Patients Support HCFA-TEAM February 15, 2023

Patients Support

Personal spirometers

Since 2020 the Association has donated more than 300 personal spirometers to CF patients throughout Greece.

The test of spirometry in the hospital is a part of monitoring the respiratory function of patients with Cystic Fibrosis. Frequent monitoring is even more importan for CF patients in sever lung condition.

Personal spirometers are portable devices for monitoring patients’ respiratory function. They help CF patients to monitor their respiratory function on their own improving self-management of the disease. At the same time, they reduce patients’ frequent visits to the hospital, protecting them from cross infection.

The video with app demonstarion  here

* Spirobank Smart spirometers are approved by HCFA’s Scientific Committee.

Despite the the positive progress of Cystic Fibrosis, especially after the era of CFTR Modulators, some CF patients need oxygen therapy.

HCFA provides a portable oxygen concentrator for free to CF patients throughout Greece.

Patients who wish to use portable oxygen have to contact with the Association.

Oxygen Concetrator

A nebulizer is necessary for CF patients for the daily inhaled medications. HCFA has donated more than 40 nebulizers to CF patients throughout Greece.

Since 2021 the Association provides nebulizers to CF patients with no social insurance, as the National Organisation EOPYY approved the full reimbursment of  new generation “eflow” nebulizers and their consumables.

Patients who wish to obtain a nebulizer have to contact the Association.

Psychotherapy groups

Since 2022, the Association offers for free group cognitive behavioral psychotherapy to CF patients and their caregivers all over Greece.

The groups educate and empower CF patients and their caregivers in managing stress, anger, depressive mood, grief and strengthening assertiveness, functioning and reintegration into the society.

Patient groups include patients with Cystic Fibrosis over 18 years of age, while caregiver groups include parents, spouses-partners of patients, family members, etc.  Each cycle of the program lasts 3 months and meetings are held online once a week. The groups are coordinated voluntarily by the psychologist Dr. Dipl.-Psych. Stavroula Rakitzi, who we warmly thank for her voluntary offer to our community.

The results of the program demonstrate that group cognitive behavioral psychotherapy is an important part of the health and mental health of CF patients and their caregivers.

  • Results of the 1st pilot program in 2022 here
  • Results of the 2nd program in 2023 here
Monthly online coffee breaks support meetings

Since 2020 the Association has started organizing monthly online coffee breaks support meetings for the CF community (patients, caregivers, family) all over Greece.

The online coffee breaks give the chance to the members of our community all over Greece to get in touch with each other and have discussions about important issues about the disease. The participants are able to express their thoughts and concerns. They share their personal experience with CF and support each other, so that no one feels alone.

Coffee breaks take place once a month via zoom. The day and time of the meeting are announced every month on the Association’s website and social media a few days before it takes place.

Respiratory Rehabilitation Program

In 2014, before the launch of the 2nd innovative CFTR Modulator treatment, HCFA started supporting the respiratory rehabilitation program, which included specialized respiratory physiotherapy and individual exercise for CF patients. The program’s goal was to maintain the best possible condition of the patients and improve their respiratory function.

The program lasted from 2014 to 2016 and included two sub-programs supported by the Association. The first included adult patients in Athens, in the Respiratory Rehabilitation Unit, “Sotiria” Hospital, in collaboration with the “Thorax” Foundation and the Adult CF Unit of “Sismanoglio” Hospital.

The second included CF children in Thessaloniki and was carried out in collaboration with the 3rd Pediatric University Clinic of AUTH, the CF Unit of “Hippokrateio” Hospital, and the Faculty of Physical Education and Sport Science, AUTH.

The results were impressive since, after completing the program, most patients improved their FEV1 about 10%.

The results of the program were presented during the conferences “Physiotherapy & Exercise in Cystic Fibrosis”, organized by the Association in 2015 and 2016 in Athens and Thessaloniki.

CF clinicians and health scientists from Greece and abroad participated in the conferences, informing patients and their families about the value of daily specialized chest physiotherapy and individualized exercise and training them in physiotherapy techniques. Likewise, physiotherapy students and health professionals attended the sessions.