Reeve, Emily, Chenoweth, Lynn, Sawan, Mouna, Nguyen, Tuan Anh, Kalisch Ellett, Lisa, Gilmartin-Thomas, Julia ORCID: 0000-0002-1783-0161, Tan, E, Sluggett, Janet K, Quirke, Lyntara S, Tran, Kham, Ailabouni, Nagham, Cowan, Katherine, Sinclair, Ron, De La Perrelle, Lenore, Deimel, Judy, To, Josephine, Daly, Stephanie, Whitehead, Craig and Hilmer, Sarah N (2023) Consumer and Healthcare Professional Led Priority Setting for Quality Use of Medicines in People with Dementia: Gathering Unanswered Research Questions. Journal of Alzheimer's Disease, 91 (3). pp. 933-960. ISSN 1387-2877

Abstract

Background: Historically, research questions have been posed by the pharmaceutical industry or researchers, with little involvement of consumers and healthcare professionals. Objective: To determine what questions about medicine use are important to people living with dementia and their care team and whether they have been previously answered by research. Methods: The James Lind Alliance Priority Setting Partnership process was followed. A national Australian qualitative survey on medicine use in people living with dementia was conducted with consumers (people living with dementia and their carers including family, and friends) and healthcare professionals. Survey findings were supplemented with key informant interviews and relevant published documents (identified by the research team). Conventional content analysis was used to generate summary questions. Finally, evidence checking was conducted to determine if the summary questions were 'unanswered'. Results: A total of 545 questions were submitted by 228 survey participants (151 consumers and 77 healthcare professionals). Eight interviews were conducted with key informants and four relevant published documents were identified and reviewed. Overall, analysis resulted in 68 research questions, grouped into 13 themes. Themes with the greatest number of questions were related to co-morbidities, adverse drug reactions, treatment of dementia, and polypharmacy. Evidence checking resulted in 67 unanswered questions. Conclusion: A wide variety of unanswered research questions were identified. Addressing unanswered research questions identified by consumers and healthcare professionals through this process will ensure that areas of priority are targeted in future research to achieve optimal health outcomes through quality use of medicines.

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