Experiences and results from using a novel clinical feedback system in routine stoma care nurse follow-up of patients with an ostomy: a longitudinal study

Abstract

Plain English summary Studies show that patients struggle with adjustment to the ostomy in a broad spectre of physical and psychosocial factors, and stoma care nurse follow-up is necessary. Mapping each patient`s most important challenges during a short outpatient follow-up consultation may be difficult. Thus, missing information on individual factors affecting adjustment and quality of life can result in underreported problems and unclear communication between patients and stoma care nurse. The study aimed to explore patient satisfaction and experiences using digital questionnaires before each consultation in stoma care nurse ostomy follow-up and to study adjustment to ostomy and health-related quality of life in routine follow-up 3,6 and 12 months after ostomy surgery. The study results showed that the patients were satisfied with their follow-up using questionnaires before consultations (96%). Especially, they felt they received sufficient and individualised information, were involved in treatment decisions, and benefited from the consultations. Especially the life areas “daily activities”, having “knowledge and skills”, “health”, and the patient`s health-related quality of life improved during the first year after the operation. Thus, patient reported outcomes/clinical feedbacksystem is a promising method for follow-up of ostomy patients because it may promote better discussions during the consultation and tailor the patient’s adjustment trajectory more precisely than without such a system.

Keywords

• Ostomy
• Patient-reported outcomes
• Clinical feedback system
• Stoma care nurse
• Outpatient follow-up
• Ostomy adjustment