Quality indicators for dementia and older people nearing the end of life: A systematic review

Abstract

Background: Robust quality indicators (QIs) are essential for monitoring and improving the quality of care and learning from good practice. We aimed to identify and assess QIs for the care of older people and people with dementia who are nearing the end of life and recommend QIs for use with routinely collected electronic data across care settings. Methods: A systematic review was conducted, including five databases and reference chaining. Studies describing the development of QIs for care of older people and those with dementia nearing the end of life were included. QIs were categorized as relating to processes or outcomes, and mapped against six care domains. The psychometric properties (acceptability, evidence base, definition, feasibility, reliability, and validity) of each QI were assessed; QIs were categorized as robust, moderate, or poor.Results: From 12,980 titles and abstracts screened, 37 papers and 976 QIs were included. Process and outcome QIs accounted for 780 (79.7%) and 196 (20.3%) of all QIs, respectively. Many of the QIs concerned physical aspects of care (n = 492, 50.4%), and very few concerned spiritual and cultural aspects of care (n = 19, 1.9%). Three hundred and fifteen (32.3%) QIs were robust and of those 220 were measurable using routinely collected electronic data. The final shortlist of 71 QIs came from seven studies.Conclusions: Of the numerous QIs developed for care of older adults and those with dementia nearing the end of life, most had poor or moderate psychometric properties or were not designed for use with routinely collected electronic datasets. Infrastructure for data availability, combined with use of robust QIs, is important for enhancing understanding of care provided to this population, identifying unmet needs, and improving service provision.

Selecting outcomes for pragmatic clinical trials in dementia care: The IMPACT Collaboratory iLibrary

“…To identify measures, we searched an IMPACT‐designed database of non‐pharmacologic clinical trials enrolling people with ADRD registered in http://clinicaltrials.gov, as well as recently published reviews of ADRD‐related outcomes research 15–19 . We also reviewed outcome measures used by investigators leading IMPACT pilot pragmatic trials.…”

“…To identify measures, we searched an IMPACT-designed database of non-pharmacologic clinical trials enrolling people with ADRD registered in ClinicalTrials.gov, as well as recently published reviews of ADRD-related outcomes research. [15][16][17][18][19] We also reviewed outcome measures used by investigators leading IMPACT pilot pragmatic trials. Outcome measures were included if they were embedded in an existing administrative data source, if they were clinical assessments used in a pragmatic trial or pilot trial, or if they had clear potential for this use.…”

Patterns of unplanned hospital admissions among people with dementia: from diagnosis to the end of life

“…Numbers of unplanned hospital admissions were calculated for every 6 months from diagnosis to death or study end (31st March 2018). Six-monthly periods are commonly used for measuring care quality for people with dementia, and enable exploration of changes at a more granular level than yearly rates [ 22 ]. The secondary outcome was the percentage of time spent as an inpatient in hospital due to unplanned hospital admissions.…”

DNVF-Memorandum Versorgungsforschung im letzten Lebensjahr

“…Aufgrund der Bevölkerungsentwicklung ist der größte Anstieg des palliativen Versorgungsbedarfs bei Menschen mit Demenz zu vermuten [45]. Die Basis für eine angemessene Versorgung der Betroffenen bildet eine spezifische Bedarfsermittlung [46]. Die unterschiedlichen Einflussfaktoren, variierenden methodischen Ansätze und Ergebnisse zeigen, dass Bedarfsschätzungen für die Palliativversorgung herausfordernd sind -für eine angemessene Ressourcenallokation aber unabdingbar.…”