Information Workshop on Cystic Fibrosis

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Information Workshop on Cystic Fibrosis HCFA TEAM November 25, 2014

Information Workshop on Cystic Fibrosis

The Hellenic Cystic Fibrosis (H.C.F.A.) successfully organized the established Cystic Fibrosis Workshop on Saturday, November 22nd, from 09:30 to 18:00 with the participation of 24 speakers from Greece and abroad.

This workshop was the culmination of a week of activities organized by the H.C.F.A. on the occasion of the European Cystic Fibrosis Week 2014.

A large number of people attended with interest, which was structured in thematic sections. After the greeting of Mr. Yannis Spinos and Mrs. Roula Tzonou, presidents of the cooperating Panhellenic C.I. Association “Hellenic Society for Fibrotic Cystic Disease” and the “Association of Parents of Children with C.I. in Northern Greece”, the five sections followed with question breaks and open discussion.

In the first session,

presentations were shown by the Cystic Fibrosis scientific community from hospitals all over Greece and abroad on the importance of control and prevention of infections in C.F. patients and inhaled antibiotics. More specifically, Mr. Athanasios Kaditis, Assistant Professor of Pediatrics – Pediatric Pulmonology at the 1st Pediatric Clinic of the University of Athens gave an extensive description of the microbiology of lung infections while Mr. Konstantinos Kotsifas, Pulmonologist and External Associate of the Adult Cystic Fibrosis Unit of the “Sismanoglio” Hospital spoke about inhaled antibiotics with special reference to upper respiratory tract infections. Of particular interest was the presentation of Mrs. Mary Carroll, Director of the Adult Cystic Fibrosis Centre of the “Southampton NHS” Hospital from the United Kingdom, who showed us in detail the ways of prevention of infection of the patients they have adopted, giving the Greek colleagues the useful and practical instructions. She also stressed that the social exclusion of patients from the decision making centres cannot be considered as a way of protecting them from infectious diseases.


The second section,

focused on the topic of nutrition, which is an important factor in improving health and survival in C.F. and on C.F. Diabetes.The topic was addressed by Mrs. Maria Fotoulaki, Assistant Professor of Pediatric Gastroenterology, Papageorgiou Hospital. During this section, the video for children “getting to know Fanis” was presented as a tool for informing children, both patients and non-patients, about C.F., both for parents with sick children and for teachers, while at the same time the topic of psychosocial care for children was presented by Mr. Konstantinos Kotsi, Child Psychiatrist, “Agia Sophia” Children’s Hospital. With great pleasure, we attended the presentation of Mrs. Araxi Matossian, psychologist – psychotherapist, of the Adult Reference Center K.I. of the University Hospital “Erasme”, Brussels and member of the European Group of Special Psychosocial Interest C.F. of Belgium, who analyzed the appropriate psychosocial Care to be provided to Adult patients of the disease. This session was closed by Mrs. Angeliki Papadopoulou, Physiotherapist, of the Hospital “Sismanoglio”, presenting the different techniques and physiotherapy aids on behalf of the physiotherapy team of the Adult C.F. unit of Sismanoglio.


In the next section,

guests from Southampton NHS, England, Mrs Mary Carroll and Mrs Claire Oliver, social worker at the same hospital, analysed the importance and challenges of the smooth transition of young patients into adulthood, presenting the successful “Ready Steady Go” smooth transition programme they have adopted in England, which is a model action initiative for patients with other rare diseases facing the same difficulties. The audience was delighted to hear that in collaboration with the Association and Greek doctors they will proceed to translate and adapt it for Greek patients. Afterwards, a detailed presentation of the results of the project for the linking of Sismanoglio with Southampton NHS in England was given by Mrs. Filia Diamantea, Attending Nurse A’ of the 3rd Pulmonology Clinic of the Hospital “Sismanoglio” who will take over the Unit and Mrs. Anna Tzani, Head Nurse of the Adult C.F. Unit in the same hospital. They enthusiastically shared with us their experiences from the 15 days of hospitality and their intentions to implement several measures directly in the Unit at the “Sismanoglio” Hospital in order to improve specialized health services with the simultaneous involvement of more specialties. At the end, they renewed their cooperation appointment, thanking jointly the H.C.F.A. for its contribution. The President of the Hellenic Association of C.F. Mr. Spinos congratulated them for their work by offering them commemorative gifts.


The discussion continued on the issue of compliance and the important role of the specialist nurse in the patient with C.F. with a detailed presentation of the needs and challenges by Mrs. Anna Tzani, Head Nurse of the C.F. Adult Unit at “Sismanoglio” Hospital, Mrs. Filia Diamantea, Attending Nurse A’ of the 3rd Pulmonology Clinic, at the same hospital and Mrs. Varvara Boutopoulou, RN at “Attikon” Hospital. The speaker of the module, Mr. Konstantinos Priftis, Assistant Professor of Pediatrics-Pediatric Pulmonology at the 3rd Pediatric Clinic of the University of Athens and the University Hospital “Attikon”, with whom they collaborate at the C.F. clinic of the same hospital, was also present at the discussion.

The patients who attended the conference showed particular interest in the topic of intravenous home therapy, which was presented by Mrs Athina Tzara, Home Care Nurse at the “Sismanoglio” Hospital. Naturally, the main issues raised concerned both the safety and legal coverage of this practice, the importance of proper information and patient compliance with the nurse’s instructions and the role of the state in such an approach.

The discussion became even more intense on the vitally important issue of transplants. On this topic, we had the pleasure of hearing from people who work on this issue on a daily basis. In particular, Mr. Manos Chimonis, as an External Associate – Translator, of the AKH Vienna Transplant Center, in Austria and Mrs. Toni Papageorgakopoulou, Secretary of the Adult Cystic Fibrosis Unit, at the “Sismanoglio” Hospital, who explained and clarified the correct procedure to be followed by the patient interested in transplantation and answered questions from the audience. The need for the secretary to remain in the C.F. Unit of the Sismanoglio was also stressed, as her contribution, in the past year, translated into almost tripling the pre-transplant checks in Austria, following the Association’s visit the previous year, which coordinated and recorded the problems that had arisen, as confirmed by Mr. Chimonis.

The next discussion focused on Clinical Trials and Recording, with the European registry as an essential tool, sparked a lively debate during the presentation of the positive developments of the issue by Mrs.Elpida Hatziagorou, Lecturer of Pediatric Pulmonology, at the Cystic Fibrosis Unit of the 3rd Pediatric Clinic of the Aristotle University of Thessaloniki, and Mr. Kontopidis (Vice President of the Association) described the methodology followed for this positive progress, both with the catalytic contribution of the Association and with the excellent cooperation of Mr. Kaditis and the Management of the Aghia Sophia Children’s Hospital, as well as Mrs. Hadjiagorou and Mr. Iglesos, Director of the C.I. Unit of the “Sismanoglio” Hospital. It was reported that, as all indications suggest, there will soon be full national participation. The session ended with a description of the procedures regarding the circulation and waiting for new treatments by Mrs. Loukou, Director of the Cystic Fibrosis Department of the “Agia Sophia” Children’s Hospital.

The end of the Workshop,

followed a lively discussion on the topics presented and at the same time, an update on the successful actions of the Hellenic Cystic Fibrosis Association in 2014.At the same time, the Association presented the new target actions for the coming year, including, among others, the “Each breath” information campaign, the innovative e-shop for donations www., the project for Home Respiratory Physiotherapy, the continuation of the linking action of the Adult Units of Cismanoglio – Southampton NHS, the project for the European Registry and the methodology and strategy followed to achieve years of requests in such a short time.