A comparison of palliative care outcome measures used to assess the quality of palliative care provided in Residential Aged Care Facilities: a systematic review

Abstract

Provision of palliative care in residential aged care facilities (RACFs) is important but limited research has been undertaken to investigate the most appropriate outcome measures for use in this setting. This systematic review aimed tomeasure the psychometric properties (reliability/validity) and feasibility of palliative outcome measures used to assess the quality of palliative care provided in residential aged care facilities. This review considered studies reporting on the psychometric properties of palliative care outcome measures that have been used in assessing the quality of palliative care provided in residential aged care facilities, including support to family. Measures may be those completed by a health professional, the person receiving care or their family. The search strategy aimed to identify both English language published and unpublished studies. A three-step strategy was followed, in which the initial phase consisted of searches of the CINAHL, MEDLINE and PsycINFO databases using keywords or terms. Second, a more extensive search was performed using the appropriate Subject Headings and/or keywords/phrase/strategy for several major databases. Finally, the reference lists or bibliographies of identified reports and articles were hand searched for additional relevant studies. Included studies were assessed by two independent reviewers for methodological quality prior to inclusion in the review using an appraisal checklist developed for the review based on the review methods of Zwakhalen et al to evaluate validity, reliability and feasibility. The database and hand searches yielded 441 articles for review of which 17 were duplicates leaving 422 abstracts which were critically appraised for relevance to the review based on the title and abstract. After applying the inclusion and exclusion criteria, twenty three abstracts were retained and full articles were retrieved for screening by the two authors. Of these twenty three articles, ten were included in the final review. The ten articles provide specific information on the psychometric properties of ten outcome measures. Of the ten included articles, four report on the psychometric properties of the outcome measure used exclusively within the residential aged care setting while the remaining six measures report the use in a sub-population. The Family Perceptions of Care Scale (FPCS) is considered by the authors as the most suitable outcome measure for use in RACFs. The FPCS has a number of properties that has led to its preferred selection, in particular the development and testing of the scale which occurred exclusively in the RACF population. This scale has excellent content validity, covering all essential domains of palliative care. It has a robust factor structure and is simple to administer and score. Of the remaining nine measures, a further two were also considered suitable for measuring quality of palliative care in RACFs. These are the Quality of Dying in Long Term Care (QOD-LTC) scale and the Toolkit Interview. Based on psychometric qualities, the outcome measure of choice from this review is the Family Perceptions of Care Scale although further psychometric and clinical research needs to be conducted. Limitations regarding the use of outcome measures for assessing quality in this setting include reliance on proxy ratings and limited psychometric testing for some of the measures specifically in the RACF population.