Background: As different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care.
Method: A systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups.
Results: The literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often.
Conclusions: The wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.