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.

BACKGROUND: A 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. METHODS: In 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. RESULTS: The 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. CONCLUSIONS: The 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.

Factors associated with leakage in patients with an ostomy: A cross-sectional study.

AIMS: To explore the associations between sociodemographic and clinical data, the patient's knowledge and skills, and relationship to healthcare professionals with leakage from an ostomy. DESIGN: Cross-sectional. METHODS: This study included 160 patients with a colostomy, ileostomy, or urostomy. Leakage was the dependent variable and was assessed by self-report. Sociodemographic and clinical data and the Ostomy Adjustment Scale subscores, 'knowledge and skills' and 'health care professionals' were independent variables. Spearman's rho and multivariate partial least squares regression analysis were used to estimate possible factors associated with leakage. RESULTS: Of the participants, 13.8% had leakage weekly or more often, 16.3% more often than once a month and 37, 5% had leakage more seldom than once a month. The most important risk factors for leakage were (1) having an ostomy placement that does not meet international guidelines, (2) not having an optimal relationship with health professionals, (3) having a diagnosis other than cancer, (4) not having proper knowledge and skills in ostomy care, (5) not having a colostomy, (6) having a convex baseplate, (7) having an oval ostomy, and (8) being dependent on others for ostomy care. The independent variables in the PLS- model explained 31% of the variance in leakage. PATIENT OR PUBLIC CONTRIBUTION: We thank the patients in the user panel for their help during the study.

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

BACKGROUND: The Ostomy Adjustment Scale (OAS), which consists of an overall sum score along with 34 single-item scores, has been frequently used to measure self-reported adjustment to life with an ostomy. However, it is unknown whether the OAS can be divided into meaningful thematic subscales that may make it easier to administer and to apply in a clinical feedback system. PURPOSE: The purpose of this study was to specify thematic OAS subscales and evaluate their psychometric properties. PATIENTS AND METHODS: A cross-sectional study was conducted with 302 patients across Norway having colostomy, ileostomy, or urostomy. The OAS items were divided into different subscales by expert nurses and patients based on clinical and theoretical considerations. The overall structural validity of this analysis of the OAS was examined using robust confirmatory factor analysis. We evaluated the overall goodness of fit using the root mean square error of approximation (RMSEA), the comparative fit index (CFI) and the Tucker-Lewis index (TLI). Factor loadings from the confirmatory factor analysis were used to calculate composite reliability values for the new OAS scales. RESULTS: The OAS was divided into seven subscales. The overall structure validity was acceptable with RMSEA = 0.053 (90% CI, 0.045-0.060), CFI = 0.913 and TLI = 0.904. The composite reliability values of all scales were >0.70. CONCLUSIONS: The OAS can be divided into seven clinically meaningful subscales with acceptable psychometric properties. TRIAL REGISTER: ClinicalTrials.gov Registration Number: NCT03841071. Date 18. February 2019 retrospectively registered.

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

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 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. 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.

Long-Term Followup of Patients with Active J-Reservoirs after Restorative Proctocolectomy for Ulcerative Colitis with regard to Reservoir Function, Mucosal Changes, and Quality of Life.

Objective. Study the functional results and mucosal changes in the ileal pouch after restorative proctocolectomy with J-reservoir for ulcerative colitis. Material and Methods. Followup study of 125 patients with J-reservoir with one disease-specific- and one general (SF-36) quality of life-questionnaire, rectoscopy with biopsies, and stool samples to evaluate inflammation, dysplasia, presence of Helicobacter pylori and calprotectin level. Results. Fourteen J-reservoirs were removed or deactivated, leaving 111 patients for followup. The followup time was 6.8 (1-15) years. 87.4% of the patients were satisfied. 93.1% had some kind of functional restriction: food- (75.5%), social- (28.9%), physical- (37%) or sexual restriction (15.3%). 18.6% had often or sometimes faecal incontinence. Low daytime faecal frequency was associated with good quality of life. 13 patients (12.6%) had a less favourable result. There was no pouch-dysplasia. Calprotectin levels were increased in patients with visible pouch inflammation or history of pouchitis. HP was diagnosed by RUT in 42.3%, but was not associated with inflammation or pouchitis. Conclusions. Most patients were satisfied with the J-reservoir in spite of a high frequency of various restrictions. 12.6% (13 patients) had a less favourable functional result, partly due to a high frequency of defecations, pain, pouchitis and inflammation.

Long-term followup with evaluation of the surgical and functional results of the ileal pouch reservoir in restorative proctocolectomy for ulcerative colitis.

Aims. Evaluate the early and long term surgical and functional results of the ileal pouch-reservoir (IPAA) in patients with intractable ulcerative colitis. Material and Methods. Followup of 134 consecutive patients with W-or J-ileal pouch by diseases-specific and general health (SF-36) questionnaire. In the first 44 patients, early and late followup was performed. Results. Followup was performed 7.4 years (0.5-17 years) after construction of W (n = 9) and J (n = 125) ileal pouch, which had similar results. There were 14.9% early and 43.6% late complications with 12.7% early and 19.5% late reoperations. Protecting loop-ileostomy used in 54 patients (43.9%), did not protect against complications. Thirteen reservoirs (9.8%) were resected (n = 8) or deactivated (n = 5) due to functional failure. Operation time, postoperative complications and pouchitis were determinators for reservoir failure and reduced quality of life. The functional results at followup of 44 patients at 2.5 years (0.8-6.7 years) and 11.5 years (8.2-19.2 years) were remarkably similar. Conclusions. IPAA is a good option for most patients when medication fails. 10% experience failure with inferior quality of life. Protective stoma will not reduce failure rates. After an initial time period, reservoir function will not change over time.