The Dedicated Inflammatory Bowel Disease Nurse, If You Know Them, You Love Them: Survey of the Italian IBD Patients' Association

Napolitano, Daniele;Scaldaferri, Franco;Leone, Salvo;Previtali, Enrica;Fiorino, Gionata;Caprioli, Flavio;Fantini, Massimo Claudio;Radice, Simona;Lorenzon, Greta;Schiavoni, Elisa

2025-01-01

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Abstract

Introduction Inflammatory bowel diseases (IBDs) are chronic conditions that negatively influence the quality of life of affected patients. IBD nurses are an essential part of the multidisciplinary team managing patients with IBD. Given the lack of studies evaluating the role of IBD nurses, this study aimed to assess the patient's perspective regarding the role and competencies of the IBD nurse. Methods A cross-sectional study was conducted between October and November 2024, using an online survey. The main inclusion criteria were being over 18 years old and having an established diagnosis of IBD. Subjects who fulfilled these criteria were invited to participate via email from the Italian IBD organization AMICI ITALIA. The questionnaire used for the survey, developed ad-hoc according to N-ECCO guidelines, was structured into 3 thematic sections: demographic and clinical information, patient-nurse interaction, and nursing competencies. Results Most patients (69.7%) reported excellent relationships with their IBD nurse, emphasizing the importance of trust in disease management. Those who could identify their dedicated IBD nurse expressed higher satisfaction regarding empathy, communication, and the nurse's influence on their treatment journey compared to those who could not identify their nurse, illustrating the positive impact the nurse had on their care. Similarly, patients who recognized their nurse demonstrated greater confidence in the nurse's competence. Conclusion This study emphasized the crucial role of the IBD nurse in the care journey of IBD patients. Although most patients reported an excellent relationship with their IBD nurse, many still struggle to identify their nurse. Larger studies are needed to confirm these findings further.