Measuring patients’ experiences with palliative care: the Consumer Quality Index Palliative Care
- 1Department of Public and Occupational Health, VU University medical center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands
- 2NIVEL, Netherlands Institute for Health Services Research, Utrecht, The Netherlands
- 3End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium
- Correspondence to Dr Susanne JJ Claessen, Department of Public and Occupational Health, VU University medical center, EMGO Institute for Health and Care Research, P.O. Box 7057, Amsterdam 1007 MB, The Netherlands;
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.
- Received 11 May 2011.
- Accepted 14 August 2012.
- Published Online First 20 September 2012
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