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.

Narrative Analysis of the Impact of COVID-19 on Patients with Chronic Obstructive Pulmonary Disease, Their Caregivers, and Healthcare Professionals in Italy.

Purpose: The COVID-19 pandemic has disrupted many lives, including those of people suffering from chronic obstructive pulmonary disease (COPD) and their caregivers. The main aim of this study was to use narrative medicine, a validated approach promoting quality of care to explore how the COVID-19 pandemic impacted the quality of care, quality of life, psychological factors and social factors of people affected by COPD and their caregivers and healthcare professionals (HCPs). A secondary aim was to explore the role of telemedicine in combating isolation and providing access to care. Methods: A cross-sectional observational narrative medicine study was conducted between July and November 2020 across Italy. An online semi-structured questionnaire with a narrative plot was completed by 146 participants (79 COPD patients, 24 caregivers, and 43 HCPs). Narrations were analyzed with descriptive statistics and evaluated using NVivo 11 software to break down the text and identify recurring themes and major semantic clusters. Results: During the first lockdown, 58.22% of responses from COPD patients indicated terror, fear and/or apprehension; at reopening, this figure was 35.44%. Among caregivers, these figures were 100% at first lockdown and 45.83% at reopening. The metaphors most commonly used by patients to describe COPD and COVID-19 were monster and murderer, respectively. Patients described their homes more often as clean and lonely than as offering no shelter. The narratives of 42 COPD patients (45.2%) described coping. Only 12.6% of COPD patients reported regular access to medical visits during lockdown, while 59.1% of general practitioners and pulmonologists reported using telemedicine, which was perceived as satisfactory by both patients and caregivers. Conclusion: It is relevant to aim for a multidisciplinary and multilevel system of care that empowers telemedicine and integrates specific psychological support programs for COPD patients and their caregivers.

Consensus communication strategies to improve doctor-patient relationship in paediatric severe asthma.

BACKGROUND: Asthma is a chronic inflammatory disease that is very common among youth worldwide. The burden of this illness is very high not only considering financial costs but also on emotional and social functioning. Guidelines and many researches recommend to develop a good communication between physicians and children/caregiver and their parents. Nevertheless, a previous Italian project showed some criticalities in paediatric severe asthma management. The consensus gathered together experts in paediatric asthma management, experts in narrative medicine and patient associations with the aim of identify simple recommendation to improve communication strategies. METHODS: Participants to the consensus received the results of the project and a selection of narratives two weeks before the meeting. The meeting was structured in plenary session and in three working groups discussing respectively about communication strategies with children, adolescents and parents. The task of each working group was to identify the most effective (DO) and least effective practices (DON' T) for 5 phases of the visit: welcome, comprehension of the context, emotions management, duration and end of the visit and endurance of the relationship. RESULTS: Participants agreed that good relationships translate into positive outcomes and reached consensus on communication strategies to implement in the different phase of relationships. CONCLUSIONS: The future challenges identified by the participants are the dissemination of this Consensus document and the implementation of effective communication strategies to improve the management of pediatric asthma.

Management of chronic urticaria in children: a clinical guideline.

The aim of this guidance is to provide recommendations to clinicians and other interested parties on chronic urticaria in children. The Italian Society for Pediatrics (SIP), the Italian Society for Allergy and Immunology (SIAIP), the Italian Society for Pediatric dermatology (SIDerP) convened a multidisciplinary panel that prepared clinical guidelines for diagnosis and management of chronic urticaria in childhood. Key questions on epidemiology, natural history, diagnosis, and management were developed. The literature was systematically searched and evaluated, recommendations were rated and algorithms for diagnosis and treatment were developed. The recommendations focus on identification of diseases and comorbidities, strategies to recognize triggering factors, improvement of treatment by individualized care.