Towards a standardized method for developing quality indicators for palliative care

Aims: In recent years, several studies have aimed at developing quality indicators for palliative care with, however, a large variety of methods being used. In the 'Quality Indicators for Palliative Care' study (Q-PAC study) we tried to work out a scientifically rigorous method to develop a comprehensive and valid quality indicator set, able to serve as a standardized method.
Methods and results: The followed method involved 4 phases. First, an extensive literature review was performed to identify existing international quality indicators, as well as relevant dimensions and themes for quality of palliative care. Second, the most important themes for quality of palliative care were withheld based on an expert panel scoring. Third, for the prioritized themes, quality indicators were scored by a different multidisciplinary expert panel for usability and necessity, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included perspectives of caregivers and policy makers in palliative care, as well as of patients and next-of-kin. In a fourth phase, the concept set is tested and evaluated in palliative practice for usability and feasibility. In this phase the indicators are translated into questionnaires presented to patients, next-of-kin and caregivers. To stimulate the acceptance and use of the indicators, stakeholders, including the national palliative care organizations, are involved throughout the whole project.
Conclusion: Our 4 phased indicator development resulted in a set applicable to all patients in all palliative care settings, includes patient and next-of-kin perspectives, and covers outcome, process, and structure indicators. The proposed method can contribute to a more standardized method for developing a set of quality indicators for palliative care, both meeting the required scientific rigor and creating a sound basis to achieve the comprehensiveness needed in a set of quality indicators for palliative care.