Delphi consensus on outcome measures for Alzheimer’s disease in clinical practice

Abstract Background Previous consensus initiatives on outcomes in Alzheimer’s disease (AD) have focused on clinical trials, may not be applicable to real‐world settings, and did not necessarily consider a comprehensive list or prioritize outcomes. The aim of this initiative was to achieve consensus among experts on priority outcomes and outcome measures for use in clinical practice when caring for patients with symptomatic AD. Method The Consensus Group consisted of 20 international voting members and a non‐voting Chair representing diverse specialities relevant to AD. A Delphi approach was used to generate shortlists of the most important outcomes and measures, and to develop consensus statements/recommendations ( Figure 1 ). Initial lists of outcomes/measures were obtained from the ROADMAP project (roadmap‐alzheimer.org), and panel members were given the opportunity to suggest additional ones. The threshold for consensus was predefined as ≥70% voting “agree” or “strongly agree”. Shortlists of outcomes and measures were ranked by priority, their relative importance for mild and moderate disease was indicated, and assessment frequency was recommended. The modified GRADE criteria were used to rate the strength of recommendations and quality of evidence. Result Strong consensus was readily reached on 37 statements/recommendations, grouped by ‘General Considerations’ (9) and nine domains (28) ( Table 1) , as well as on priority shortlists of outcomes and measures across the nine domains; an example of a priority shortlist for the domain ‘Cognitive abilities’ is shown in Table 2 . The level of evidence for most items was low; therefore, most statements are based on panelists’ expert opinion. Key recommendations include: patient quality of life (QoL) outcome assessments should measure what the person performs well in addition to deficits, and take into account the values of patients and/or caregivers; there is a need for a more comprehensive measure to assess language and communication; ‘functional ability & dependency’ should include an assessment of motor function. Conclusion This Delphi consensus highlights outcomes of highest importance in AD from a professional perspective and includes recommendations regarding the most appropriate measures for use in clinical practice. Further studies are needed to raise the strength of the recommendations and to explore patient/caregiver views.