Decision making about prognostication in patients with uveal melanoma
Research type
Research Study
Full title
DECISION MAKING ABOUT PROGNOSTICATION IN PATIENTS WITH UVEAL MELANOMA (D-PROG)
IRAS ID
234048
Contact name
Peter Fisher
Contact email
Sponsor organisation
University of Liverpool
Duration of Study in the UK
0 years, 11 months, 27 days
Research summary
The Liverpool Ocular Oncology Centre (LOOC) offers uveal melanoma (UM) patients a prognostic test that predicts 10-year survival with sufficient accuracy to give patients personalised estimates of life expectancy. Outcomes for some patients will be 'good', a near-normal life expectancy, and others 'poor', an attenuated life expectancy attributable to metastatic disease. Infrequently the test fails because an adequate biopsy cannot be taken. Many patients claim to benefit from this information because it reduces uncertainty, but the test does not lead to life-extending treatment and patients may be distressed when receiving poor prognoses. It is important that patients understand the implications of accepting the test, or not accepting it, and make a decision that best reflects their personal values and priorities.
Most patients accept the test. A pilot study (Cook, et al., 2010) showed that very few patients fully understand their options or make considered judgements. Instead they make simple ‘gut level’ intuitive decisions, such as a general preference for certainty. Arguably these are important expressions of preference, but are inconsistent with General Medical council (GMC) guidance that patients should make decisions on the basis of fully understanding and considering options. Thus, it is unclear whether these decisions can be regarded as well-made. The pilot study was limited in its sampling, analysis and scope.
Using a better sampling and analytic framework, we plan to interview LOOC patients to:
1) Identify the decision-making strategies used by patients offered prognostic testing.
2) Assess to what extent these different strategies could be considered as leading to ‘good’ decisions, given the circumstances.
3) Make recommendations about how practitioners can best offer prognostic testing and support patients’ decisions about it
REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
17/NW/0542
Date of REC Opinion
20 Nov 2017
REC opinion
Further Information Favourable Opinion