1. Living with Chronic Spontaneous Urticaria in Italy: A Narrative Medicine Project to Improve the Pathway of Patient Care
- Author
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Teresa Grieco, Maria Giulia Marini, Ornella De Pità, Filomena Bugliaro, Concetta Potenza, Rosita Saraceno, Mauro Cancian, Antonio Costanzo, Angelo Piccirillo, Luigi Reale, Katia Massaroni, Enrico Iemoli, Sara Trevisini, Carlotta Gurioli, Massimo Gola, Antonietta Cappuccio, Aurora Parodi, Luca Stingeni, Antonio Cristaudo, Oliviero Rossi, Rosanna Panebianco, Giacomo Caldarola, Alice Vignoli, Roberta Parente, Claudio Sciarrone, Tommaso Limonta, Marco Caminati, Sergio Di Nuzzo, and Serafinella P. Cannavò
- Subjects
medicine.medical_specialty ,media_common.quotation_subject ,Narrative medicine ,Quality of healthcare ,Quality of life ,Urticaria ,Adult ,Chronic Disease ,Emotions ,Female ,Humans ,Italy ,Male ,Narration ,Prevalence ,Surveys and Questionnaires ,Quality of Life ,2708 ,prevalence ,MEDLINE ,Alternative medicine ,narrative medicine ,Dermatology ,Disease ,Anger ,emotions ,030207 dermatology & venereal diseases ,03 medical and health sciences ,urticaria ,0302 clinical medicine ,Quality of life (healthcare) ,male ,italy ,Health care ,medicine ,Narrative ,humans ,education ,media_common ,education.field_of_study ,business.industry ,adult ,General Medicine ,narration ,female ,030228 respiratory system ,quality of healthcare ,quality of life ,Family medicine ,surveys and questionnaires ,Settore MED/35 - MALATTIE CUTANEE E VENEREE ,business ,chronic disease - Abstract
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.
- Published
- 2016