Orphanet journal of rare diseases · 2026
Narratives unveil knowledge and awareness-related issue, reinforcing patients' self-identity in sickle cell disease.
Письмо в редакциюНазвание и аннотация: Перевод пока не подготовлен
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Franceschi Lucia De, Galvani Carla, Ruffo Giovan Battista, Colombatti Raffaella, Graziadei Giovanna, Palazzi Giovanni, Venturelli Donatella, Pinto Valeria Maria, Quota Alessandra, Scopinaro Annalisa, Vindigni Raffaele, Chesi Paola, Forni Gian Luca, Gigante Antonia, Cappuccio Antonietta, Fiorencis Alessandra, Begali Francesca, Ceolan Jacopo, Vitale Silvia, Villaboni Simone, Marini Maria Giulia
Аннотация
BACKGROUND: Sickle cell disease (SCD) increasingly requires a holistic approach. Narratives have been used to complement clinical and observational findings related to quality of life (QoL). The "Sickle Cell Anemia Narrations" project aimed to help frame the illness burden and QoL of the multi-ethnic population with SCD in Italy via a narrative approach.
RESULTS: Twenty-one adult patients with SCD and 10 informal caregivers from seven SCD centers and two Patient Associations volunteered for this project. Researchers collected anonymous narratives and independently analyzed them through content analysis. Lack of SCD knowledge on multiple levels was found to strongly impact the illness experience independent of ethnicity. Fear of stigma at school, the challenging management of vaso-occlusive crises, and a lack of SCD knowledge at the workplace were reported. Fifty-five percent of participants reported a lack of SCD knowledge among healthcare professionals working outside the expert centers and 33% reported misdiagnosis. Caregivers highlighted the lack of coordination among territorial healthcare facilities.
CONCLUSIONS: Our findings confirm that SCD represents a critical burden for patients and caregivers and indicate that lack of SCD knowledge may bolster the barriers to care, thus revealing the urgent need to enhance awareness to foster inclusion and quality of care.
RESULTS: Twenty-one adult patients with SCD and 10 informal caregivers from seven SCD centers and two Patient Associations volunteered for this project. Researchers collected anonymous narratives and independently analyzed them through content analysis. Lack of SCD knowledge on multiple levels was found to strongly impact the illness experience independent of ethnicity. Fear of stigma at school, the challenging management of vaso-occlusive crises, and a lack of SCD knowledge at the workplace were reported. Fifty-five percent of participants reported a lack of SCD knowledge among healthcare professionals working outside the expert centers and 33% reported misdiagnosis. Caregivers highlighted the lack of coordination among territorial healthcare facilities.
CONCLUSIONS: Our findings confirm that SCD represents a critical burden for patients and caregivers and indicate that lack of SCD knowledge may bolster the barriers to care, thus revealing the urgent need to enhance awareness to foster inclusion and quality of care.