Co-designing and evaluating a multimodal digital application to enable people with dementia to self-report quality of life patient-reported outcome measures : co-design study and summative evaluation

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Kernaghan, David and Egan, Kieren and Lennon, Marilyn and Maguire, Roma (2026) Co-designing and evaluating a multimodal digital application to enable people with dementia to self-report quality of life patient-reported outcome measures : co-design study and summative evaluation. Journal of Participatory Medicine, 18. e87565. ISSN 2152-7202 (https://doi.org/10.2196/87565)

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Abstract

Background: Worldwide, there are an estimated 55 million people living with dementia, with an estimated cost to society of US $1.3 trillion a year. These numbers are predicted to rise, with the dementia population doubling every 20 years, reaching an estimated 152 million by 2050. There is currently no cure for dementia, with the condition having a significant impact on people’s independence and quality of life (QoL). It is therefore vital that people living with dementia are given the support that helps them to manage these impacts and optimizes their QoL. To do this, a more personalized and detailed understanding of a patient’s daily life is needed. Patient-reported outcome measures (PROMs) have long been associated with significant benefits in other domains, though the use of PROMs in routine dementia care is lacking. Factors such as platform design, literacy, language proficiency, and physical and mental capability can all severely impact the ability of people living with dementia to complete PROMs routinely. Objective: This study aims to co-design and evaluate a novel multimodal digital application to enable people living with dementia to regularly self-report QoL PROMs. The research questions were (1) What features, questions, and modalities do people living with dementia prefer when interacting with a digital application that enables them to self-report QoL PROMs? (2) What are the design considerations and specifications for a digital application to enable people living with dementia to self-report QoL data via PROMs? Methods: People living with dementia, informal caregivers (ICs), and health care professionals (HCPs) participated in iterative co-design workshops and a final summative evaluation to co-design a multimodal digital application from initial concepts to a functional prototype. Prototypes were presented using cognitive walkthroughs and think-aloud protocols, and data were analyzed following framework analysis using interaction design and features voted for by participants using MoSCoW (Must Have, Should Have, Could Have, Won't Have). Results: A total of 25 participants took part in this study (people living with dementia=9, ICs=4, and HCPs=12) developing and evaluating a total of 34 prototypes into a single final functional multimodal prototype that can collect PROMs using text, visuals, and voice. Conclusions: A functional prototype for a novel digital application was developed that enables people living with dementia to regularly self-report QoL PROMs, which was then successfully evaluated by people living with dementia, ICs, and HCPs. The prototype was co-designed with direct involvement from people living with dementia during every stage of development, and this is one of the first studies to evaluate perceptions from key stakeholders (including people living with dementia, ICs, and HCPs) regarding the use of electronic patient-reported outcome measures for dementia in routine care.

ORCID iDs

Kernaghan, David ORCID logoORCID: https://orcid.org/0000-0003-0798-4885, Egan, Kieren ORCID logoORCID: https://orcid.org/0000-0002-1639-4281, Lennon, Marilyn ORCID logoORCID: https://orcid.org/0000-0003-3271-2400 and Maguire, Roma ORCID logoORCID: https://orcid.org/0000-0001-7935-3447;
CORE (COnnecting REpositories)