EPD513 - Improving Health Communication and Psychosocial Outcomes in Ostomy Care: Development and Pilot Testing of the Speaking Stoma Guide

Purpose/Background: Permanent digestive ostomies, created for conditions such as inflammatory bowel disease, cancer, and trauma, allow patients to live long and healthy lives. However, 40-50% of ostomates experience depression and anxiety associated with stigma, social isolation, and negative social interactions. While existing educational resources focus on pouching and wound care, none address communication strategies for managing socially challenging situations. The objective of this study was to evaluate the clarity, relevance, and usability of the Speaking Stoma Guide, the first health communication tool for ostomates, co-produced with patients, clinicians, communication experts, and the United Ostomy Associations of America (UOAA), and available in both English and Spanish.

Methods/Interventions: We conducted a non-randomized end-user evaluation of the Guide at our ostomy clinic, Texas Ostomy Services and with the UOAA Board of Directors. The Guide covers 11 salient topics such as intimacy, socializing, travel, and managing leaks or noises. This group included 31 participants, both English and Spanish-speaking, who completed the Stoma quality of life (QoL) measure in their preferred language. The Stoma-QoL measure consists of 20 questions answered in a 4 point scale with a minimum score of 20 and a maximum score of 80. A higher score is indicative of improved ostomy health related QoL. We elicited feedback on the Guide for topic-relevance, content clarity, and preliminary usability.

Results/Outcomes: The results (n=31) show that the median QoL score for our sample is 53 (IQR: 43-63). This is consistent with other reported populations and digestive disease-specific analyses. Figure 1 shows the median scores for each question with areas of greatest concern shown in red and yellow. Specifically, these data show issues with noises, leaks, embarrassment, intimacy, and fatigue, which represents the areas for which the Speaking Stoma Guide has the potential for positive impact.

Conclusion/Discussion: This study addresses critical disparities in ostomy care by testing a bilingual, patient-centered communication resource in diverse populations, including underserved and spanish-speaking communities. Results will inform the design of a larger randomized controlled trial, randomized to usual care or usual care plus the Speaking Stoma Guide and will provide feasibility and acceptability estimates, adherence patterns, and preliminary behavioral efficacy. This data has and will continue to contribute to improving communication, reducing stigma, and enhancing psychosocial and quality-of-life outcomes for ostomates.

Figure 1 - Quantitative Assessment of Ostomate HRQoL during Alpha Testing (Median Scores, n=31)