This European Research Council funded project was conducted by researchers from the University of Birmingham between April 2011 and September 2015. The project involved collaboration with Marie Curie Cancer Care and researchers at the University of South Australia.
The Project involved six stages of work:
1) Semi-structured interviews with key stakeholders in order to explore: the purpose and nature of end of life care, current provision, outcomes associated with end of life care and the appropriateness of evaluative frameworks:
Kinghorn P & Coast J. (2018) “Assessing the capability to experience a ‘good death’: A qualitative study to directly elicit expert views on a new Supportive Care Measure grounded in Sen’s Capability Approach”. PLOS ONE. DOI: 10.1371/journal.pone.0193181
(2) Assessing the feasibility of use of the ICECAP-SCM with both patients and proxies, as well as construct validity and sensitivity to change:
Sutton E & Coast J. (2014) “Development of a supportive care measure for economic evaluation of end of life care using qualitative methods” Palliative Medicine. 28:2, pp151-7. Doi: 10.1177/0269216313489368.
Bailey C, Orlando R, Kinghorn P, Armour K, Perry R, Jones L, Coast J. (2016) “The ICECAP-SCM tells you more about what I’m going through’: A think-aloud study measuring quality of life among patients receiving supportive and palliative care”. Palliative Medicine. 30:7, pp642-652. DOI: 10.1177/0269216315624890
Coast J, Bailey C, Orlando R, Armour K, Perry R, Jones L & Kinghorn P. (2018) “Adaptation, acceptance and adaptive preferences in health and capability well-being measurement amongst those approaching end of life”. The Patient - Patient-Centered Outcomes Research. 11:5, pp539-546: DOI 10.1007/s40271-018-0310-z
Bailey C, Kinghorn P, Orlando R, Coast J. “Using ‘think-aloud’ and interview data to explore patient and proxy completion of health and capability measures at the end of life”, in Coast J. (Ed.) Qualitative Methods for Health Economics, Rowman & Littlefield International, London.
(3) Eliciting values for this descriptive system from the general public using the best-worst scaling technique and assessing the feasibility of obtaining values from patients receiving end of life care:
Coast J, Huynh E, Kinghorn P, Flynn T (2016) “Complex Valuation: Applying ideas from the complex intervention framework to valuation of a new measure for end of life care”, PharmacoEconomics, 34, 499-508.
Huynh E, Coast J, Rose J, Kinghorn P, Flynn T. (2017) “Values for the ICECAP-Supportive Care Measure (ICECAP-SCM) for use in economic evaluation at end of life”. Social Science & Medicine, 189; pp114-128; doi. 10.1016/j.socscimed.2017.07.012
Bailey C, Kinghorn P, Hewison A, Radcliffe C, Flynn T, Huynh E, & Coast J. “Hospice patients participation in choice experiments to value supportive care outcomes”, BMJ Supportive & Palliative Care. In Press. doi: 10.1136/bmjspcare-2018-001582
(4) Developing a descriptive system to evaluate the impact on families' capabilities of end of life care, using in-depth interviews to develop conceptual attributes and exploring deliberative methods with which to obtain values for those attributes:
Canaway A, Al-Janabi H, Kinghorn P, Bailey C, Coast J. (2016) “Development of a measure (ICECAP-Close Person Measure) through qualitative methods to capture the benefits of end-of-life care to those close to the dying for use in economic evaluation.” Palliative Medicine. 31:1, pp53-62. doi: 10.1177/0269216316650616
Canaway A, Al-Janabi H, Kinghorn P, Bailey C & Coast J. “Incorporating novel qualitative methods within health economics: The use of pictorial tools”, in Coast J. (Ed.) Qualitative Methods for Health Economics, Rowman & Littlefield International, London
(5) Conducting exploratory work on weighting across measures;
(6) Exploring views of the public and key stakeholders about appropriate decision-rules for end of life care, using a combination of focus groups and in-depth interviews:
Kinghorn P, Canaway A, Bailey C, Coast J. “Use of deliberative methods to facilitate and enhance understanding of the weighting of survey attributes”, in Coast J. (Ed.)Qualitative Methods for Health Economics, Rowman & Littlefield International, London.
GENERAL References from EconEndLife
Coast J. (2019) “Assessing capability in economic evaluation: a life course approach? The European Journal of Health Economics. First online: 08 January 2019
Campbell CL, Bailey C, Armour K, Perry R, Orlando R, Kinghorn P, Jones L, Coast J. (2016) “A team approach to recruitment in hospice research: Engaging patients, close persons and health professionals.” International Journal of Palliative Nursing. 22:7, pp324-332.
Coast J, Bailey C, Canaway A, Kinghorn P. (2016) “Measuring and Valuing Outcomes for Care at the End of Life: The Capability Approach” in Round J. (Ed.) Care at the End of Life: An economics Perspective, Springer International Publishing, London.
Kinghorn P & Coast J (2013) “A health economists’ response to the review of the Liverpool Care Pathway” Journal of Palliative Medicine, 16(12) 1614-1616.
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