Patients’ images of illness «An iron cage that grips your chest and don’t let your breath; Suffocating into the fog, a non-life, drown in the water; Going outside for me is like a dream…»… but also the ones written by relatives: «A closed snug, little and dark…I saw my mother hobble… a total claustrophobia…; a sparrow that can’t fly but shakes his wings without success». Those the most representative and evocative metaphors utilized by patients and relatives, chosen and showed during the FARO project.
The FARO project – Lighting up through COPD narratives – has been developed by ISTUD Foundation for Chiesi Group. It was a narrative medicine research with the aim of highlighting patients’, relatives’ and clinicians’ voices, so involved all points of view of the healthcare of Chronic Obstructive Pulmonary Disease experiences. The FARO project collected in Italy 350 testimonies, highlighting different topics: firstly, an insufficient awareness of patients’ illness condition could be connected with the difficulties of a communicative inadequate name, complex to understand, according with patients’ and clinicians’ voices; secondly, the strong relationship between the onset of disease and his causes, like smoking, was confirmed also through metaphors that expressed clearly patients’ fear of crying for air; finally, the project showed a massive impact of COPD in terms of job renounces and financial loss. A further problem involved patients’ therapeutic adherence and clinicians’ strategies to improve it. On 11th of October, the whole research and its results was showed during a press conference entitled: “Suffocating into the fog – Chronic Obstructive Pulmonary Disease, a nearly unknown disease but one of the first cause of death in the world”.
Data emerged by the research, presented by Maria Giulia Marini, director of the Healthcare&Well-Being area of ISTUD Foundation, clarified how this pathology, unknown by the public and by the same patients, is so damaging for patients’ and families’ daily living with COPD: «When we talk about relationship between diseases and working world, we could see that COPD negatively impacted on their working activities in 49% of cases and in a further 20% it caused even a job dismissal. In 70% of cases, patients were assisted by relatives and 16% of those spent more than 8 hours per days for the caregiving activity, so also relatives often got negative consequences at work. About the smoking problem, 60% of interviewed had stopped it after the diagnosis while 20% of people with COPD have never attribute their illness to cigarettes. Lastly, the term COPD is extremely complex and barely communicative; indeed 89% of healthcare professionals declared to agree with its inefficacy».
Nowadays, research is one of the most present and important tool. Marco Zibellini, Medical Director of Chiesi, explained why more than 20% of the company investments are addressed to this sector: «Knowing how people live their illness, how this disease influences their lives is fundamental for us. We feel research as a must, also in order to develop better products». COPD, an acronym, a strictly technical terminology referred to a pathology not very “popular” and easily understandable. Stefano Centanni, pulmonologist at the San Paolo and San Carlo Hospital of Milan, reported impressive data that showed how this disease is little-known: «Recent data estimates that only 11% of subjects know what this disease is, although the mortality connected to the pathology are extremely elevated. Actually, more than 3,5 million of Italians has COPD, but many of them don’t’ know to be affected to it because symptoms are often underestimate until their worsening».
Patient with short breath, the general medicine physician and adherence: those are the main topics illustrated by Saffi Giustini, General Medicine Physician at the Montale’s (PT) district that also title in this way his entire speech: «COPD isn’t a disease typical of only old people, but it could involve also young adults. Maybe a patient that had started with smoking at the age of 15-16, could then obtains a shocking diagnosis of COPD at the age of 30-35». In addition, Professor Giustini explained that causes of the low therapeutic adherence reported in the project could be several: from the patient’s inability of self-management, to the doctor-patient communication’s bias, from the sick person’s fear of potential or inevitable collateral effects, to his un-perception of “sick”, especially with such a silent disease.
Concluding, the need for a better adherence remember the seriousness of this pathology, the importance of highlighting this “phantom disease” and how fundamental is making COPD knowledge emerge through a new project of awareness, prevention and hope. This concept was exposed Salvatore D’Antonio, President of the Italian Association of COPD Patients Onlus. Lastly, Paolo Banfi, pulmonologist at the Don Gnocchi Foundation, lauded the tool of Narrative Medicine applied in this research. For him, indeed there’s a communication problem at the base of our society, there’s critical situations connected with the difficulty of creating empathy, of good dialogue with patients, and difficulties with the time dedicated to the others: «The COPD patient is very fragile, he needs a 360° attention».
The entire project was sustained by the most important scientific societies in the field of pulmonology (SIP, AIPO), of primary care (SIMG, FIMMG) and by citizens’ and patients’ associations (Onlus BPCO, Federasma e allergie). The research was developed by the members of the Healthcare Area of ISTUD Foundation, among which Maria Giulia Marini, Valeria Gatti and Luigi Reale.
