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E-Patient Counseling Trial (E-PACO): Computer Based Education versus Nurse Counseling for Patients to Prepare for Colonoscopy
Published on: August 1, 2019
Patient experiences and decision-making priorities in early esophageal cancer: a qualitative interview study
Kirsty Cole1,2, Pradeep Bhandari3, Michael White3
1Department of General Surgery, Portsmouth University Hospitals NHS Trust, Portsmouth, UK.
Abstract:
Endoscopic resection (ER) may offer organ preserving treatment in early (cT1N0) esophago-gastric (OG) cancer. Resectional surgery after ER may be recommended if pathological factors suggesting a risk of occult nodal metastasis are identified. Decision-making in this setting is complex, as patients must weigh the unknown risk of cancer progression with surveillance, against the more tangible and measurable impact of major surgery. Understanding patient priorities and values in making this decision is essential to support informed, patient-centered care. A semi-structured interview study was conducted. Patients who had previously undergone ER for early OG cancer were included. Patients were asked to consider a scenario in which they might be recommended either resectional surgery or endoscopic surveillance, and respond based on their own experiences and background. Interviews explored experiences of receiving the diagnosis, decision-making priorities, and joint decision-making preferences. Treatment-related anxiety was assessed using questions based on the validated cancer worry score. All interviews were audio-recorded, transcribed verbatim, and analyzed using thematic content analysis until data saturation was achieved. Thematic saturation was achieved after 17 interviews. Long-term quality of life and independence emerged as the most important factors influencing decision-making. Overall survival was highly valued, and the fear of operative mortality generally low. Cancer-related anxiety was common, particularly among patients who had recently undergone ER. Participants preferred to be involved and included in the decisions but generally wanted their clinicians to guide choices, and trusted their recommendations. Statistical risk information was often considered overwhelming or less useful for patients. The intensity of post-ER surveillance was a challenge for participants, with mixed impact. While many patients accepted this to avoid surgery, for others cancer-related anxiety or the burden of surveillance was reason to prefer surgical treatment. To conclude, decision-making after ER for early OG cancer reflects a complex interplay of physical, psychological, and logistical priorities, which may fit poorly into current guidelines for early OG cancer therapy. Patient-centered counseling must consider long-term quality of life, provide flexible communication, and incorporate balanced multidisciplinary input to facilitate informed and individualized decisions.
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