Title:
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Information and informed consent in oesophagogastric cancer surgery
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Oesophagogastric cancer represents a major healthcare burden in the UK.
Surgery is the mainstay of treatment and often represents the only chance of
long-term survival. However, treatment is associated with major morbidity and
mortality and a potentially irreversible deterioration in quality of life.
Authorising surgery is therefore an enormous decision for patients to make,
often when anxious and unwell. The aim of this thesis was to explore the
provision of, and need for, information before oesophagogastric cancer surgery.
A validated questionnaire surveyed patients' views of information importance,
including questions about the cancer and prognosis, tests, treatments, and impact
on physical and psychosocial health. Audio-recorded out-patient consultations,
followed by semi-structured interviews, supplemented questionnaire data and
explored information provision and patients' information preferences using
thematic analysis. Patients' understanding of visual information was assessed
through interviews in which patients were asked to interpret series of graphs
depicting hypothetical multidimensional quality of life data.
A total of 136 of 226 (60.2%) invited patients completed the questionnaire.
Patients rated most information highly but, in particular, potentially sensitive
information (such as survival), complex information (such as the rationale
behind treatment recommendations) and quality of life. 18 (17 male) patients
underwent audio-recorded consultations and interviews. Consultations were
found to involve uniform, methodical, surgeon-centric discussions of the process
of surgery and short-term outcomes, and inconsistent, typically patient led
discussions of quality of life issues. Interviews highlighted patients' desire for
information about treatment eligibility, the process of surgery itself, survival and
quality of life. 132 of 194 (68%) invited patients were interviewed to assess
understanding of visual information. The majority understood simple (87%) and
complex (81 %) multidimensional data.
Recommended. information exchange between surgeons and patients selected for
oesophagogastric cancer surgery includes communication of sensitive and
complex concepts as well as information regarding the process of surgery. This
research will inform the development of an intervention to improve information
provision before cancer surgery.
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