Abstract
Introduction: Cystic Fibrosis (CF) is a chronic and hereditary pathology that represents a serious health problem and a major challenge for healthcare services.
Its complex treatment and care requires the involvement of the family from diagnosis, throughout life. The diagnosis of this pathology, is performed at neonatal stage or infancy in the heel test, but not always, in all LMIC countries.
The inclusion of new drugs such as modulators (can be prescribed for patients with specific mutations) are changing the lives of affected people, but they are not yet available in all countries, particularly LMICs and their use does not imply the abandonment of the other pillars of treatment, essential to improve quality of life.
In Latin America, a lack of trained healthcare professionals specialized in disease management and treatment, scarce resources and poor understanding in patient- families mean new initiatives for integral care in virtual settings are critical .
Method: 41 people with CF were recruited through the social networks of the Lovexair Foundation. For 6 months, patients & family members were monitored by a respiratory physiotherapist specialized in virtual care support for CF through the HappyAir Digital Ecosystem; a minimum of 3 individual online interviews were conducted with the patients. In addition, they had access to specific educational content on the most important aspects of behaviour change, self-care in disease management; regularly registering their progress ; participated in social group sessions and attended webinars with various specialists, in the field of pulmonology, psychology, nutrition and physiotherapy. Both at the beginning and at the end of the programme, the following aspects have been assessed:
- QoL: EURQOL-5D
- Adherence to inhaled therapy: TAI Test
- Physical activity: IPAQ test
- Dyspnoea: mMRC scale
Results: The results obtained when comparing the initial and the final assessment are as follows:
- 66% reported being in good health, compared to 56% at baseline. There was an 8% reduction in those who considered they had a health problem and a 10% reduction in those who initially reported poor health.
- Good adherence to inhaled therapy increased by 12% at the end , while poor adherence decreased by 27% and intermediate adherence by 15%.
- Daily sitting time was reduced by more than one and a half hours, while patients' average daily walking time increased by 5%.
- The percentage of patients with very severe, severe or moderate dyspnoea decreased
For the last evaluation it was not possible to connect with all patients due to communication problems in these countries.
Conclusion: Despite the difficulties encountered and based on the results of this program, it appears that implementing a virtual care program through the Happyair Digital Ecosystem and the Respiratory Physiotherapist, improves quality of life, adherence to inhaled therapy and the sensation of dyspnea in people with Cystic Fibrosis. In addition, it increases daily physical activity time and reduces sedentary lifestyles.