title: Measuring patients' experiences with palliative care: the Consumer Quality Index Palliative Care.
abstract: BACKGROUND
  The Consumer Quality Index Palliative Care (CQ-index PC) is a structured questionnaire for measuring the quality of palliative care from the perspective of care users. CQ-indices assess which care aspects need quality improvement by relating answers about actual care experiences to answers about the importance of certain aspects of care.
  
  
  METHODS
  To improve the chance that the new instrument has good content validity, a literature study and individual and group discussions were performed, and a steering committee was consulted to establish the instrument's face and content validity. The questionnaire was administered to patients with a life expectancy of 6 months or less and/or who were receiving palliative treatment. Descriptive analyses were carried out on the items about actual care experiences and the importance of care aspects, and on 'need for improvement' scores.
  
  
  RESULTS
  15 care organisations participated. 133 patients met the inclusion criteria (net response n=85). Patients considered the following aspects the most important: 'offering help in good time in acute situations', 'caregivers having the necessary expertise' and 'caregivers taking the patient seriously'. The three care aspects with the highest 'need for improvement' scores were: 'support when the patient feels depressed', 'support when the patient is anxious' and 'support when the patient has shortness of breath'.
  
  
  CONCLUSIONS
  The CQ-index PC provides opportunities for care organisations to assess which care aspects have the highest priority for quality improvement within their organisation. Further research is needed to assess whether the instrument has enough discriminative power to assess differences between organisations.
authors.affiliation: Department of Public and Occupational Health, VU University medical center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands.
authors.forename: Susanne J J
authors.initials: SJ
authors.lastname: Claessen
authors.forename: Anneke L
authors.initials: AL
authors.lastname: Francke
authors.forename: Herman J
authors.initials: HJ
authors.lastname: Sixma
authors.forename: Anke J E
authors.initials: AJ
authors.lastname: de Veer
authors.forename: Luc
authors.initials: L
authors.lastname: Deliens
mesh_terms: D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D010166:Palliative Care / Q000706:statistics & numerical data*; D017060:Patient Satisfaction / Q000706:statistics & numerical data*; D011594:Psychometrics; D011787:Quality of Health Care / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires / Q000592:standards*