Digital Decision Aids to Support Decision-Making in Palliative and End-of-Life Dementia Care: Systematic Review and...

Making a care-related decision is a complex cognitive process. Patient decision aids could provide information on potential options about risks and benefits, incorporate individual values and preferences, and help people with dementia or their family carers make decisions about palliative and end-of-life care.

This systematic review aimed to critically evaluate and synthesize evidence on the effectiveness of digital decision aids to support decision-making in palliative and end-of-life care for patients with dementia, their family carers, or clinicians.

A systematic literature search in 4 health-related databases (PubMed, Embase, CINAHL, and Web of Science) was performed in September 2024. Articles were included if the study focused on the development and evaluation of a digital decision support tool on end-of-life dementia care, used an experimental design, and was available in full text in English. Studies using a nonexperimental design were excluded. The Cochrane Collaboration's Risk of Bias Tool Version 2.0 or the Risk of Bias in Non-randomized Studies of Interventions Version 2.0 was used to assess risk of bias. Narrative synthesis and meta-analyses were performed to comprehensively summarize the technologies and outcomes of the decision aids.

The literature search across datasets identified a total of 1274 records. With an additional 5 records from citation searching and reference reviewing, a total of 20 articles were included, with 10 studies using data from randomized controlled trials (RCTs) and 10 pretest-posttest pilot studies. Technologies of visual aids, videos, web pages, and telehealth were reported in the included studies to support decision-making for end-of-life dementia care. Most decision aids focused on the decision about the primary goal of care (life-prolonging care, limited care, and comfort care), except for 1 visual aid focusing on the decisions about feeding tube placement and drug treatment for dementia. Most decision aids engaged both patients and their family carers. Pilot studies examining feasibility showed that most participants found these decision aids relevant to their needs and easy to use, and were able to complete the intervention sessions. Meta-analyses of 4 RCTs showed that video decision aids were effective in increasing the proportion of participants opting for comfort care (odds ratio 3.81, 95% CI 1.92-7.56) but inconclusive for the proportion of documented do-not-hospitalize orders (odds ratio 1.60, 95% CI 0.70-3.67), compared to the control group.

Internet-based decision aids offer a feasible and acceptable approach to support the shared decision-making between patients, families, and clinicians. The included studies reported various outcome measures, including preferred goal of care, quality of palliative care, decision-making performance, and health care use. More large-scale RCTs are needed, and consistent outcome measures should be considered to evaluate the effects of end-of-life decision aids.

PROSPERO CRD42024621321; https://www.crd.york.ac.uk/PROSPERO/view/CRD42024621321.