title: The CaregiverVoice Survey: A Pilot Study Surveying Bereaved Caregivers To Measure the Caregiver and Patient Experience at End of Life.
abstract: To integrate patient and caregiver feedback into end-of-life (EOL) care improvement, we tested the feasibility of a standardized, common instrument to measure care experiences across multiple settings in the last three months of life.
  
  
  
  We developed and tested a survey, called the CaregiverVoice survey, which combined two validated questionnaires, the FAMCARE-2 and VOICES-SF. A retrospective, observational design was used to survey bereaved caregivers of decedents who had received homecare services in Ontario, Canada.
  
  
  
  In total, 330 surveys were completed (overall response rate of 13%, regional rates ranged from 4% to 83%). There was less than 5% missing data. Most patients received care from multiple settings in the last three months of life, including 60% for which a hospital stay was reported. The overall mean of the 19 FAMCARE-2 items was 1.7 (SD 0.7), with 72% of ratings as 1 very satisfied to 2 satisfied. On VOICES-SF items, 6% of respondents rated "all end-of-life services" as fair or poor, 24% as good, and 70% as excellent or outstanding, with variation depending on care site rated. 13% of caregivers reported that pain management was fair or poor in the last week of life.
  
  
  
  This pilot study provides preliminary evidence that it is feasible to capture the patient and caregiver experience at EOL using a comprehensive survey, though survey distribution method greatly affected response rates. The majority of responses rated care as excellent or very good, although several specific areas for improvement were identified.
authors.affiliation: 1 Department of Oncology, McMaster University , Hamilton, Ontario, Canada .|2 Escarpment Cancer Research Institute , Hamilton, Ontario, Canada .
authors.forename: Hsien
authors.initials: H
authors.lastname: Seow
authors.affiliation: 1 Department of Oncology, McMaster University , Hamilton, Ontario, Canada .
authors.forename: Daryl
authors.initials: D
authors.lastname: Bainbridge
authors.affiliation: 3 Cancer Care Ontario , Toronto, Ontario, Canada .
authors.forename: Deanna
authors.initials: D
authors.lastname: Bryant
authors.affiliation: 4 Departments of Kinesiology and Physical Education and Health Sciences, Wilfrid Laurier University , Waterloo, Ontario, Canada .
authors.forename: Dawn
authors.initials: D
authors.lastname: Guthrie
authors.affiliation: 3 Cancer Care Ontario , Toronto, Ontario, Canada .
authors.forename: Sara
authors.initials: S
authors.lastname: Urowitz
authors.affiliation: 3 Cancer Care Ontario , Toronto, Ontario, Canada .
authors.forename: Victoria
authors.initials: V
authors.lastname: Zwicker
authors.affiliation: 5 Department of Family Medicine, McMaster University , Hamilton, Ontario, Canada .
authors.forename: Denise
authors.initials: D
authors.lastname: Marshall
mesh_terms: D017028:Caregivers; D006801:Humans; D009864:Ontario; D010865:Pilot Projects; D012189:Retrospective Studies; D011795:Surveys and Questionnaires; D013727:Terminal Care