An acceptability study of carer reported outcomes, caring for people living with dementia or mild cognitive impairment.

Dementia affects over 436,000 people in Australia with all of them requiring input at some stage from an informal carer. Currently there is no national data collection in Australia to identify the trajectory of quality of care offered to people living with dementia or mild cognitive impairment or their carers. In 2017 Monash University received three-years of funding to develop and test a pilot dementia registry, forming the Australian Dementia Network (ADNet) Pilot Registry. International registries do not currently collect carer reported outcomes (CROMs) although they are integral to the outcome of the person with dementia or mild cognitive impairment. Healthcare outcomes are increasingly demanding input from the people that receive healthcare services with an increasing emphasis on delivering effective and efficient person-centred care. This paper presents the methods and challenges of conducting an acceptability study with carers. Participants were involved in focus groups with a ‘think aloud’ component where carers completed the proposed tool while talking through their reactions, understanding and questions concurrently. This provided feedback to adjust the wording and acceptability of data collection. A content analysis identified new items required, consensus of questions to include. An exploratory analysis examined whether items differed across subgroups to increase acceptability across population groups. Learnings from this process will be presented alongside the final data collection tool. Involving patients and carers in the development of the formation of national registries is an innovative approach that links to the developing art of implementation research with patient and public involvement in healthcare.