On 9 January, the Outcome Definition team of the international ROADMAP project published findings from a systematic literature review exercise in the journal Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring.
The review sought to find information on which outcomes could be considered important from the perspectives of people with mild cognitive impairment, people with Alzheimer’s disease (AD), their carers, but also health-professionals. As part of this exercise, partners from the team extracted statements and rankings from various studies and grouped them into overarching domains.
The domains included; clinical (memory, mental health), practical (ability to undertake activities of daily living, access to health information), and personal (desire for patient autonomy, maintenance of identity) encompassing “elicited” information for 32 outcomes of the condition.
In their conclusion, the authors underlined that although many outcomes were referred to as being in some context important, there were some infrequently assessed in clinical trials. In this context, the authors noted that such infrequently assessed outcomes like preservation of the patient’s personality or the accessibility of health services could be potentially captured by patient reported outcome and experience measures, which in turn could be used to describe and evaluate the effectiveness of treatments and quality of care.
Furthermore, they also underlined that they did not find references to outcomes that might be of importance for people with prodromal AD as well as for those who are have severe AD dementia, underlining the need for additional research.
The article has been published open access and can be read here: https://www.dadm.alzdem.com/article/S2352-8729(18)30085-X/fulltext