Measuring outcomes of palliative care using PROMs

Palliative care is a discipline that aims to improve the quality of life (QoL) of patients and their families facing the challenges associated with life-threatening illnesses through the prevention and relief of suffering. There are several implications why evaluative research in the palliative care sector in Austria is necessary. As the Austrian palliative patient population is diverse and the provision of palliative care is fragmented, it would be of interest to evaluate the quality and effectiveness of the provided care. In light of the increased demand for palliative care and the scarce resources of health care systems, health policymakers are required to make decisions about funding, resource allocation, and reimbursment of an intervention. These require evidence-based cost and outcome evaluations of alternative services and interventions, which have shown to be challenging to conduct for complex interventions, such as those in the palliative care field. To conduct such evaluative research, robust tools are needed that can provide solid evidence. However, currently, it is unknown which of the available instruments assessing patient-reported QoL can produce reliable and valid results for the purpose of quality assurance, evaluation and planning of services within the context of palliative care. Therefore a national, multi-center prospective cohort study will be conducted, in which three QoL questionnaires (EQ-5D-5L, IPOS, ICECAP-SCM) will be repeatedly assessed in approximately 1,500 patients admitted to 16 palliative wards in Austria over a one-year study period. The derived data will allow conducting several methodological analyses that will help to increase the knowledge of suitable non-clinical outcome measures for the palliative care field. For example, the feasibility of the questionnaires will be assessed, which means, testing and comparing completion rates between the questionnaires and patient groups regarding clinical, socioeconomic, and demographic data. Further, it will be tested whether care provider representatives can assign qualitative meaning to the quantitative scores and changes of scores of the questionnaires, which is referred to as actionability. Next, it will be explored in how far the patients` scores on the generic health-related QoL questionnaire (EQ-5D-5L) relates to the scores of the palliative care specific QoL questionnaires (IPOS, ICECAP-SCM), as well as the palliative care specific questionnaires with each other (i.e. testing psychometric validity). In a final step, it will be analyzed whether the QoL scores derived from the IPOS questionnaire, can also be used for (economic) evaluations by predicting scores from the ICECAP-SCM scores. This is referred to as mapping. This planned study will be conducted at the Medical University of Vienna, Center for Public Health, Department of Health Economics in cooperation with the Austrian Palliative Association, Hospice Austria, and the University Hospital of Munich, Germany.