Living with Chronic Spontaneous Urticaria in Italy: A Narrative Medicine Project to Improve the Pathway of Patient Care

Cappuccio, Antonietta; Limonta, Tommaso; Parodi, Aurora; Cristaudo, Antonio; Bugliaro, Filomena; Cannavò, Serafinella Patrizia; Riggio, Oliviero; Gurioli, Carlotta; Vignoli, Alice; Parente, Roberta; Iemoli, Enrico; Caldarola, Giacomo; Pità, Ornella De; Nuzzo, Sergio Di; Cancian, Mauro; Potenza, Concetta; Caminati, Marco; Stingeni, Luca; Saraceno, Rosita; Trevisini, Sara; Piccirillo, Angelo; Sciarrone, Claudio; Panebianco, Rosanna; Gola, Massimo; Costanzo, Antonio; Grieco, Teresa; Massaroni, Katia; Reale, Luigi; Marini, Maria Giulia

doi:10.2340/00015555-2478

Cited by 27 publications

(29 citation statements)

References 16 publications

(18 reference statements)

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“…Similarly, as only a small number of physicians were surveyed, we cannot be certain that their responses reflect the approaches and perspectives of the wider medical community. Nevertheless, our findings regarding US patients with CSU correspond with those of a European study that assessed the perspectives of patients and healthcare professionals on CSU using a narrative medicine methodology (11). Similar to our study, the Italian study found patients experienced a range of negative emotions, with frustration common in the period leading to diagnosis and a high proportion of patients reporting impairment to QoL (11).…”

Section: Discussionsupporting

confidence: 87%

“…Patients also experience a substantial psychological burden; many develop anxiety and depression after diagnosis, which significantly impacts their QoL (6,7,9,10). Patients also report dissatisfaction with their treatment and their relationship with their physician (5,8,11). Highlighting the value of the physician acknowledging the emotional element of CSU, one study found that patients whose physician had discussed the emotional impact of the disease with them were significantly more satisfied with their treatment and also more trusting of their physician (8).…”

Section: Significancementioning

confidence: 99%

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Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US

Goldstein¹,

Eftekhari²,

Mitchell³

et al. 2019

Acta Derm Venerol

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Section: Discussionsupporting

confidence: 87%

Section: Significancementioning

confidence: 99%

Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US

Goldstein¹,

Eftekhari²,

Mitchell³

et al. 2019

Acta Derm Venerol

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“…Impairment of QoL due to CU was reportedly worse than or similar to that observed with other skin diseases, including psoriasis, acne, or atopic dermatitis (13)(14)(15). The impact of CU on QoL has recently been highlighted in an Italian narrative medicine project (16). Based on data from 2004 to 2006, the mean yearly direct and indirect costs of CSU in the US were estimated to be $244 million (17).…”

Section: Disease Overviewmentioning

confidence: 84%

A Review of International Recommendations for the Diagnosis and Management of Chronic Urticaria

Beck¹,

Bernstein²,

Maurer³

2017

Acta Derm Venerol

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Both spontaneous and inducible forms of chronic urticaria pose a significant economic burden and have an adverse effect on patients' quality of life. The international guidelines and US practice parameters for the diagnosis and management of chronic urticaria both recommend performing a thorough patient history and physical examination, conducting limited routine laboratory testing, and taking a stepwise approach to treatment. These documents differ in several areas, such as the order of diagnostic procedures and the treatment for patients non-responsive to standard dose H1-antihistamines. Patients with chronic urticaria who visit a specialist have typically been treated with second-generation H1-antihistamines - the recommended first-line treatments. The advantages and disadvantages of each treatment option should be taken into consideration when selecting therapies beyond H1-antihistamines. Greater awareness of the international guidelines and US practice parameters will likely improve the quality of care for patients with chronic urticaria.

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“…The main tools of this methodology are parallel charts and illness plots, dedicated to healthcare professionals and patients-caregivers, respectively [14,15]. Recent studies have demonstrated advantages of applying the parallel chart in exploring a healthcare professional's point of view about the pathway of care for chronic conditions (i.e., chronic obstructive pulmonary disease [COPD]) and doctor-patient relationships [16,17]. Similarly, patient and caregiver illness plots were recently shown to be a source of information on personal coping with the disease, and on how patients and their families rearrange their lives after a diagnosis in studies in other chronic diseases [18][19][20].…”

Section: Introductionmentioning

confidence: 99%

The Burden of Heart Failure: Physicians’, Patients’, and Caregivers’ Perspectives Using Narrative Medicine

Testa

Cappuccio²,

Latella

et al. 2020

Preprint

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Background The TRUST (The Roadmap Using Story Telling) project used a Narrative Medicine (NM) framework to assess the impressions of people with heart failure (HF), their informal caregivers and HF specialists of the impact of heart failure (HF) on the daily life of patients and their carers. Methods Italian HF specialists participated on a voluntary basis, completing their own narratives, and inviting patients and their caregivers to write anonymously about their experiences, all on a dedicated online platform. The narratives were analyzed according to standard NM methodology. Results 82 narratives were collected from patients, 61 from caregivers, and 104 from HF specialists. Analysis of the three points of view revealed the extent of the burden of illness on the entire family, particularly that of the caregiver. The impact was mainly experienced as emotional and social limitations in patients’ and their caregivers’ daily lives. The analysis of all three points of view highlighted a strong difference between how HF is perceived by patients, caregivers, and HF specialists. Conclusions This NM project illustrates the complex issues of living with HF and gave new insight into integrating three different perspectives into the HF pathway of care.

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Living with Chronic Spontaneous Urticaria in Italy: A Narrative Medicine Project to Improve the Pathway of Patient Care

Cited by 27 publications

References 16 publications

Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US

Perspectives on Living with Chronic Spontaneous Urticaria: From Onset through Diagnosis and Disease Management in the US

A Review of International Recommendations for the Diagnosis and Management of Chronic Urticaria

The Burden of Heart Failure: Physicians’, Patients’, and Caregivers’ Perspectives Using Narrative Medicine

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