Decision-making and related outcomes of patients with complex care needs in primary care settings: a systematic literature review with a case-based qualitative synthesis

BACKGROUND: In primary care, patients increasingly face difficult decisions related to complex care needs (multimorbidity, polypharmacy, mental health issues, social vulnerability and structural barriers). There is a need for a pragmatic conceptual model to understand decisional needs among patients with complex care needs and outcomes related to decision. We aimed to identify types of decisional needs among patients with complex care needs, and decision-making configurations of conditions associated with decision outcomes. METHODS: We conducted a systematic mixed studies review. Two specialized librarians searched five bibliographic databases (Medline, Embase, PsycINFO, CINAHL and SSCI). The search strategy was conducted from inception to December 2017. A team of twenty crowd-reviewers selected empirical studies on: (1) patients with complex care needs; (2) decisional needs; (3) primary care. Two reviewers appraised the quality of included studies using the Mixed Methods Appraisal Tool. We conducted a 2-phase case-based qualitative synthesis framed by the Ottawa Decision Support Framework and Gregor’s explicative-predictive theory type. A decisional need case involved: (a) a decision (what), (b) concerning a patient with complex care needs with bio-psycho-social characteristics (who), (c) made independently or in partnership (how), (d) in a specific place and time (where/when), (e) with communication and coordination barriers or facilitators (why), and that (f) influenced actions taken, health or well-being, or decision quality (outcomes). RESULTS: We included 47 studies. Data sufficiency qualitative criterion was reached. We identified 69 cases (2997 participants across 13 countries) grouped into five types of decisional needs: ‘prioritization’ (n = 26), ‘use of services’ (n = 22), ‘prescription’ (n = 12), ‘behavior change’ (n = 4) and ‘institutionalization’ (n = 5). Many decisions were made between clinical encounters in situations of social vulnerability. Patterns of conditions associated with decision outcomes revealed four decision-making configurations: ‘well-managed’ (n = 13), ‘asymmetric encounters’ (n = 21), ‘self-management by default’ (n = 8), and ‘chaotic’ (n = 27). Shared decision-making was associated with positive outcomes. Negative outcomes were associated with independent decision-making. CONCLUSION: Our results could extend decision-making models in primary care settings and inform subsequent user-centered design of decision support tools for heterogenous patients with complex care needs. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12875-022-01879-5.