Measuring patients' experiences with palliative care: the Consumer Quality Index Palliative Care

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.

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.

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'.

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.