title: Validation of a measure of family experience of patients with serious illness: the QUAL-E (Fam).
abstract: BACKGROUND
  Family members of seriously ill patients experience significant burden as they advocate with providers and participate in key decisions for loved ones. Most assessments focus on patient experience, yet family members' own quality of experience is central to comprehensive care.
  
  
  OBJECTIVE
  This study validated a measure of the quality of family experience, the QUAL-E (Fam), in palliative care.
  
  
  METHODS
  We enrolled family members of terminally ill patients admitted to general medicine services at two hospitals. Items were based on foundational work originally done for the patient instrument, QUAL-E, and interviews of family members of terminally ill patients. Cognitive interviewing was used to refine items, which then underwent formal testing factor analysis. In the first sample, we assessed factor structure. A subsequent sample established predictive validity and test-retest reliability.
  
  
  RESULTS
  The initial item pool was reduced to a four-domain, 35-item scale and administered to the validation sample. Further analyses produced a final brief scale comprising 17 items, demonstrating appropriate convergent and divergent validity. Test-retest reliability demonstrated expected levels of stability in a highly changeable population. The scale provides an assessment of family experience and includes subscales assessing relationship with health care provider and completion. Additional scale items assess symptom experience and issues of preparation.
  
  
  CONCLUSIONS
  The QUAL-E (Fam) is a companion instrument to the patient QUAL-E measure of quality of life at the end of life and is part of a package of assessment tools that can help evaluate the entire patient experience and contribute to quality care.
authors.affiliation: Center for Health Services Research in Primary Care, Durham Veterans Administration Medical Center, Duke University, Durham, North Carolina, USA; Division of General Internal Medicine, Duke University, Durham, North Carolina, USA; Division of Palliative Care, Duke University, Durham, North Carolina, USA; Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina, USA. Electronic address: karen.steinhauser@duke.edu.
authors.forename: Karen E
authors.initials: KE
authors.lastname: Steinhauser
authors.affiliation: Center for Health Services Research in Primary Care, Durham Veterans Administration Medical Center, Duke University, Durham, North Carolina, USA.
authors.forename: Corrine I
authors.initials: CI
authors.lastname: Voils
authors.affiliation: Center for Health Services Research in Primary Care, Durham Veterans Administration Medical Center, Duke University, Durham, North Carolina, USA; Division of General Internal Medicine, Duke University, Durham, North Carolina, USA.
authors.forename: Hayden B
authors.initials: HB
authors.lastname: Bosworth
authors.affiliation: Center for Health Services Research in Primary Care, Durham Veterans Administration Medical Center, Duke University, Durham, North Carolina, USA; Division of General Internal Medicine, Duke University, Durham, North Carolina, USA; Division of Palliative Care, Duke University, Durham, North Carolina, USA; Center for the Study of Aging and Human Development, Duke University, Durham, North Carolina, USA; School of Nursing, Duke University, Durham, North Carolina, USA.
authors.forename: James A
authors.initials: JA
authors.lastname: Tulsky
mesh_terms: D005163:Factor Analysis, Statistical; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D010166:Palliative Care / Q000379:methods* / Q000523:psychology*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires
keywords: Palliative care; caregiving; measurement