Identification of core outcomes for quality in routine care provided to people living with dementia in Australia: a multilevel modified Delphi consensus study

Abstract

Objective: To co-design a core outcome set with people living with dementia and other stakeholders that can be used to measure the quality of dementia care in home care and residential settings.

Design: Multilevel modified Delphi consensus study. A priori consensus threshold of 70% was used to include or exclude outcomes.

Setting: Routine dementia care provided through home care and residential aged care facilities in Australia.

Participants: A stakeholder panel comprising people living with dementia, formal and family/informal carers of people living with dementia, advocates, policy experts, allied-health professionals, nurses and professionals working in the aged care industry. Round 1 included 10 panellists; subsequent rounds extended the number of participants to 24.

Results: Seven outcome domains (Death, Physiological and clinical, Functional, Life impact, Resources, Adverse events and Education), encompassing 105 individual outcomes were considered by the panel over four rounds.The 105 outcomes were distilled to 16 outcomes identified as important in home care and 15 in residential aged care. In both settings, nine outcomes (Dignity, Advanced care planning, Meaningful activities, Feeling safe and secure, Emotional wellbeing, Quality of Life, Resource utilisation, Safety incidents and Dementia-specific qualifications for care staff) were considered important.Additionally, seven outcomes in the home care setting (Behavioural symptoms of dementia, Diagnosis of dementia, Hygiene, Importance of Relationships, Quality of carer and family lives, Dementia care navigation and Opportunities for unpaid carers) and six outcomes in the residential aged care setting (Neuropsychiatric symptoms of dementia, Pain, Hygiene and comfort, Medication safety, Staff carer morale and Adverse effects) were classified as important.

Conclusions: The outcomes identified during this modified Delphi consensus study provide a promising basis for the development of a meaningful, practical and measurable core outcome set that could be used in dementia care settings to improve the quality of routine care provided to people living with dementia.

Keywords: Decision Making; Dementia; Health Services for the Aged; Quality in health care.

Figure 1. Decision hierarchy for Delphi design. The Core Outcome Measures in Effectiveness Trials outcome taxonomy was used to structure outcomes and reduce decision fatigue for panellists when considering appropriate domains and outcomes for inclusion by importance.

Figure 2. Core Outcome Measures for Improving Care Delphi panel consensus flow diagram. A modified Delphi consensus process with interim adjustments to the consensus instrument based on panel discussions was selected through co-design as the best method to reach agreement on core outcome measures that are important and meaningful to people living with dementia. The process evolved over four rounds and produced a list of outcomes which will be workshopped for appropriate measures and inclusion in a core outcome set appropriate for use in routine care settings where people living with dementia receive services.