Palliative care (PC) lacks a universally accepted definition and standardized outcome measures. This systematic review analyzes existing outcome assessment instruments used in research and clinical practice to identify potential tools for hospice care outcome studies.
A systematic literature search of Cinahl, MEDLINE, EMBASE, and PsychoINFO databases (up to December 2009) yielded 8,607 articles. After removing duplicates and irrelevant publications, 725 articles detailing outcome assessment in PC were analyzed. These studies utilized at least 528 different outcome assessment instruments, targeting patients, family members, staff, and the healthcare system. Fifteen patient-focused outcome domains emerged: quality of life, quality of care, symptoms, performance status, psychological symptoms, decision-making and communication, place of death, disease stage, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs.
Most instruments were used infrequently, with only a minority being validated. Validated instruments saw more frequent application. This highlights a need for greater standardization and validation of outcome measures in hospice care to ensure consistent and reliable data collection. Utilizing validated tools contributes to a more robust understanding of patient experiences and the effectiveness of hospice interventions.
The vast number of existing instruments makes consensus on a universal set for PC outcome assessment challenging. However, a framework with a curated set of appropriate, validated instruments could harmonize the tools used in research and clinical practice. This standardization would improve comparability across studies and identify areas where new instrument development is needed. Future research should focus on validating existing tools and developing new ones to address gaps in outcome assessment for hospice care specifically. This will facilitate more effective outcome studies and ultimately improve the quality of care provided to patients and their families.
