark||Anja Bau||speech therapist|
|Estonia||Siiri Hanstein||maxillofacial surgeon|
|Finland||Jorma Rautio||plastic surgeon|
|France||Chantal Trichet||speech therapist|
|Germany||Karsten Gundlach||maxillofacial surgeon|
|Iceland||Ólafur Einarsson||plastic surgeon|
|Italy||Ferruccio De Stefano||plastic surgeon|
|Latvia||Biruta Barkane||maxillofacial surgeon|
|Netherlands||Emmy Konst||speech therapist|
|Netherlands||Anne Marie Kuijpers-Jagtman||orthodontist|
|Poland||Kazimierz Kobus||plastic surgeon|
|Portugal||Maria João Alves de Castro||orthodontist|
|Portugal||António Capelo||paediatric surgeon|
|Slovak Republic||Irena Klímová||orthodontist|
|Slovenia||Vesna Kozelj||maxillofacial surgeon|
|Spain||Gonzalo Gonzalez-Landa||paediatric surgeon|
|Sweden||Jan Lilja||plastic surgeon|
|UK||Liz Albery||speech therapist|
|Ukraine||Leonid Kharkov||maxillofacial surgeon|
- a register of services in Europe, with details of professionals and teams involved in cleft care, service organization, clinical protocols and special facilities for research;
- a set of common Policy Statements governing clinical practice for European cleft teams;
- Practice Guidelines describing minimum recommendations for care that all European children with clefts should be entitled to;
- recommendations for minimum records that cleft teams should maintain;
- encouragement for teams to compare outcomes.
The recommendations were subsequently adopted by the World Health Organisation (3).
The survey revealed a wide diversity in models of care and national policies as well as clinical practices in Europe. (Of the 201 centres that registered with the network, the survey showed 194 different protocols being followed for unilateral clefts).
Subsequently, the European Commission’s Framework V Programme (from 2000 to 2005) provided funds to initiate the Eurocran Project. A Good Practice Archive was developed to promote intercentre comparisons, for teams in Europe and beyond. Partnership in cleft lip and palate genetic research was funded (4), and partial funding was made available to the Scandcleft Randomised trials (5).
Achieving optimal standards of cleft care across Europe remains an outstanding challenge. The basic principles of care described in the Policy Statements and Practice Guidelines (Appendices I and II) are hardly revolutionary, indeed they describe what most individuals (including those in clinical practice or government) would wish for their own children, regardless of country of birth. The potential strength of a European network is that examples of good practice can be more easily shared, challenges of a general nature can be more easily recognized and understood, and solutions that have been successful in one country can be applied elsewhere.
The need for this is obvious if one considers the fact that today the variation between centres regarding sequence, technique and timing of cleft repair could hardly be greater. On the other hand, some obstacles, especially those arising from specific local circumstances and personalities, need specific local solutions. Among the difficulties mentioned were:
- personal egotism of individuals unwilling to discontinue the practice of treating a few children each year;
- competition between specialities for pre-eminence in the field, e.g. plastic-vs- maxillofacial-vs-paediatric-vs-ENT surgery;
- local pride, with every hospital, town or region desiring its own small team or wish to have local service;
- lack of clinical leadership;
- necessity for teaching hospitals to cover a spectrum of clinical practice;
- lack of responsiveness in the health authorities at local and national level.
All of the above problems confronted the UK until a national review was instigated by the government Clinical Standards Advisory Group (CSAG, 1998). The review included a national survey that revealed that Britain’s fragmented, decentralized services were achieving a low standard of clinical care in some areas. As a result the Government instructed regions to provide care from a single regional centre. Each of these should have a fully comprehensive specialist team, typically with two to three surgeons, each responsible for not less than 40 new cases for primary surgery per year. In this instance, government interest has been essential in trying to improve services when voluntary methods failed (6).
Cleft services, clinical protocols and research have undoubtedly suffered from unrestricted development across Europe. The chances that a child born with a cleft tomorrow in Europe will receive the best care possible depends almost entirely upon where he or she is born. Attainment of even minimum standards of care remains a major challenge in some communities and both, the will to reform and a basic strategy to follow are overdue. Hopefully, the foundation of ECPCA will provide new energy and commitment to work as a partnership determined to improve the standards and availability of cleft care across Europe.
- Shaw WC, Brattström V, Mølsted K, Prahl-Andersen B, Roberts CT, Semb G. The Eurocleft study: intercenter study of treatment outcome in patients with complete cleft lip and palate. Part 5: discussion and conclusions. Cleft Palate-Craniofac J 42:93-98, 2005.
- Shaw WC, Semb G, Nelson P, Brattström V, Mølsted K, Prahl-Andersen B, Gundlach KK. The Eurocleft project 1996-2000: overview. J Cranio-Maxillo-Fac Surg 29:131-140; discussion 141-132, 2001.
- World Health Organization. Global strategies toward reducing the health-care burden of craniofacial anomalies. Report of WHO meetings on International Collaborative Research on Craniofacial Anomalies. WHO Human Genetics Programme, 2002.
- Peter A Mossey, Julian Little, Regine Steegers-Theunissen, et al. Genetic interactions in non-syndromic orofacial clefts in Europe – EUROCRAN study Cleft Palate-Craniofac J 54: 623-630, 2007.
- Cleft Palate-Craniofacial J Gunvor Semb, Hans Enemark, Hans Friede, et al. Scandcleft randomised trials of primary surgery for unilateral cleft lip and palate: 1. Planning and management. Journal of Plastic Surgery and Hand Surgery 2017;51:1-12 .
- Sandy JR, Williams AC, Bearn D, Mildinhall S, Murphy T, Sell D, Murray JJ, Shaw WC: Cleft lip and palate care in the United Kingdom–the Clinical Standards Advisory Group (CSAG) Study. Part 1: background and methodology. Cleft Palate-Craniofac J 38:20-23, 2001.