Patient reported outcome measures of quality of end-of-life care: A systematic review

Abstract

End-of-life (EoL) care1 The term EoL care has evolved as an umbrella term that encompasses all aspects of care related to death and dying provided towards the end of life [2]. There is no consensus in the literature regarding the time-frame it is applied to; definitions range from care in the last year of life, to care from time of terminal diagnosis until death. However, it is generally accepted as representing a broad continuum of care for people who are living with, or dying from terminal illness [1]. This wide focus lends itself to the description of care for patients with non-malignant chronic diseases where disease trajectories are more protracted, and prognostication less certain than for patients with cancer. is increasingly used as a generic term in preference to palliative care or terminal care, particularly with reference to individuals with chronic disease, who are resident in community and long-term care (LTC) settings. This review evaluates studies based on patient reported outcome measures (PROMS) of quality of EoL care across all health-care settings. From 1041 citations, 12 studies were extracted by searches conducted in EBSCO, Scopus, Web of Science, PubMed, Cochrane, Open Grey and Google Scholar databases. At present, the evidence base for EoL care is founded on cancer care. This review highlights the paucity of studies that evaluate quality of EoL care for patients with chronic disease outside the established cancer-acute care paradigm, particularly in LTC. This review highlights the absence of any PROMs for the estimated 60% of patients in LTC with cognitive impairment. Patient-reported outcomes (PROs) are critical to understanding how EoL care services and practices affect patients’ health and EoL experience. PROMs describe the quality of care from the patient's perspective and add balance to existing clinical or proxy-derived knowledge on the quality of care and services provided.