User experience and reported challenges with stoma care products: an online survey of people with a stoma

Abstract

Abstract Background Quality of life (QoL) in people living with a stoma has been assessed by several patient-reported experience measures, but few studies have examined the quality of user experience (UX) associated with stoma care and management products specifically. This exploratory study aimed to characterise the lived experience and self-reported unmet needs of people with a stoma in relation to stoma care and management products. Methods A two-stage, cross-sectional online survey was conducted. In Stage 1, an initial questionnaire drafted by healthcare professionals was reviewed in a patient focus group ( n = 7), who assessed content relevance and clarity and suggested additional items; this stage refined content but did not constitute formal psychometric validation. In Stage 2, the resulting 20-item, non-validated Stoma Care and Management Questionnaire (SCMQ) was distributed via an open, non-unique link through Bowel Research UK and stoma-related social media groups. Data were analysed descriptively, with exploratory subgroup comparisons, using SPSS (v29.0.01); free-text responses underwent inductive, frequency-based qualitative content analysis informed by Braun and Clarke’s approach to identifying categories. Results Stage 1 produced a four-domain draft questionnaire (Demographics; Stoma Care and Management; Dietary Requirements; Design Features). In Stage 2, 406 of 790 screened respondents (51%) met the inclusion criteria and completed the survey. Participants reported leakage, pain or bleeding during cleaning, and bag detachment (particularly during sleep) as recurrent challenges. Travel-related difficulties included limited access to stoma-adapted public toilets, managing supplies, and limited awareness among airport staff. The most frequently rated “very important” product features were leak-free (89%), smell-free (82%), and accident-free nights (80%) performance; 86% rated “good quality of life” as a very important product expectation. Exploratory subgroup analysis found that bag detachment was significantly more frequent among participants with an ileostomy than a colostomy ( p = 0.050). Conclusions People with a stoma report persistent challenges with currently available stoma care products. The SCMQ, an exploratory and as-yet non-validated instrument, identifies leakage, bag detachment, and travel-related barriers as priority areas for improvement. These findings are hypothesis-generating rather than generalisable, and are intended to inform clinical care pathways, patient education, and future user-centred device development.