FFC#25/2019

Patient Engagement in Cystic Fibrosis: a cross-sectional multi-stakeholder study

FFC#25/2019

Patient Engagement in Cystic Fibrosis: a cross-sectional multi-stakeholder study

PRINCIPAL INVESTIGATOR

Rosaria Casciaro (IRCCS Istituto Giannina Gaslini, Centro Fibrosi Cistica, Genova)

Partner

Guendalina Graffigna (Dip. di Psicologia – Engage Minds Hub Center, Università Cattolica Sacro Cuore, Milano)

RESEARCHERS

10

CATEGORY

AREA 5 Clinical and Epidemiological research

DURATION

1 year

GOAL

€ 36.000 €

RESULTS

Most of the 100 patients involved showed good involvement with low levels of anxiety and depression. In addition to patients, 12 parents and 4 doctors were submitted to the questionnaire. The quality of the relationship between patient and doctor was satisfactory for the majority of the sample involved in the study. The majority of the patients’ sample reported low/moderate level of adherence to treatment. The interviews with 23 patients and 12 parents revealed common factors, such as: 1) the double identity of person and patient; 2) the strong relationship with the medical team; 3) the uncertainty of the future; 4) therapies seen as a burden but also a source of hope. The work of the researchers suggest that clinical practice can be improved and the active involvement of patients could offer the pathway to do it.

OTHER RESULTS

FFC#1/2023

Tezacaftor, one of the components of Kaftrio, induces an accumulation of dihydroceramides both in vitro and in vivo in animal models

FFC#4/2023

Pseudopaline–aztreonam conjugates exhibited enhanced antimicrobial activity against Pseudomonas aeruginosa compared to aztreonam alone

FFC#10/2023

Several drugs already approved for human use inhibit the growth of P. aeruginosa, its virulence, or its ability to form biofilms in vitro