Cystic Fibrosis: An innovative approach to respiratory recovery is introduced for the first time in Greece!
Specialists have been asked by Iatronet about this innovative approach of respiratory recovery of patients with CF.
Posted: January 22nd 2016
Specialists have been asked by Iatronet about this innovative approach of respiratory recovery of patients with CF.
Posted: January 22nd 2016
Mr. Vogiatzis’ team from the Respiratory Recovery Unit of the “Sotiria” hospital, the specialized pulmonologists of the adult CF unit in the “Sismanoglio” hospital, as well as the group of young people working for Human Ability on the construction of the Breath Box were asked by Iatronet about this innovative approach of respiratory recovery of patients with CF.
Mr. Vogiatzis, Deputy Professor of Phycical Education and Sport Science UoA, Coordinator of the Respiratory Rehabilitation Unit of the European Respiratory Society (ERS) – Mr. Grapatsa, nutritionist in Sismanoglio – Mrs. Kalafati nutritionist trainee
When did you start working with CF patients for the first time?
The Respiratory Rehabilitation Program for adult CF patients started recently on May 2015 and the first relevant study is still in process. No official results have been actually collected yet, but according to the first observations the improvement of the patients’ respiratory function and their cardiorespiratory and muscle resistance is impressive. In fact, we are using for the first time an exercise program with short breaks in-between, which we believe will be a new step towards the rehabilitation of CF patients. We are namely taking breaks during the exercise, so that the patient can exercise with greater intensity and thus make the most out of the training.
The experience and the expertise however already existed, since this program is used for the last 15 years in the rehabilitation of patients with chronic respiratory insufficiency (CRI). These are mainly elderly people with very low respiratory reserves, just like the patients with CF. Therefore, when the young people from the Hellenic Cystic Fibrosis Association approached me, I understood immediately that there is an urgent need for physical and respiratory rehabilitation. Mostly because the majority of the patients in this specific group, who are facing such a serious respiratory problem, are very young and such a program could truly improve their life quality.
Mr. Koulouris, the director of the 1st university clinic in Athens immediately embraced this program and together we built the necessary team, in order to start our work right away.
The Respiratory Rehabilitation team during the ergospirometry test of the first group of patients (Mr. Anastasopoulos, exercise physiologist)
What do you think about “Breath box”?
Truth be told, cross-infection limits our potentials, although we and our colleagues who work in this program (exercise physiologists, physiotherapists etc.) are very eager and try to work things out. This wasn’t the case with patients with CRI and we were able to train a big number of patients simultaneously and in the same place. However the attending doctors of patients with CF from Sismanoglio, a hospital with which we are cooperating, explained that these patients need to be treated separately in a sterile environment. Thus, when the idea of “Breath Box” was originally presented to us, it seemed to solve those problems. It seems possible for the patients to go through this program, while the necessary security conditions are met. I immediately accepted the proposal to participate in this initiative, in order to find out, if this could be indeed the solution to our problem. Our questions however will be answered with the help of a prototype, which we will be very happy to host and test. Research is after all what we do as a university. We are aiming at the benefit of our patients and their security is our priority.
Mrs. Zeliou, an experienced and specialized physiotherapist from Sismanoglio is training the young physiotherapist V. Karapatoucha, as well as the patients in the right respiratory physiotherapy. This is a program of the Hellenic Cystic Fibrosis Association that runs parallel to the respiratory rehabilitation and maximizes the benefits of exercise.
We also asked the president of the Hellenic Cystic Fibrosis Association, Dimitris Kontopidis about this initiative:
For us patients the importance of the three-pronged approach of an adjunct treatment alongside with the medication was evident. Personalized training, respiratory physiotherapy and a special diet. We had to concentrate on the best preservation of our lungs, while we were waiting on the new innovative treatments based on our needs. We couldn’t give it a rest. The better our respiratory function is, the better are the expected results of the new treatments. What is once lost, can’t be brought back. This was also mentioned in the European CF Conferences and this was the reason why we also organized the same conference for the first time in Greece last May with the name “Physiotherapy, exercise and special diet against Cystic Fibrosis”. Moreover, we managed thanks to the help of our doctors from the Ippokratio University Clinic of the Aristotle University of Thessaloniki, Mrs. Hatziagorou and Mr. Tsanakas, to invite a German patient, Alexandra, who convinced as with her story that our newly set goal is effective and truly necessary. She reported namely that exercise alongside with physiotherapy and medication increased her respiratory function from 30% fev1 to 96%!
“To achieve the possible, you have to try the impossible!!!”. That was Alexandra Kramatz’ message to all her fellow patients with CF in Greece. Alexandra is a German patient with CF, who achieved something impossible: thanks to a specialized and personalized program of exercise combined with physiotherapy and medication she succeeded in increasing her respiratory function from 30% fev1 to 96,4% fev 1 within 5 years (May 2015, Athens).
After receiving a positive response from Mr. Vogiatzis’ team from Sotiria, we enriched the exercise program with respiratory physiotherapy. Pinelopi Zeliou, an experienced physiotherapist from the adult CF unit in Sismanoglio took up voluntarily the training of the patients, as well as of theyoung physiotherapist Vicky Karapatoucha.
The patients’ condition improved greatly and the waiting list grew bigger. Thus, the need to involve all of the patients, as well as the children in the exercise program and mainly its follow up created the idea behind our solution.
My architecture group from the National Technical University has been informed about CF and contributed to the public awareness rising about the disease. We have consequently decided to use this architectural expertise, in order to lose problems concerning chronic patients and the disease in general. The glass box/ cubicle was therefore a challenge and a chance to implement practically this knowledge. We discussed the subject with the patients and they were excited. Everyone was looking for a way to continue the exercise program. “Breath box” would be the solution to the problem. The “competition” between the patients’ results kept us as patients on the move. Having company, while exercising was a vital factor for the continuation of the exercise program, because this program demands discipline and insistence. The patients were supervised and motivated by an exercise physiologist. Therefore the only thing left was the approval of our attending doctors from Sismanoglio, since the adult patients were in immediate need of this innovation.
The doctors’ office at the adult CF unit in Sismanoglio: Mr. Igglezos, director of the unit – pulmonologist, Mr. Kotsifas – pulmonologist, Mrs. Diamantea – pulmonologist, Dimitris Kontopidis – president of the Hellenic Cystic Fibrosis Association
Mr. Igglezos, the director of the adult CF unit in Sismanoglio informed us:
“I always said that the medication alone is not the solution. Specialized physiotherapy and exercise should be included in the daily routine of the patients. I have been trying for a very long time to convince them about that. Patients shouldn’t rest their hopes only on the waiting for new medication and transplants. This of course, namely the integration of daily exercise and physiotherapy into the everyday life of the patients in Greece, takes some time. I think Breath Box goes hand in hand with this idea. The exact percentage of improvement, which the patients are to show through these programs, will be made public, after the scientific results are completed. Another aspect concerning this box/cubicle that needs to be dealt with properly is the avoidance of cross-infection between the patients. Because, truth be told, the patients have been careless about it. In the past we couldn’t offer them the appropriate conditions, but now that individual cubicles will be available, the patients will need to meet the security conditions.”
Mrs. Diamantea, the tenderer pulmonologist of the CF unit in Sismanoglio is observing closely the rehabilitation program together with Mr. Kotsifas, an auxiliary pulmonologist of the unit. The patients participating in the program are excited. We are also observing the program, in order to see, how we could support it scientifically in the best way. Moreover Mrs. Grapatsa, a nutritionist of the CF unit in Sismanoglio expressed a great interest in the program, since the right diet is of major importance for such a program.
