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

Plain English summaryStudies 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. BackgroundA faecal or urinary ostomy may be lifesaving. However, it involves significant bodily change, and the adjustment process to life with an ostomy includes a broad spectre of physical and psychosocial challenges. Thus, new interventions are needed to improve adaptation to living with an ostomy. This study aimed to examine experiences and outcomes using a new clinical feedback system with patient-reported outcome measures in ostomy care.MethodsIn this longitudinal explorative study, 69 ostomy patients were followed by a stoma care nurse in an outpatient clinic, using a clinical feedback system postoperatively at 3, 6 and 12 months. The patients responded electronically to the questionnaires before each consultation. The Generic Short Patient Experiences Questionnaire was used to measure patient experiences and satisfaction with follow-up. The Ostomy Adjustment Scale (OAS) measured adjustment to life with an ostomy, and the Short Form-36 (SF-36) assessed the patient's health-related quality of life. Longitudinal regression models with time as an explanatory (categorical) variable were used to analyse changes. The STROBE guideline was applied.ResultsThe patients were satisfied with their follow-up (96%). Especially, they felt they received sufficient and individualised information, were involved in treatment decisions, and benefited from the consultations. The OAS subscale scores for 'daily activities', 'knowledge and skills' and 'health' improved over time (all p < 0.05), as did the physical and mental component summary scores of the SF-36 (all p < 0.05). Effect sizes of changes were small (0.20-0.40). Sexuality was the most challenging factor reported.ConclusionsThe clinical feedback system could be helpful because outpatient follow-ups for ostomy patients may be more tailored when clinicians use clinical feedback systems. However, further development and testing are needed.