Stoma – Quality of Life (QOL) pathway

This is a two-stage pathway that streamlines the delivery, reminders, scoring, analysis, and data export of the Stoma Quality of Life PROM for clinicians and researchers.

This pathway is designed to enable clinicians and researchers to

• deliver the Stoma-QoL PROM tool to their patients quickly and easily,
• provide patients with contextual information about the tool,
• automatically remind patients to submit the Stoma-QoL PROM,
• collect the results of the submitted Stoma-QoL PROM,
• calculate the Stoma-QoL PROM Score based on the answers submitted,
• allocate Stoma-QoL PROM Cut Points based on the score calculations,
• display survey results, Score and Cut Points, and
• provide an export of deidentified Stoma-QoL PROM data for research purposes.

Adults with colostomy or ileostomy (temporary or permanent)

The Stoma-QoL questionnaire is a validated patient-reported outcome measure designed to assess health-related quality of life in individuals with colostomies or ileostomies. Here’s how it is administered and scored

20-item stoma-specific questionnaire assessing QoL across four domains: sleep, intimacy, family/social relations, and body image. Uses a 4-point Likert scale (“Always” to “Not at all”).

Type of PROM – e.g. evaluative

• Stoma-specific and validated across cultures
• High reliability (Cronbach’s α = 0.90)
• Short completion time (5–10 minutes)

• No validation for urostomy patients
• Potential item redundancy (3 misfitting items identified in Rasch analysis)
• Limited responsiveness assessment

Validated in European populations (Italy, France, Germany, Denmark) 536 and used in clinical research to assess stoma-related QoL

• Internal consistency: Cronbach’s α = 0.90
• Test-retest reliability: Spearman’s correlation >0.88

Adults (mean age 62 years) with non-temporary stomas; 70% had intestinal cancer, 13% inflammatory disease

Total score: Sum of 20 items (range 20–80). Converted to 0–100 scale (higher = better QoL)

Not explicitly defined in validation studies.

• Prieto L, Thorsen H, Juul K. Development and validation of a quality of life questionnaire for patients with colostomy or ileostomy. Health Qual Life Outcomes. 2005 Oct 12;3:62. doi: 10.1186/1477-7525-3-62. PMID: 16219109; PMCID: PMC1274339.
• Canova C, Giorato E, Roveron G, Turrini P, Zanotti R. Validation of a stoma-specific quality of life questionnaire in a sample of patients with colostomy or ileostomy. Colorectal Dis. 2013 Nov;15(11):e692-8. doi: 10.1111/codi.12324. PMID: 23800245.
• Skibsted CV, Jensen BT, Juul T, Kristensen HØ. Patient reported outcome measures assessing quality of life in patients with an intestinal stoma: A systematic review. Colorectal Dis. 2022 Oct;24(10):1128-1139. doi: 10.1111/codi.16202. Epub 2022 Jun 16. PMID: 35639396; PMCID: PMC9796962.