Quality indicators for dementia and older people nearing the end of life (Policy Brief)

An evidence-based Policy Brief Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

Quality indicators for dementia and older people nearing the end of life Key findings We systematically reviewed the literature and identified 976 quality indicators (QIs) addressing care of older people and people with dementia nearing the end of life. We provide 71 robust QIs which can be used with routinely collected electronic data, across care settings.

Policy Recommendations • Investment into the development of infrastructure needed for population-level data collection across care settings is urgently needed.

• Prioritising routine electronic data collection for quality indicators could provide an overview of the quality of care provided to this large and growing population.

• Appropriate quality measures such as quality indicators and patient-reported outcome measure must be implemented to address the needs of patients and families, and aid services with provision of high quality care.

Why is this research important ?

Physical

The number of older people and people Operational with dementia who have palliative care Older people Communication, needs is increasing. Monitoring and ACP, ethical & improving health care of populations legal require quality indicators, which can be Psychosocial People with obtained from routinely collected dementia Spiritual & electronic datasets. Development and cultural testing of quality indicators are resource-intensive and time-consuming Both processes. Numerous quality indicators have been developed to assess care of older people and those Number QIs used retrospectively QIs for use with a population likely of QIs with dementia nearing the end of life. after death to be approaching the EOL/have However, their properties and palliative care needs robustness have not been systematically synthesized.

Figure 1: Shortlist of recommended QIs for use with routinely collected electronic datasets (n = 71)

Please reference as Yorganci E, Sampson EL, Gillam J, Aworinde J, Leniz J, Williamson LE, Cripps RL, Stewart R, Sleeman KE. Quality indicators for dementia and older people nearing the end of life: A systematic review. Journal of the American Geriatrics Society. 2021 Jul 31.

An Evidence-based Policy Brief Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation

What did we do ?

We conducted a systematic review to identify and assess quality indicators for the care of older people and people with dementia who are nearing the end of life. These were categorised as health processes or outcomes, and mapped against six care domains (Figure 1: ‘physical’, ‘operational’, ‘psychosocial’, ‘communication, advance care planning (ACP), ethical & legal’, ‘spiritual & cultural’ and ‘other’). We assessed quality indicators using acceptability, evidence base, definition, feasibility, reliability, and validity. Quality indicators were categorized as robust, moderate, or poor. We recommend a shortlist of quality indicators for use with routinely collected electronic data across care settings.

What did we find ?

• We identified 976 quality indicators (QIs); 508 QIs were judged to be robust, 231 moderate, and 237 poor in terms of their psychometric properties.

• 71 robust QIs for care of older people and people with dementia nearing the end of life, which can be used with routinely collected electronic data, across care settings are provided.

• We identified few QIs may have been developed regarding the legal, ethical, spiritual, and cultural aspects of care.

• Many of the shortlisted QIs in the physical care domain focused on multimorbidities, symptoms, and treatments, which reflect a biomedical approach to care of these populations • Operational QIs such as hospital admissions before death are widely used by researchers and policy makers; hence, their psychometric properties maybe better established • Extraction of the QIs in the communication, ACP, and ethical and legal domain may be less straightforward from electronic systems, but psychometric robustness of these QIs should encourage further adaption of these QIs into practice.

Contact Emel Yorganci, ESRC PhD Training Fellow, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King's College London Email: emel.yorganci@kcl.ac.uk Telephone: +44 (0) 7823327712 @emelasml

What did we conclude ?

To guide our understanding of quality of care provided to these populations, to identify unmet needs, and to improve service provision, we must (1) improve data collection needed for use of robust quality indicators, and (2) carry on testing and developing existing quality indicators.

Website : www.kcl.ac.uk/cicelysaunders @CSI_KCL