title: '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.
abstract: The ICECAP-Supportive Care Measure is a self-complete questionnaire developed to aid economic evaluation of supportive care interventions.
  
  
  
  To determine the feasibility of completing ICECAP-Supportive Care Measure alongside EQ-5D-5L and ICECAP-A (generic measures used in economic evaluation) among patients receiving hospice care, close persons and healthcare professionals.
  
  
  
  Participants were asked to 'think aloud' while completing ICECAP-Supportive Care Measure and two other generic measures used in economic evaluation, EQ-5D-5L and ICECAP-A, and then participate in a semi-structured interview. From verbatim transcripts, five raters identified the frequency of errors in comprehension, retrieval, judgement and response. Qualitative data were analysed using constant comparison.
  
  
  
  Eligible patients were identified from one UK hospice by a research nurse. Close persons and healthcare professionals were identified by the patient. In all, 72 semi-structured interviews were conducted with patients (n = 33), close persons (n = 22) and healthcare professionals (n = 17).
  
  
  
  Patients and close persons reported that the ICECAP-Supportive Care Measure was most appropriate for measuring their quality of life. It appeared more meaningful, easier to complete and had fewest errors (3.9% among patients, 4.5% among close persons) compared to EQ-5D-5L (9.7% among patients, 5.5% among close persons). Healthcare professionals acknowledged the value of the ICECAP-Supportive Care Measure but had fewer errors in completing the EQ-5D-5L (3.5% versus 6.7%). They found it easier to complete because it focuses on observable health states.
  
  
  
  The ICECAP-Supportive Care Measure is feasible to use and perceived as appropriate for evaluating palliative care interventions. Healthcare professionals with limited knowledge of the patient who act as proxy completers may find the measure difficult to complete.
authors.affiliation: Nursing Institute of Clinical Sciences, University of Birmingham, Birmingham, UK Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
authors.forename: Cara
authors.initials: C
authors.lastname: Bailey
authors.affiliation: Health Economics Unit, Institute of Applied Health Research, University of Birmingham, Birmingham, UK.
authors.forename: Philip
authors.initials: P
authors.lastname: Kinghorn
authors.affiliation: NIHR CLAHRC Wessex Methodological Hub, University of Southampton, Southampton, UK.
authors.forename: Rosanna
authors.initials: R
authors.lastname: Orlando
authors.affiliation: Marie Curie Hospice-West Midlands, West Midlands, UK.
authors.forename: Kathy
authors.initials: K
authors.lastname: Armour
authors.affiliation: Marie Curie Hospice-West Midlands, West Midlands, UK.
authors.forename: Rachel
authors.initials: R
authors.lastname: Perry
authors.affiliation: Marie Curie Palliative Care Research Department, University College London (UCL), London, UK.
authors.forename: Louise
authors.initials: L
authors.lastname: Jones
authors.affiliation: School of Social and Community Medicine, University of Bristol, Bristol, UK jo.coast@bristol.ac.uk.
authors.forename: Joanna
authors.initials: J
authors.lastname: Coast
mesh_terms: D000328:Adult; D000368:Aged; D005190:Family / Q000523:psychology*; D005260:Female; D017051:Hospice Care / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000523:psychology*; D010361:Patients / Q000523:psychology; D010549:Personal Satisfaction; D010820:Physicians / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D057566:Self Report; D011795:Surveys and Questionnaires; D006113:United Kingdom
keywords: Palliative care; economic evaluation; end-of-life care; hospice; measurement; quality of life; think aloud
references.citation: Palliat Med. 2014 Feb;28(2):151-7
references.pmid: 23698452
references.citation: Health Policy. 1996 Jul;37(1):53-72
references.pmid: 10158943
references.citation: Br Med Bull. 2010;96:5-21
references.pmid: 21037243
references.citation: BMJ. 2005 Apr 30;330(7498):1007-11
references.pmid: 15860828
references.citation: Qual Life Res. 2011 Dec;20(10 ):1727-36
references.pmid: 21479777
references.citation: J Am Geriatr Soc. 2002 Jun;50(6):1108-12
references.pmid: 12110073
references.citation: Qual Life Res. 2013 Sep;22(7):1831-40
references.pmid: 23086535
references.citation: Health Econ. 2015 Mar;24(3):258-69
references.pmid: 24254584
references.citation: BMJ. 2002 Apr 13;324(7342):860-1
references.pmid: 11950717
references.citation: Eur J Health Econ. 2013 Jul;14 Suppl 1:S1-3
references.pmid: 23900659
references.citation: Qual Life Res. 2012 Feb;21(1):167-76
references.pmid: 21598064
references.citation: Soc Sci Med. 2008 Sep;67(5):874-82
references.pmid: 18572295
references.citation: Expert Rev Pharmacoecon Outcomes Res. 2014 Aug;14(4):473-82
references.pmid: 24784902
references.citation: Soc Sci Med. 2013 Jun;87:116-22
references.pmid: 23631786
references.citation: Health Econ. 1995 Jul-Aug;4(4):255-64
references.pmid: 8528428
references.citation: JAMA. 2003 May 14;289(18):2387-92
references.pmid: 12746362
references.citation: BMC Med. 2013 Apr 24;11:111
references.pmid: 23618406
references.citation: Health Econ. 2015 May;24(5):625-30
references.pmid: 25204621
references.citation: Health Econ Policy Law. 2012 Oct;7(4):431-9
references.pmid: 23079301
references.citation: Health Econ. 2002 Jan;11(1):1-8
references.pmid: 11788974