Abstract
BackgroundIn 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 designFirstly, 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.ConclusionOur 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.
Highlights
In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care
Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings
In the past decade a variety of studies have focused on quality indicators for palliative care, the methods found in the literature by which indicators were developed were not always clearly presented and not always seemed to follow a systematic approach involving different steps of the development process [10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26]
Summary
There have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. Two recent systematic efforts have developed a nationwide quality register system to measure outcomes and quality of palliative care services: the Palliative Care Outcomes Collaboration (PCOC)-study in Australia [27], and a similar registration project in Sweden [28]. While these projects have resulted in very useful national quality monitoring systems, they do not strictly make use of quality indicators but mainly focus on outcome measures. They did not seem to aim for a level of comprehensiveness necessary to evaluate the various dimensions of palliative care
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