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Improving Cleft Care In Romania Through Collaborative European Projects

Editorial

Radu-Iulian Spataru
Emergency Clinical Hospital for Children „Maria Sklodowska Curie” Bucharest

 

 

In the last decade, cleft care in Romania has made significant steps towards progress and innovation. An important role in this process is our consistent collaboration along with the exchange of knowledge and experience with foreign partners through several European projects. Therefore, we came together and helped extend the existing European network of cleft professionals, so we can learn from each other and provide a better care for cleft patients.

Our dedication to care for children with cleft lip and palate at the Emergency Clinical Hospital for Children „Maria Sklodowska Curie” in Bucharest, started many years ago with Prof.Dr. Pesamosca who, over the years, gained a broad experience. Since 1984, the surgical protocol for cleft palate has been based on the Von Langerbeck principles with children being operated between 18 and 24 months. The delayed repair had minor disturbances on facial growth but in the cases with wide cleft defects, a high percentage of fistulas were noted and also abnormal speech due to short length and limited mobility of the soft palate.

In 2009, the protocol was replaced with the Gothenburg Delayed Hard Palate Closure (DHPC) technique. The transfer to the DHCP technique was performed in steps. We visited the cleft team in Gothenburg and the cleft team from Gothenburg (surgeons - Hans Mark and Jan Lidia, speech therapists, orthodontics) visited the cleft team in Bucharest twice every year for 5 years. This has been more than a teaching process. We set the first building bricks for a strong collaboration, the starting point to create a “twining cleft center” with a multidisciplinary team approach to treat patients with cleft lip and palate in Romania. A series of workshops were organized with national and international participation. During one of such meeting, together with colleagues from Iasi, Brasov, Timisoara and Craiova, the Romania Cleft Society was born in 2012.

The efforts to care and promote a multidisciplinary team continued with a multi institutional cooperation project called “Development of multidisciplinary innovative strategies for the care of the Romanian individuals with cleft lip and/or palate” having as partners the University of Medicine and Pharmacy “Carol Davila” from Bucharest, University of Oslo and Romania Cleft. The role of this project was to understand and apply the multidisciplinary approach of cleft lip and palate treatment, protocols of good practice taught by the members of the Cleft Team of University of Oslo (one of the most experienced cleft team around the globe); to follow and implement the Norwegian follow-up strategies of the cleft patients, to elaborate and to implement the management strategies of lip and palate malformations in Bucharest and the main centers in Romania. The result of this project was the elaboration of a Romanian guide of good practice regarding the multidisciplinary approach in cleft lip and palate called “Despicaturile labio-maxilo-palatine: diagnostic si tratament multidisciplinar”, an informative guide for the Romanian parents “Ingrijirea copiilor cu despicaturi labio-maxilo-palatine” and the organization of an international conference in Bucharest “Development of Multidisciplinary Innovative Strategies for the Care of the Romanian Individual with Cleft Lip and/or Palate”. This was followed by a COST European Cooperation in Science and Technology project called “Appearance Matters” with the aim to ensure that children born with orofacial clefts and other cranio- facial conditions receive optimum multidisciplinary care enabling them to grow up like any other children and attain equal status within their society. The project involved 34 countries over a 4 years period.

The 2nd COST project – European Cleft and Craniofacial Initiative for Equality in Care, with participation of 20 European countries including Romania has the aim to ensure that children born with orofacial clefts and other craniofacial conditions receive optimum multidisciplinary care enabling them to grow up like any other child and attain equal status within society. The Action will work with COST Inclusiveness Target Countries where limited or no national protocols exist in cleft and craniofacial care and will, via healthcare research, develop health-integrated networks which will manage and oversee the development of cleft and craniofacial services.

Currently, we became partners in 2 other projects: ERASMUS + “Cutting Edge Training - Optimizing medical outcomes for patients undergoing appearance altering procedures via innovative training of healthcare professionals” and “Early care training programme for health professionals working with children born with orofacial cleft”. The 1st project is based on the observation that there is a substantial need for the development of high quality work in the healthcare sector especially in the care of patients undergoing appearance altering procedures that results in scarring and body form changes (such as cancer, burns, limb loss, mastectomy, plastic surgery, birth defects). The paramount need to train healthcare professionals in the psychological and psychiatric aspects of care is crucial for the individuals undergoing appearance altering procedures.

The 2nd project has the aim to develop an early training programme for health professionals working with children with clefts and other craniofacial conditions. The participants will learn the necessary specialist skills to assess the infant, to determine whether there are any other associated anomalies needing specialized support and intervention, and formulate a treatment plan, that allows the infant to thrive normally.

During the same time other centers in Romania such as Brasov, Timisoara and Craiova became actively involved in raising awareness between healthcare professionals regarding multidisciplinary treatment of cleft patients. As an example, in 2015 Eduard Paraschivescu, a well renowned orthodontist, organized on international workshop in Timisoara and in 2017 during the National Conference for Pediatric Surgeons, an all-day session was dedicated to the care of patients with cleft lip and palate which was attended by a large number of international experts in cleft care.

In the last years our active involvement to care for children with cleft lip and palate has increased considerably with high impact on the life of our patients. The birth of Romania Cleft has been a turning moment in our progress pathway, but it needs to be constantly sustained by collaborations between all other centers from the country. We need to promote multidisciplinary treatment, continue to develop partnerships with European centers and support the long term needs of children and their families.