Abstract

The purpose of this study was to determine predictors of health-related quality of life (HRQOL) in persons aged 18 to 40years living with inflammatory bowel disease (IBD) and a fecal ostomy. Descriptive cross-sectional study. The sample comprised 98 participants recruited from online discussion boards/support groups for individuals living with IBD and an intestinal ostomy. More than three-quarters (76.5%) were female; 45.9% (n=44) had lived with an ostomy for 2years or less. Data were collected through an online survey made available from October 2018 to December 2018. HRQOL was measured using the Healthy Days Core Module (Centers for Disease Control and Prevention HRQOL-4). Item 1 from the CDC HRQOL-4 represented the variable self-rated health (SRH). The subscales of bodily pain, general mental health, and vitality from the Short-Form 36 Health Survey and the subscales of ostomy function and body image/sexuality plus skin irritation item from the Young-Fadok Stoma Quality of Life (QOL) Scale were used to measure predictors of pain, psychological distress, fatigue, peristomal skin irritation, leakage of ostomy appliance, and body image/sexual disturbance. Correlational and hierarchical multiple linear regression analyses were conducted to complete hypotheses testing. Significant correlations were found between pain, fatigue, peristomal skin problems, psychological distress, SRH, and HRQOL. Pain, fatigue, psychological distress, and self-related health explained 53.2% of the variance in HRQOL based on hierarchical multiple linear regression and controlling for demographic variables such as marital and employment status. Findings suggest global disease symptoms of IBD in the form of pain, fatigue, and psychological distress and individual perception of health (SRH) are more important than transient ostomy symptoms of peristomal skin complications and leakage of ostomy appliance in predicting HRQOL. Individuals in this population regularly use online resources indicating a need to understand and gain insight into the information posted online in the management of the fecal ostomy and IBD.

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