A new model of patient-reported outcome monitoring with a clinical feedback system in ostomy care: rationale, description and evaluation protocol

Abstract

Background: Living 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. Methods: In 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 healthrelated 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. Discussion: This study presents a novel approach that could lead to improved consultation, more patient involvement, and better adaptation to life with an ostomy. Trial register: ClinicalTrials.gov Registration Number: NCT03841071. Date 18. February 2019 retrospectively registered.

Psychometric Properties of New Subscales of the Ostomy Adjustment Scale: A Cross-Sectional Study

“…The original OAS thus yields a sum score varying from 34 to 204 along with scores from each of the 34 component items. 16 The reliability of the OAS, as measured by Cronbach's alpha, has been reported to be 0.87, 16 0.89, 19 and 0.93 18 in previous studies, and its test-retest correlation coefficients have been reported to be 0.72 16 and 0.69. 18 Within our CFS, the OAS sum score and single-item scores are currently used as an aid to the patient and SCN in identifying what is most important for them to discuss during their consultation, as the computer displays the patient's answers sorted from lowest adjustment to best adjustment.…”

“…This cross-sectional study investigating further development of the OAS is based on the Norwegian version of the instrument. 18,25 The study sample included a merged sample of a total of 302 participants, who came from two studies. The first group (158 participants) was recruited from pharmacies in 2010-2011, 18 and the second group included 144 patients who participated in routine electronic follow-up in the outpatient ostomy clinic at the department of surgery of Førde Central Hospital from April 2018 to January 2020.…”

“…18,25 The study sample included a merged sample of a total of 302 participants, who came from two studies. The first group (158 participants) was recruited from pharmacies in 2010-2011, 18 and the second group included 144 patients who participated in routine electronic follow-up in the outpatient ostomy clinic at the department of surgery of Førde Central Hospital from April 2018 to January 2020. 21 Data from the 158 participants recruited in 2010-2011 were plotted by the first author (KLI), and the dataset from 2018 to 2020 was automatically saved in an electronic database when the patient answered the OAS electronically.…”

“…Previous, the research team has translated OAS into Norwegian and validated the overall summary score in a Norwegian population. 18 First, each of the four SCNs suggested subscales of the OAS in consideration of the manner and order in which it would be natural to talk about items during a consultation. Second, each SCN`s suggestions were sent to all SCNs for new consideration.…”

“…[1][2][3][4][5][6][7][8][9] Studies of several pre-and postoperative follow-up programs and education in ostomy care performed by stoma care nurses (SCNs) have shown that such follow-up and education promote the patient's self-care and adjustment process to life with an ostomy. 4,[9][10][11] Questionnaires such as The Ostomy Adjustment Inventory 23, 12 the Stoma Selfefficacy scale [13][14][15] and the Ostomy Adjustment Scale (OAS) [16][17][18][19][20] has been validated in several countries and used to measure psychosocial adjustment to ostomy.…”