Living with Chronic Spontaneous Urticaria in Italy: A Narrative Medicine Project to Improve the Pathway of Patient Care.
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.
Fondazione ISTUD, Piazza IV Novembre 7, IT-20124 Milano, Italy. acappuccio@istud.it.
Antonietta
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Cappuccio
Tommaso
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Limonta
Aurora
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Parodi
Antonio
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Cristaudo
Filomena
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Bugliaro
Serafinella P
SP
Cannavò
Oliviero
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Rossi
Carlotta
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Gurioli
Alice
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Vignoli
Roberta
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Parente
Enrico
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Iemoli
Giacomo
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Caldarola
Ornella
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De Pità
Sergio
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Di Nuzzo
Mauro
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Cancian
Concetta
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Potenza
Marco
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Caminati
Luca
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Stingeni
Rosita
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Saraceno
Sara
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Trevisini
Angelo
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Piccirillo
Claudio
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Sciarrone
Rosanna
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Panebianco
Massimo
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Gola
Antonio
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Costanzo
Teresa
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Grieco
Katia
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Massaroni
Luigi
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Reale
Maria G
MG
Marini
D000328:Adult; D002908:Chronic Disease; D004644:Emotions; D005260:Female; D006801:Humans; D007558:Italy / Q000453:epidemiology; D008297:Male; D033262:Narration; D015995:Prevalence; D011788:Quality of Life; D011795:Surveys and Questionnaires; D014581:Urticaria / Q000453:epidemiology / Q000523:psychology* / Q000628:therapy*