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Table 2 Overview and characteristics of publications included (n = 67)

From: Advance care planning in dementia: recommendations for healthcare professionals

Systematic reviews and meta-analysis (n = 9)
First author (year of publication) Study type Number of publications included (n) Quality score ranging from 1 to 12* (number of items that could not be answered due to too little information in the paper)
 1 Dening (2011) Review 17 8 (4)
 2 Robinson (2012) Systematic review 4 7 (5)
 3 Seeber (2012) Review 43 6 (5)
 4 Van der Steen (2010) Systematic review 45 4 (8)
 5 Sampson (2010) Review (editorial)   2 (2)
 6 Goodman (2010) Integrative review 68 8 (3)
 7 De Boer (2010) Literature review Information not available 3 (7)
 8 Raymond (2014) Critical synthesis 8 6 (3)
 9 Van der Steen (2014) Systematic review 33 7 (4)
Other (n = 58)
First author (year of publication) Methods Setting (sample, n)
Quantitative and experimental research
 1 Detering (2010) Randomised controlled trial Medical inpatients aged 80 or more (n = 309)
 2 Vandervoort (2012) Cross-sectional retrospective survey Deceased residents with dementia in 345 nursing homes (n = 764)
 3 De Gendt (2010) Cross-sectional retrospective survey Nursing home administrators (n = 345)
 4 Benkendorf (1997) Prospective cohort study Patients > or = 19 years old with arrest of presumed cardiac cause, with locations at home or at a nursing home (n = 2348)
 5 De Gendt (2013) Cross-sectional retrospective survey Deceased nursing home residents (n = 1240)
 6 Sampson (2011) Exploratory randomised controlled trial Family caregivers of patients with severe dementia (n = 33; IG: n = 22; CG: n = 11)
 7 Brazil (2015) Cross-sectional survey General practitioners (n = 133)
 8 Grisso (1997) Quasi-experimental trial Acutely ill inpatients with a diagnosis of schizophrenia or schizoaffective disorder (IG: n = 40)
 9 Givens (2009) Prospective cohort study Nursing home residents with advanced dementia and their healthcare proxies (n = 223)
 10 Vandervoort (2013) Cross-sectional retrospective survey Deceased residents with dementia in 69 nursing homes (n = 198)
 11 Baile (2002) Questionnaires Oncologists (n = 167)
 12 Szafara (2012) Prospective cohort study Residents (n = 1044 US, n = 513 Netherlands)
 13 van der Steen (2012) Prospective cohort study Residents with advanced dementia (n = 94)
Qualitative research
 14 Garand (2011) Semi-structured interviews Persons (n = 127) with a diagnosis of MCI or early AD (n = 72) or moderate to severe AD (n = 55)
 15 de Boer (2012) Semi-structured interviews Individuals diagnosed with early-stage AD (n = 24)
 16 Poppe (2013) In-depth interviews Patients with memory problems or mild dementia (n = 2) and eight carers (n = 8) and staff members from a memory clinic and a community mental health team (n = 11)
 17 Chan (2011) Semi-structured interviews Nursing home residents (n = 42)
 18 Piers (2013) Semi-structured interviews Elderly patients with limited prognosis (n = 38)
 19 Ashton (2014) Interviews Family caregivers within a specialist dementia unit (n = 12)
 20 Levi (2010) Focus groups Older individuals (n = 23)
 21 Kim Suh (2011) Interviews Persons with AD (n = 188)
 22 Shanley (2009) Interviews Managers from residential aged care facilities (n = 41)
 23 Dening (2012) Nominal group study People with dementia (n = 6), carers (n = 5) and dyads of people with dementia and carers (n = 6) attending memory assessment services
 24 Dening (2012) Whole-systems qualitative study based on interviews and focus groups Nine carers of people with dementia (n = 9) and focus groups (n = 6) with health care professionals with mixed professions (n = 26) and individual interviews with health care professionals with mixed professions (n = 15)
 25 Hirschman (2006) Semi-structured interviews Family members of patients with advanced dementia (n = 30)
 26 Hirschman (2008) Semi-structured interviews Family members of patients with advanced dementia (n = 30)
 27 Dickinson (2013) Semi-structured interviews People with mild to moderate dementia (n = 17) and family carers (n = 29)
 28 Hoe (2007) Semi-structured interviews Care recipient and caregiver dyads (n = 191)
 29 Steeman (2007) Interview study Elderly people with probable mild dementia and their family members (n = 20)
 30 Zimmerman (2015) Interview study Family members of decedents from 118 nursing home and residential settings (n = 264)
 31 McMahan (2013) Semi-structured focus groups Focus groups with participants from a Veterans Affairs and county hospital and the community (n = 13)
 32 Steeman (2013) Longitudinal interview study Elderly persons with early-stage dementia (n = 17)
  Mixed methods research
 33 Silvester (2012) Survey (1) and review of existing ACP-related documentation (2) (1) staff of aged care facilities (n = 45); (2) aged care facilities (n = 12)
 34 Froggatt (2009) Survey (1) and semi-structured interviews (2) (1) care home managers (n = 213); (2) care home managers (n = 15)
 35 de Boer (2011) Survey (1) and semi-structured interviews (2) (1) elderly care physicians (n = 434); (2) physicians (n = 11) and relatives (n = 8)
 36 Van der steen (2014) Five-round Delphi study experts from 23 countries (n = 64)
Guidelines, reports, theses
 37 Van Mechelen (2014) Guideline   NA  
 38 Clayton (2007) Guideline   NA  
 39 WHO (2012) Report   NA  
 40 Harle (2008) Report   NA  
 41 Titler (2008) Guideline   NA  
 42 Vellinga (2006) Thesis   NA  
 43 Church (2007) Guideline   NA  
 44 Conroy (2009) Guideline   NA  
 45 American Medical Association (1999) Guideline   NA  
Opinion and reflection papers
 46 Harvey (2006) NA   NA  
 47 Lemmens (2012) NA   NA  
 48 Gillick (2012) NA   NA  
 49 Scott (2012) NA   NA  
 50 Berghmans (2001) NA   NA  
 51 Burlà (2014) NA   NA  
 52 Kim Suh (2006) NA   NA  
 53 Gillick (2004) NA   NA  
 54 Juthani-Mehta (2015) NA   NA  
 55 Mold (1991) NA   NA  
 56 Smith (2013) hypothetical case report (n = 2)   2  
Grey literature
 57 Van der steen (2011) Leaflet (Dutch)   NA  
 58 Keirse (2009) Leaflet (Dutch)   NA  
  1. NA Not Applicable, GP General Practitioner, IG Intervention Group, CG Control Group, AD Alzheimer’s Disease
  2. *Using the checklist that was developed by Cochrane Netherlands (http://netherlands.cochrane.org; only available in Dutch). It has been slightly adapted by the authors. It consists of 12 ‘yes – no - cannot answer/too little information in the paper’ questions, organised into three domains (validity, importance and applicability): 1) Was the search request adequately formulated? 2) Was the search performed adequately? 3) Was the selection procedure for the articles performed adequately? 4) Was the quality assessment performed adequately? 5) Is the description of how the data extraction was organised adequate? 6) Were the most important characteristics of the included research reported? 7) Was the meta-analysis carried out appropriately? 8) Was there statistical pooling? 9) Is the research valid? 10) Are the results adequately described? 11) Are the findings applicable in the region? 12) Is this applicable in daily practice? (translation by authors). The quality score is the number of times ‘yes’ was applied to the questions (1 ‘low quality’ - 12 ‘high quality’)