title: Costs of Family Caregiving in Palliative Care (COFAC) questionnaire: development and piloting of a new survey tool.
abstract: BACKGROUND
  Family caregivers play an important role in the care of patients receiving palliative care, yet little is known about the financial impact of family caregiving in this context. A lack of existing validated tools for collecting data on the costs of family caregiving in palliative care has resulted in a weak and limited evidence base. The aim of the study was to describe the development and initial piloting of a new survey tool which captures data on the costs of family caregiving in palliative care: the Costs of Family Caregiving (COFAC) questionnaire.
  
  
  METHODS
  Development and piloting of the COFAC questionnaire involved 2 phases: (1) questionnaire development based on published evidence and cognitive interviews with service users; and (2) validity testing involving expert review and piloting with bereaved caregivers.
  
  
  RESULTS
  Questionnaire content was generated from previously published research and related to work-related costs, carer time costs and out-of-pocket expenses. 2 group cognitive interviews with 15 service users refined content of the draft questionnaire. Face validity was established through expert review with 9 academics and clinicians. Piloting with 8 bereaved caregivers established acceptability and feasibility of administration.
  
  
  CONCLUSIONS
  The COFAC tool has been shown to be valid, acceptable to bereaved caregivers and feasible to administer. The COFAC questionnaire is recommended for economic research in palliative care which seeks to capture data from a broad societal perspective which includes family caregiver costs.
authors.affiliation: The School of Nursing and Midwifery, The University of Sheffield, Sheffield, UK.
authors.forename: Clare
authors.initials: C
authors.lastname: Gardiner
authors.affiliation: Sheffield Teaching Hospitals, Sheffield, UK.|Sheffield Institute for Translational Neuroscience, University of Sheffield, Sheffield, UK.
authors.forename: Chris
authors.initials: C
authors.lastname: McDermott
authors.affiliation: Academic Unit of Health Economics, University of Leeds, Leeds, UK.
authors.forename: Claire
authors.initials: C
authors.lastname: Hulme
mesh_terms: D017028:Caregivers / Q000191:economics* / Q000523:psychology; D017281:Cost of Illness; D003362:Cost-Benefit Analysis / Q000379:methods*; D003365:Costs and Cost Analysis / Q000706:statistics & numerical data*; D005240:Feasibility Studies; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010166:Palliative Care / Q000191:economics* / Q000523:psychology; D010865:Pilot Projects; D011795:Surveys and Questionnaires / Q000592:standards*
keywords: costs and cost analysis; economic cost; family caregivers; financial cost; palliative care