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Development of Compendium for Esophageal Squamous Cell Carcinoma
Published on: April 12, 2024
Urgent, but Not Certain: A Systematic Environmental Scan and Content Analysis of Publicly Available Patient
Waseem Jerjes1, Marcin Klingbajl2, Sarah Williams3
1School of Public Health, Faculty of Medicine, Imperial College London, London, UK. waseem.jerjes@nhs.net.
Background:
Patient information is a component of care following an urgent suspected cancer referral, but its ability to explain diagnostic uncertainty and support safe action while patients await investigation has not been systematically examined. We evaluated publicly retrievable referral resources used in England.
Methods:
We conducted a systematic environmental scan and directed content analysis of materials hosted or adopted by England's 20 NHS Cancer Alliances and NHS services. Standard, Easy Read, visual, and audiovisual variants were assessed using an 18-item Referral Uncertainty Communication Framework. Criteria were scored absent, incomplete, or explicit and actionable. PEMAT, readability, format comparisons, and prespecified sensitivity analyses were secondary.
Results:
Thirty-eight resource variants were included. Thirty-three (86.8%) explicitly separated referral from cancer diagnosis, whereas 28 (73.7%) distinguished urgency from cancer likelihood. Only one (2.6%) preserved the patient's referral trigger. Six (15.8%) gave a timeframe qualified for individual variation; 11 (28.9%) advised action if symptoms worsened or changed while investigation was pending; and 10 (26.3%) addressed persistent symptoms after reassuring tests or a no-cancer outcome. Ownership was the strongest domain and safety-netting the weakest. Mean scores were 29.1/36 for standard or interactive resources, 22.3/36 for Easy Read resources, and 15.5/36 for visual aids. Findings were consistent in complete-source sensitivity analyses.
Conclusions:
Publicly retrievable information explains pathway entry, but less consistently supports clinical safety during unresolved uncertainty. These omissions may leave patients without guidance when plans no longer fit. Referral materials should retain the presenting concern, separate urgency from probability, qualify timing, identify responsibility, and provide explicit symptom-contingent return advice.
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