Abstract
BackgroundLiving with an ostomy can be challenging and adapting to life with an ostomy can be particularly complex, with regard to both the physical and psychosocial aspects. Follow-up with a stoma care nurse (SCN) is usually performed after surgery to support the adaptation process. In the present paper, we describe a new model of ostomy care, where a clinical feedback system (CFS) is implemented in order to improve the adaption process of patients with an ostomy. We also present a plan for evaluating patients experience with the CFS and their clinical outcomes.MethodsIn this study, we include patients who had recently performed colostomy, ileostomy, or urostomy surgery. The intervention includes self-reported measures for adaptation to life with an ostomy and health-related quality of life (HRQoL), as well as patient experiences and satisfaction recorded by the clinical feedback system. The measures are electronically assessed before each clinical consultation at 3, 6, and 12 months after surgery. The scores are instantly analysed and graphically presented for use during the consultation and the patient and the SCN can discuss the findings. Patient experiences and satisfaction with care will be measured with the Generic Short Patient Experiences Questionnaire. Adaptation to the life with ostomy will be measured with the Ostomy Adjustment Scale, and HRQoL with the Short Form 36.DiscussionThis study presents a novel approach that could lead to improved consultation, more patient involvement, and better adaptation to life with an ostomy.Trial registerClinicalTrials.gov Registration Number: NCT03841071.Date 18. February 2019 retrospectively registered.
Highlights
Living with an ostomy can be challenging and adapting to life with an ostomy can be complex, with regard to both the physical and psychosocial aspects
The importance of follow-up with a stoma care nurse (SCN) has been widely discussed, and novel approaches to tailor care more closely to the needs of these patients, those struggling with ostomy-related adaptation and with a reduced health-related quality of life (HRQoL) could be useful
We describe a new model of patient reported outcomes (PRO) and clinical feedback system (CFS) in ostomy care and a plan for evaluation
Summary
On the day of the 3-month follow-up session, the participants can answer the questionnaires via a computer/Ipad at home before they arrive for the consultation or they can sit in a designated area in the waiting room for approximately 20 min prior to the consultation During these 20 min, the patient can log onto the data system using his/her electronic identification to answer the questionnaires about sociodemographic data and clinical data, and complete the OAS and Short Form 36 (SF-36) questionnaires. The Norwegian version of the OAS, originally developed by Olbrisch in 1983, will be used as measure of the primary outcome [2] This 34-item scale developed by a psychiatrist, ostomy care nurses, patients, and students records a patient’s subjective adaptation to the physical, psychological, and social changes that occur after ostomy surgery. The user panel will help interpreting findings in order to better disseminate aspects that are important from the patient’s point of view
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