Living with Chronic Spontaneous Urticaria in Italy: A Narrative Medicine Project to Improve the Pathway of Patient Care
Antonietta Cappuccio, Tommaso Limonta, Aurora Parodi, Antonio Cristaudo, Filomena Bugliaro, Serafinella P. Cannavò, Oliviero Rossi, Carlotta Gurioli, Alice Vignoli, Roberta Parente, Enrico Iemoli, Giacomo Caldarola, Ornella De Pità, Sergio Di Nuzzo, Mauro Cancian, Concetta Potenza, Marco Caminati, Luca Stingeni, Rosita Saraceno, Sara Trevisini, Angelo Piccirillo, Claudio Sciarrone, Rosanna Panebianco, Massimo Gola, Antonio Costanzo, Teresa Grieco, Katia Massaroni, Luigi Reale, Maria G. Marini
Chronic spontaneous urticaria (CSU) is perceived as a difficult to manage disease with negative impact on quality of life. The aim of this study was to highlight how to improve the care of people with CSU, using the methodology of narrative medicine. From June 2014 to March 2015, CSU-diagnosed patients and their physicians were asked to record their experiences of the condition in writing. Fourteen healthcare teams participated: 41% considered CSU as a challenge to overcome, while 22% experienced CSU as a big commitment. The number of professional involved was evaluated as insufficient in 11 hospitals. Seventy-five percent of the 190 Italian patients had visited 3 or more physicians before receiving a final diagnosis, with a perceived waste of time and resources. The therapeutic pathways were described as unsatisfactory in 83% of cases. As a result, anger and frustration were life-dominant emotions in 92% of patients. The critical points of the care pathway are related to organizational issues and lack of awareness.