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Open Access Study protocol

Towards a standardized method of developing quality indicators for palliative care: protocol of the Quality indicators for Palliative Care (Q-PAC) study

Kathleen Leemans1*, Joachim Cohen1, Anneke L Francke23, Robert Vander Stichele1, Susanne JJ Claessen2, Lieve Van den Block14 and Luc Deliens12

Author Affiliations

1 End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Laarbeeklaan 103, Brussels, 1090, Belgium

2 Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Centre, Van der Boechorststraat 7, Amsterdam, 1081 BT, the Netherlands

3 NIVEL. Netherlands Institute for health services research, Otterstraat 118-124, Utrecht, 3513 BN, the Netherlands

4 Department of Family Medicine, Vrije Universiteit Brussel, Laarbeeklaan 103, Brussels, 1090, Belgium

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BMC Palliative Care 2013, 12:6  doi:10.1186/1472-684X-12-6

Published: 8 February 2013

Abstract

Background

In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries.

Methods and design

Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project.

Conclusion

Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care.

Keywords:
Quality indicators; Quality measurement; Palliative care; Quality of care; End of life care; Hospice care; Outcome measures; Developing method