A holistic view of the stoma care pathway in Italy: a nationwide learning survey

Abstract

Background: The therapeutic care pathway for a patient with a stoma starts with a preoperative diagnosis and the decision to form an ostomy, followed by postoperative education, and it continues for as long as the stoma is in place. Clinical studies in this area are often limited to analysing a specific stage in this process, and less attention has been given to how each stage influences the rest of the pathway. Aim: This study aimed to provide a holistic assessment of the entire stoma care pathway, encompassing professional management of emerging complications, as well as the patient's perceptions of care and capacity for self-management, to determine how one management stage might affect another. Method: The study consisted of an anonymous questionnaire with 96 items divided into nine sections. It enrolled people with one or more urinary and/or intestinal stoma/s and lasted from September 2017 to December 2019. Findings: In the sample of 403 ostomates, 52% were female and 48% male, while 74% had an intestinal stoma, 19% a urinary stoma and 7% both. Of all respondents, 52% presented with peristomal lesions. Pre-operatively, a lack of training (76%), stoma siting (70%) and psychological support (92%) were observed. After discharge, 75% had peristomal lesions, 47% had professional care. At the time of the study, 60% were self-sufficient in ostomy care, 52% had lesions, while 38% were unsatisfied with the device used. Conclusion: Detailed discussion is given to peristomal skin care, self-sufficiency, ongoing support and the needs of people with both a urinary and an intestinal stoma. Patient education, psychological support and access to a stoma care specialist all likely affect acceptance and quality of life.