Table 1.
Summary of Outcome Consensus Recommendations
| Author, year of publication | Scope specification | Stakeholders involved | Consensus process | Outcomes recommended (including categories or domains, outcome and outcome measures concerning people living with dementia—if reported |
|---|---|---|---|---|
| Katona et al., 2007 | Care: Defining and measuring treatment benefit in dementia | 34 professionals and 2 carers | Two consensus group meetings | Cognition; behavioral and psychological symptoms; quality of life; global assessments; activities of daily living |
| Moniz-Cook et al., 2008 | Research: Psychosocial intervention research in dementia care | Up to 19 experts participated in the face-to-face consensus workshops. 131 professionals and 5 carers involved in web-based consultation. | Three face-to-face consensus workshops A web-based pan-European consultation (E-mail) A systematic literature review |
Mood (CSDD or GDS-12); Patient Quality of Life (QOL-AD, DQOL, EQ-5D); Patient ADL/IADL (Lawton PSMS-IADL); Patient behavior (NPI); Global patient measures (GBS, CIBIC-Plus) |
| EU Joint Programme Neurodegenerative Disease Working Group Report, 2015 | Research: Psychosocial intervention research in dementia care (update of Moniz-Cook et al., 2008) | Number of participants who participated in Workshop 1 is not reported. However, Workshop 2 involved 25 professionals. Attendees for Workshop 3 also unclear but assumed to be 25. Consultation with people living with dementia was piloted with five people. It is reported that after the pilot the consultation involved 25 people living with dementia and 18 carers. |
Three face-to-face consensus workshops Consultation with people living with dementia and carers Desk-based work |
Mood (CSDD, GDS-15, RAID); Quality of life (QOL-AD, DQOL; QUALIDEM; DEMQOL, QUALID); Health-related quality of life (EQ-5D); ADL/IADL (Lawton PSMS-IADL, Katz ADL, ADCS-ADL, BADSL, DAD) |
| ICHOM, 2016 | Care: All types and all stages of dementia | 19 professionals, 3 people living with dementia and 1 carer | Literature review Discussions with persons with dementia and patient represented groups Workshop (participant groups unclear) |
Symptoms, Functioning & Quality of Life: Neuropsychiatric (NPI); Cognitive (MOCA); social (includes community affairs and relationships, but no outcome measure recommended); daily living (BADSL); overall quality of life and well-being (QOL-AD & QWB-SA) Sustainability: Time to full-time care Safety: Falls Clinical status: Disease progression (CDR); hospital admissions; overall survival |
| Webster et al., 2017 | Care: Disease modification interventions for people living with mild to moderate dementia | 4 people living with dementia, 13 carers, and 1 PPI member were involved in the patient and public involvement consultation and E-mail consultation. 29 professionals participated in the consensus conference. |
Systematic review Patient and public involvement consultation (focus groups, follow-up E-mail consultation, and an unspecified number of interviews) Consensus conference |
Core: Cognition (MMSE OR ADAS-Cog); biological markers (MRI) Important, but not core: Neuropsychiatric symptoms (NPI); ADL (DAD); quality of life (DEMQOL); global functioning (CDR) |
| ROADMAP, 2018 | Care: To identify a priority set of real-world dementia outcomes, across disease spectrum, from preclinical to severe stages | 29 people living with dementia in patient and public involvement consultation. 25 people living with dementia, 70 carers, and 238 professionals participated in surveys. |
Systematic review Patient and public involvement consultation Three discrete stakeholder surveys (for people living with dementia, carers, and professionals) |
Functional ability and independence; patient quality of life; behavioral and neuropsychiatric symptoms; cognitive abilities |
Notes: Adapted from Reilly et al., 2020. We have summarized these according to the three domains present in the Core Outcome Set—Standards for Development (COS-STAD) recommendations: scope specification, stakeholders involved, and consensus process (Kirkham et al., 2017). ADAS-COG = Alzheimer’s Disease Assessment Scale—Cognitive subscale; ADL = Activities of Dailing Living; ADCS-ADL = Alzheimer’s Disease Cooperative Study—Activities of Daily Living; BADSL = Bristol Activity Daily Living Scale; CDR = Clinical Dementia Rating; CIBIC-Plus = Clinician Interview-Based Impression of Change plus caregiver input; CSDD = Cornell Scale for Depression in Dementia; DAD = Disability Assessment for Dementia; DEMQOL = Dementia Quality of Life Questionnaire; DQOL = Dementia Quality of Life Instrument; EQ-5D = EuroQol Five Dimension; GBS = Gottfries–Brane–Steen Rating Scale; GDS = Geriatric Depression Scale; MMSE = Mini-Mental State Examination; MOCA = Montreal Cognitive Assessment; MRI = Magnetic Resonance Imaging; NPI = Neuropsychiatric Inventory; PPI = Patient and Public Involvement; PSMS-IADL = Physical Self Maintenance—Instrumental Activities of Daily Living; QUALIDEM = Dementia Quality of Life Instrument; QOL-AD = Quality of life in Alzheimer’s Disease; QUALID = Quality of Life in Late-Stage Dementia; QWB-SA = Quality of Well-being Scale—Self Administered; RAID = Rating Anxiety in Dementia.