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Table 2 One hundred twenty-one outcomes extracted from qualitative data collection, across literature and their final status

From: What is important to people living with dementia?: the ‘long-list’ of outcome items in the development of a core outcome set for use in the evaluation of non-pharmacological community-based health and social care interventions

Source No. Initial grouping Outcome Final status
Qualitative data collection (1–79)   Living with dementia   
1   Acceptance of dementia In long-list
2   Access to meaningful activity and stimulation In long-list
3   Access to social contact and company In long-list
4   Being personally clean and comfortable In long-list
5   Choice in living arrangements Removed (not relevant)
6   Feeling financially secure In long-list
7   Feeling safe and secure In long-list
8   Having a sense of social integration In long-list
9   Living in a clean and comfortable environment Merged (4)
10   Maintaining a sense of self In long-list
11   Maintaining a sense of who you are, role/occupation In long-list
12   Self-esteem In long-list
13   Having a sense of purpose Merged (11)
14   Religion/spirituality Merged (2)
15   Basic Activities - being able to carry out basic self-care and basic tasks In long-list
16   Instrumental/more complex activities In long-list
  Maintaining cognition   
17   Word finding/language difficulties In long-list
18   Difficulties identifying/counting money/overspending In long-list
19   Deterioration (fears it will ‘spread’) In long-list
20   Memory In long-list as 2 items (short & long term memory)
21   Visuospatial abilities In long-list
22   Confusion/getting lost In long-list
23   Learning new things In long-list
  Physical functioning   
24   Physical function In long-list
25   Maintaining physical function Merged (27)
26   Falls In long-list
27   Keeping physically active In long-list
28   Balance In long-list
29   Co-morbidity In long-list
30   Mobility In long-list
  Maintaining relationships   
31   Importance of relationships with family and friends In long-list
32   Loss of relationships Merged (31)
33   Reaction of family and friends to diagnosis In long-list
  Maximising autonomy or independence   
34   Maintaining independence Became a domain - Independence
35   Being able to make choices/being involved in choices Became a domain - Independence
36   Maximising confidence Merged (12)
37   Minimising loneliness or isolation In long-list
  Living with others and the environment   
38   Access to appropriate services Removed (Intermediate/service/process outcome)
39   Information, i.e. having information about available services/support Removed (Intermediate/service/process outcome)
40   Being able to relate to other service users Merged (3)
41   Being treated as an individual Removed (Intermediate/service/process outcome)
42   Communication In long-list
43   Continuity of hobbies and care Merged (2)
44   Feeling valued and respected by others In long-list
45   Having a safe and secure home Merged (7)
46   Having a safe and secure neighbourhood In long-list
47   Having a say in services Merged (41)
48   Neighbourhood and public awareness of dementia Became a domain - Friendly Neighbourhood & Home
49   Service driven provision Removed (process outcome)
  Psychological and behavioural symptoms of dementia (BPSD)   
50   Frustration In long-list
51   Sleeping In long-list
52   Denial Merged (1)
53   Aggression/abusive behaviour In long-list
54   Agitation In long-list
55   Apathy In long-list
56   Suspicion/paranoia In long-list
57   Changes in personality Removed (present across BPSD outcomes)
58   Eating In long-list
59   Wandering In long-list
60   Inappropriate speech/disinhibition In long-list
61   Repeated questioning In long-list
62   Hallucinations/delusions In long-list
63   Anxiety In long-list
64   Embarrassment In long-list
65   Happy In long-list
66   Depression In long-list
  The experience of caring for a person with dementia   
67   The effect of caregiving on the carer Removed (not relevant - focus not on person living with dementia)
68   Carer reaction Removed (not relevant - focus not on person living with dementia)
69   Quality of life Became a domain - Quality of Life
70   Lived experience Removed (present across many outcomes)
71   Health and co-morbidity In long-list
72   End of life planning Removed (Intermediate/service/process outcome)
73   Cultural differences Merged (41)
74   Cost effectiveness of interventions Removed (Intermediate/service/process outcome)
75   Managing dementia Became a domain - ‘Self-Managing Dementia Symptoms’
76   Dementia progression Merged (19)
77   Medical events/falls Merged (26)
78   Maintaining everyday activities Merged (2, 15, 16)
79   Support Merged (2, 3, 31, 38)
Additional outcomes from literature (80–107) 80   Adverse events Removed (not relevant)
81   Aberrant behaviours other than wandering Merged (59)
82   Secretiveness In long-list
83   Hopelessness Merged (66)
84   Subjective memory/cognitive problems Merged (17–23)
85   General cognition Became a domain - ‘Self-Managing Dementia Symptoms’
86   Alertness In long-list
87   Attachment Merged (31–32)
88   Personal cost to person with dementia/family Removed (process outcome/cost)
89   Mortality Removed (not relevant)
90   Time to significant event Removed (Intermediate/service/process outcome)
91   Physical environment Merged (part of ‘Friendly Neighbourhoods & Home’ domain)
92   Medications (Type; Access; management) Merged (15, 16)
93   Medical health markers (cardiac rhythm, brain activation, brain volume, blood pressure) Merged (29, 71)
94   Number of contacts with health and social care professionals Removed (Intermediate/service/process outcome)
95   Health Behaviours Removed (Intermediate/service/process outcome)
96   Weight (also BMI) Merged (93)
97   Sleep In long-list
98   Quality of care process outcomes Removed (Intermediate/service/process outcome)
99   Health related quality of life Merged (Quality of Life domain and present across outcomes)
100   Enjoyment Merged (present across ‘Friendly Neighbourhoods & Home’ domain)
101   Self-efficacy Merged (12)
102   Wellbeing Removed (present across included outcomes)
103   Use of healthcare Removed (cost related, not individual outcome)
104   Use of social resources Removed (cost related, not individual outcome)
105   Use of other organisations Removed (cost related, not individual outcome)
106   Unmet needs general Removed (not a single outcome)
107   Satisfaction with/acceptability of intervention Removed (Intermediate/service/process outcome)
Additional outcomes from policy (108–120) 108   Timely diagnosis Removed (Intermediate/service/process outcome)
109   Stigma or discrimination Merged (44)
110   Sense of humour Merged (114)
111   Research Removed (not an outcome)
112   Reaction of others or wider community Merged (48)
113   Impact of diagnosis Merged (present across all included outcomes)
114   Having a laugh In long-list
115   Getting out of the house Merged (2, 34, 36)
116   Feeling like a burden In long-list
117   Faith religion or spirituality Merged (2)
118   Enjoyment Merged (100)
119   Empower or protection of rights Removed (Intermediate/service/process outcome)
120   Dementia friendly environments Merged (48)
Additional outcomes from key reviews and qualitative papers 121   Missing something Merged (2, 78)
Added during team workshops 122   Vision and hearing In long-list