gms | German Medical Science

Objective: Patient-reported outcome measures (PROMs), one of them being psychosocial wellbeing, are gaining in importance in public policy and health care research. Even though many researchers use the term ‘psychosocial wellbeing’, a unified definition is lacking. To progress PROM research, this concept needs to be clarified. Aim of the present systematic review was therefore to establish what the research community means by the term ‘psychosocial wellbeing’ of people with dementia.

Methods: A systematic literature review was conducted in Pubmed, Embase, and Web of science using only the term ‘psychosocial’ and terms related to cognitive health and dementia in the search string. Inclusion and exclusion criteria according to PICO were, (P) people with dementia older than 60+ years (without special groups such as veterans or COVID patients), (I) any intervention or ordinary living situation, (C) any observational or intervention study but no case reports, and (O) a psychosocial outcome that expresses wellbeing. Of n=43,066 initial search hits, n=169 publications passed the title screening. Two blinded reviewers independently conducted the abstracts screening and subsequently the full-text screening. Non-consensus was discussed in team meetings until consensus was reached. A total of n=36 publication were included in the review.

Results: ‘Psychosocial wellbeing’ was explicitly investigated by n=4 publications. Other studies used alternative terminology, n=13 ‘psychosocial outcomes’, n=5 ‘psychosocial needs’, n=4 ‘psychosocial functioning’, ‘n=3’ psychosocial difficulties, n=2 ‘psychosocial problems’, and n=1 ‘psychosocial status’, ‘psychosocial health’, ‘psychosocial symptoms’, ‘psychosocial benefits’, and ‘psychosocial support’, respectively. Authors’ conceptualizations most commonly included emotional wellbeing, such as positive mood and the intensity of mental health symptoms (86%), and social health, such as social interaction and integration (67%). Less frequently, they included measures of general wellbeing/ quality of life (58%), behavioral symptoms (44%), functioning in daily life (28%), and cognitive functioning (25%).

Conclusion: The concept of psychosocial wellbeing as currently used in research predominantly incorporates emotional wellbeing and social health. Future studies investigating psychosocial wellbeing as an important PROM in dementia should operationalize it accordingly, without explicitly excluding the use of other concepts or outcomes.

The authors declare that they have no competing interests.

The authors declare that an ethics committee vote is not required.