JMIR Publications

ABSTRACT

Background:

Worldwide, there are an estimated 55 million people living with dementia (PwD), 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 PwD are given the support that helps them to manage these impacts and optimises their QoL. To do this, a more personalised 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 for PwD to complete PROMs routinely.

Objective:

To co-design and evaluate a novel multi-modal digital application to enable PwD to regularly self-report QoL PROMs. The research questions were: 1. What features, questions and modalities do PwD prefer when interacting with a digital application that enables them to self-report quality of life PROMs? 2. What are the design considerations and specifications for a digital application to enable PwD to self-report QoL data via PROMs?

Methods:

PwD, informal Carers (IC) and Health Care Professionals (HCP) participated in iterative co-design workshops and a final summative evaluation to co-design a multi modal digital application from initial concepts to functional prototype. Prototypes were presented using Cognitive Walkthroughs and Think Aloud protocols and data was analysed following framework analysis using Interaction Design and features voted for by participants using MoSCoW.

Results:

A total of 25 participants took part in the study (PwD=9, IC=4, HCP=12) developing and evaluating a total of 34 prototypes into a single final functional multi modal prototype that can collect PROMs using text, visuals, and voice.

Conclusions:

A functional prototype for a novel digital application was developed that enables PwD to regularly self-report QoL PROMs that was then successfully evaluated by PwD, IC, and HCP. The prototype was co-designed with direct involvement from PwD during every stage of development and this is one of the first studies to evaluate perceptions from key stakeholders (including PwD, IC, and HCP) regarding the use of ePROMs for dementia in routine care.