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

the Participatory Review Team

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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.

Original languageEnglish (US)
Article number279
JournalBMC Primary Care
Issue number1
StatePublished - Dec 2022

Bibliographical note

Funding Information:
PP (principal investigator) & FL (co- principal investigator). This work is funded by the Canadian Institutes for Health Research grant number 201630KRS-367087. This review was sponsored by the Quebec-SPOR SUPPORT Unit (Unité de Soutien SSA Québec). The funders had no role in study design, data set collection and analysis, decision to publish, or preparation of the manuscript.

Funding Information:
Participatory Review Team Representative: Quan Nha Hong4. Others Team members (alphabetical order): Marie-Claude Beaulieu,5Paula L. Bush,2Yves Couturier,6Reem El Sherif,2Justin Gagnon,7Anik Giguère,3Genevieve Gore,7Serge Goulet,5Roland Grad2, Vera Granikov,2Catherine Hudon,5Edeltraut Kröger,8Irina Kudrina,2Christine Loignon,5Marie-Therese Lussier,9Marie-Eve Poitras,5Rebekah Pratt,10Benoît Rihoux,11Nicolas Senn,12Isabelle Vedel,2Michel Wensing13.4School of Rehabilitation, Université de Montréal, Montreal, Canada.5Department of Family Medicine, Université de Sherbrooke, Sherbrooke, Canada.6School of Social Work, Université de Sherbrooke, Sherbrooke, Canada.7Department of Community Health Sciences, Université de Sherbrooke, Sherbrooke, Canada.8McGill Library, McGill University, Montreal, Canada.9Faculty of Pharmacy, Université Laval, Quebec City, Canada.10Department of Family Medicine and Department of Anesthesiology, McGill University, Montreal, Canada.11Department of Family and Emergency Medicine, Université de Montréal, Montreal, Canada.12Department of Family Medicine and Community Health, University of Minnesota, Minneapolis, United States of America.13Centre de Science Politique et de Politique Comparée, Université catholique de Louvain, Louvain-la-Neuve, Belgium.14Université de Lausanne, Switzerland.15Heidelberg University Hospital, Heidelberg, Germany.

Publisher Copyright:
© 2022, The Author(s).


  • Decisional needs
  • Interprofessional coordination
  • Multimorbidity
  • Patient-practitioner communication
  • Patients with complex care needs
  • Polypharmacy
  • Primary care
  • Shared decision-making
  • Vulnerable population


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