EP816 - Ostomy perceptions and an opportunity for outreach improvement

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Purpose/Background: To undergo ostomy creation is to undergo a profound adjustment in a patient’s lifestyle that can impact confidence and very sense of identity. The appearance of an ostomy and associated appliance can be off-putting to the patient themselves, and patients may be self-conscious in public or even among close friends and family. Although there are a variety of products aimed at making ostomies more discreet, the appliance itself is primarily offered in a single beige shade. Adhesive bandages like Band-Aid are now offered in a variety of shades to better approximate diverse skin tones, and we sought to investigate whether doing the same for ostomy appliances would change the perception of those with ostomies, particularly for people of color.

Methods/Interventions: Participants for this study were contacted via ResearchMatch as well as national and regional ostomy support group websites and Facebook pages, and an anonymous online survey was distributed via email. Perceptions of the participants’ ostomies and opinions regarding ostomy shade were measured with Likert-scale and free-text responses. Responses were interpreted with descriptive statistics and free-text response recurring themes were evaluated using inductive coding.

Results/Outcomes: 297 participants completed the survey. Respondents were predominantly female (167, 56.6%) and >60 years old (181, 60.9%). 279 (93.9%) participants were White. 256 (89.2%) of participants had a permanent ostomy and 84% had an ostomy for over a year. 78% of participants were somewhat or extremely satisfied with their current appliance, 16% were somewhat or extremely unsatisfied. 75% of participants felt neutral, somewhat, or extremely comfortable showing their ostomy around close friend or family. However, only 35% felt neutral, somewhat, or extremely comfortable showing their ostomy in public. 50% of participants felt that an ostomy prevented them from doing activities they enjoyed.

55% of participants responded ‘No’ when asked if they would prefer an ostomy that more closely approximated their skin tone. Among respondents who identified as people of color, 60% responded ‘No.’ Themes identified when asked why included indifference to color and that the ostomy was always hidden from view by clothing. Interestingly, when asked how comfortable participants would be showing their ostomy in public if they had an appliance that matched their skin tone, the percent of those who felt neutral, somewhat, or extremely comfortable rose from 35% to 46%. Those who felt extremely uncomfortable fell from 43% to 35%.

64% of participants reported actively attending an ostomy support group. Of those who attend a support group, only 8% identified as non-White.

Conclusion/Discussion: We found that most respondents were uncomfortable showing their ostomy in public but were satisfied with their ostomy appliance and would not be interested in an appliance that more closely approximated their skin tone. However, the proportion of respondents who would feel at least neutral about showing their ostomy in public did increase if the appliance matched their skin tone.

One unexpected but notable finding was the underrepresentation of non-White respondents in our survey cohort. This is a limitation to our study, which was aimed at assessing response to diverse options in ostomy appliances. Although this underrepresentation renders our study somewhat incomplete, it identifies an important opportunity to investigate access and utilization of ostomy support resources among people of color and improve outreach to this population.