Patients with advanced cancer often do not receive high-quality pain and symptom management or support with coordination of care, communication, and decision making. Implementing quality indicators that are reflective of the scope of care, feasible to implement, and supported by evidence might help to identify areas and settings most in need of improvement. However, recent reviews and policy initiatives identified only a few indicators that met these criteria. To help advance quality indicator development and implementation in this area, we developed a conceptual framework based on previous related initiatives, updated reviews of end-of-life cancer quality indicators and relevant data sources, and expert input. The framework describes five steps for developing and assessing a quality indicator for end-of-life care, defining the 1) population of focus, 2) broad quality domains, 3) specific target areas, 4) steps of the care process, and 5) evaluation criteria for quality indicators. The defined population includes seriously or terminally ill cancer patients, who are unlikely to recover or stabilize, and their families. Domains include the structure and processes of care; the physical, psychiatric, psychosocial, spiritual, and cultural aspects of care; as well as the care of the imminently dying, ethical and legal issues, and the delivery of care. Evaluation criteria include importance; scientific acceptability, including validity, evidence to improve outcomes, reliability, responsiveness, and variability; usability; and feasibility, including ready data sources. By using this conceptual framework, indicator developers, researchers, and policymakers can refine and implement indicator sets to effectively evaluate and improve care at the end of life.
"Based on the mean scoring (highest tertile across all domains) a number of themes were selected. To be selected, there had to be consensus among the panel members for each indicator, i.e. not more than four members scoring outside the mean range [1-9]. With every domain not then represented, we included one additional theme most often indicated as one of the three most important themes within the domains that were underrepresented. "
[Show abstract][Hide abstract] 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.
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.
BMC Palliative Care 02/2013; 12(1):6. DOI:10.1186/1472-684X-12-6 · 1.78 Impact Factor
"In India, where quality indicators have not yet been set and service evaluation is at an embryonic stage, there is the chance to learn from omissions in developed countries, and ensure that cultural and spiritual aspects of palliative care, and the needs of family carers, are taken into account in national guidance and audit. Ultimately, national standards and quality indicators also need to be subjected to testing through well-designed trials. "
[Show abstract][Hide abstract] ABSTRACT: Palliative care in India has made enormous advances in providing better care for patients and families living with progressive disease, and many clinical services are well placed to begin quality improvement initiatives, including clinical audit. Clinical audit is recognized globally to be essential in all healthcare, as a way of monitoring and improving quality of care. However, it is not common in developing country settings, including India. Clinical audit is a cyclical activity involving: identification of areas of care in need of improvement, through data collection and analysis utilizing an appropriate questionnaire; setting measurable quality of care targets in specific areas; designing and implementing service improvement strategies; and then re-evaluating quality of care to assess progress towards meeting the targets. Outcome measurement is an important component of clinical audit that has additional advantages; for example, establishing an evidence base for the effectiveness of services. In resource limited contexts, outcome measurement in clinical audit is particularly important as it enables service development to be evidence-based and ensures resources are allocated effectively. Key success factors in conducting clinical audit are identified (shared ownership, training, managerial support, inclusion of all members of staff and a positive approach). The choice of outcome measurement tool is discussed, including the need for a culturally appropriate and validated measure which is brief and simple enough to incorporate into clinical practice and reflects the holistic nature of palliative care. Support for clinical audit is needed at a national level, and development and validation of an outcome measurement tool in the Indian context is a crucial next step.
Indian Journal of Palliative Care 03/2010; 16(1):8-15. DOI:10.4103/0973-1075.63128
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