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

Kinghorn P, Coast J.  What is the purpose of end of life care?  An essential consideration when developing a framework for economic evaluation. Palliative Medicine.  2019; 33(7):823–831. doi: 10.1177/0269216319839635

(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.

Froggatt K, Best A, Bunn F, Burnside G, Coast J, Dunleavy L, Goodman C, Hardwick B, Jackson C, Kinley J, Davidson Lund A, Lynch J, Mitchell P, Myring G, Patel S, Algorta G P, Preston N, Scott D, Silvera K, Walshe C.  A group intervention to improve quality of life for people with advanced dementia living in care homes: the Namaste feasibility cluster RCT.  Health Technology Assessment 2020;24(6) doi: 10.3310/hta24060

Gühne U, Dorow M, SteinJ, Löbner M, Dams J, Coast J, Kinghorn P, König H-K, Riedel-Heller SG.  Valuing end-of-life care: translation and content validation of the ICECAP-SCM measure.  BMC Palliative Care. 2021;20:29.  doi: 10.1186/s12904-021-00722-5

Myring G, Mitchell PM, Kernohan WG, McIlfatrick S, Cudmore S, Finucane AM, Graham-Wisener L, Hewison A, Jones L, Jordan J, McKibben L, Muldrew DHL, Zafar S, Coast J. An analysis of the construct validity and responsiveness of the ICECAP-SCM capability wellbeing measure in a palliative care hospice setting.  BMC Palliative Care.  (In press.)

(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 TN, Huynh E, Coast J.  Hospice patients can participate in carefully designed choice experiments to value supportive care outcomes. BMJ Supportive & Palliative Care.  2019;9(4):e37 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

Canaway A, Al-Janabi H, Kinghorn P, Bailey C, Coast J.  Broadening the scope of economic evaluation at end of life: including ‘close-persons’ within economic evaluation.  PharmacoEconomics. 2019;37(4):573–583. doi: 10.1007/s40273-019-00786-5

Kinghorn P, Canaway A, Bailey C, Al-Janabi H, Coast J.  A deliberative approach to valuing capabilities: assessing and valuing changes in the well-being of those close to patients receiving supportive end of life care.  Journal of Human Development and Capability.  online first: doi: 10.1080/19452829.2021.2008885

(5) Conducting exploratory work on weighting across measures; 

Coast J, Bailey C, Canaway A, Kinghorn P.  “It’s not a scientific number, it’s just a feeling”: populating a multi-dimensional end-of-life decision framework using deliberative methods.  Health Economics.  2021;30(5):1033-1049. doi: 10.1002/hec.4239

(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.

Coast J, Bailey C, Canaway A, Kinghorn P.  “It’s not a scientific number, it’s just a feeling”: populating a multi-dimensional end-of-life decision framework using deliberative methods.  Health Economics.  2021;30(5):1033-1049. doi: 10.1002/hec.4239