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Decisional needs assessment of patients with complex care needs in primary care: a participatory systematic mixed studies review protocol
  1. Mathieu Bujold1,
  2. Pierre Pluye1,
  3. France Légaré2,
  4. Jeannie Haggerty1,
  5. Genevieve C Gore3,
  6. Reem El Sherif1,
  7. Marie-Ève Poitras2,
  8. Marie-Claude Beaulieu4,
  9. Marie-Dominique Beaulieu5,
  10. Paula L Bush1,
  11. Yves Couturier6,
  12. Béatrice Débarges7,
  13. Justin Gagnon1,
  14. Anik Giguère2,
  15. Roland Grad1,
  16. Vera Granikov1,
  17. Serge Goulet4,
  18. Catherine Hudon4,
  19. Bernardo Kremer8,
  20. Edeltraut Kröger9,
  21. Irina Kudrina1,
  22. Bertrand Lebouché1,
  23. Christine Loignon4,
  24. Marie-Thérèse Lussier5,
  25. Cristiano Martello1,
  26. Quynh Nguyen1,
  27. Rebekah Pratt10,
  28. Benoit Rihoux11,
  29. Ellen Rosenberg1,
  30. Isabelle Samson2,
  31. Nicolas Senn12,
  32. David Li Tang1,
  33. Masashi Tsujimoto13,
  34. Isabelle Vedel1,
  35. Bruno Ventelou14,
  36. Michel Wensing15
  37. The Participatory Review Team
    1. 1Department of Family Medicine, McGill University, Montréal, Québec, Canada
    2. 2Department of Family Medicine and Emergency Medicine, Université Laval, Montréal, Québec, Canada
    3. 3McGill Library, McGill University, Montréal, Québec, Canada
    4. 4Department of Family Medicine, Université de Sherbrooke, Canada
    5. 5Family and Emergency Medicine, Université de Montréal, Canada
    6. 6École de travail social, Université de Sherbrooke, Canada
    7. 7Beatitude Patient engagement in research, Sherbrooke, Canada
    8. 8Jewish General Hospital, Montréal, Québec, Canada
    9. 9Faculty of Pharmacy, Université Laval, Montréal, Québec, Canada
    10. 10Department of Family Medicine and Community Health, University of Minnesota, Minneapolis, United States
    11. 11Centre de Science Politique et de Politique Comparée, Université catholique de Louvain, Belgium
    12. 12Université de Lausanne, Switzerland
    13. 13Japan National Center for Geriatrics & Gerontology, Obu, Japan
    14. 14Université d’Aix-Marseille, France
    15. 15Heidelberg University Hospital, Germany
    1. Correspondence to Dr Mathieu Bujold; mathieu.bujold{at}


    Introduction Patients with complex care needs (PCCNs) often suffer from combinations of multiple chronic conditions, mental health problems, drug interactions and social vulnerability, which can lead to healthcare services overuse, underuse or misuse. Typically, PCCNs face interactional issues and unmet decisional needs regarding possible options in a cascade of interrelated decisions involving different stakeholders (themselves, their families, their caregivers, their healthcare practitioners). Gaps in knowledge, values clarification and social support in situations where options need to be deliberated hamper effective decision support interventions. This review aims to (1) assess decisional needs of PCCNs from the perspective of stakeholders, (2) build a taxonomy of these decisional needs and (3) prioritise decisional needs with knowledge users (clinicians, patients and managers).

    Methods and analysis This review will be based on the interprofessional shared decision making (IP-SDM) model and the Ottawa Decision Support Framework. Applying a participatory research approach, we will identify potentially relevant studies through a comprehensive literature search; select relevant ones using eligibility criteria inspired from our previous scoping review on PCCNs; appraise quality using the Mixed Methods Appraisal Tool; conduct a three-step synthesis (sequential exploratory mixed methods design) to build taxonomy of key decisional needs; and integrate these results with those of a parallel PCCNs’ qualitative decisional need assessment (semistructured interviews and focus group with stakeholders).

    Ethics and dissemination This systematic review, together with the qualitative study (approved by the Centre Intégré Universitaire de Santé et Service Sociaux du Saguenay-Lac-Saint-Jean ethical committee), will produce a working taxonomy of key decisional needs (ontological contribution), to inform the subsequent user-centred design of a support tool for addressing PCCNs’ decisional needs (practical contribution). We will adapt the IP-SDM model, normally dealing with a single decision, for PCCNs who experience cascade of decisions involving different stakeholders (theoretical contribution). Knowledge users will facilitate dissemination of the results in the Canadian primary care network.

    PROSPERO registration number CRD42015020558.

    • patients with complex care needs
    • shared decision making
    • interprofessional care
    • primary care

    This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See:

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    • Contributors PP, FL and MB conceived and designed the review with input from all team members. MB drafted the manuscript. All authors (MB, PP, FL, JH, GG, RES, M-EP, M-CB, M-DB, PLB, YC, BD, JG, AG, RG, VG, SG, CH, BK, EK, IK, BL, CL, M-TL, CM, QN, RP, BR, ER, IS, NS, DT, MT, IV, BV, MW) read, critically revised and approved the final manuscript and will participate to workshops. Executive task force are (MB, PP, RES). Team members are (1) knowledge users (JH, M-CB, M-DB, BD, BK, IK, M-TL, CM, ER, IS, NS, RG, SG); (2) co-researchers (FL, GG, M-EP, PLB, YC, JG, AG, VG, CH, EK, BL, CL, QN, RP, BR, DT, MT, IV, BV, MW, BPL, CY, GA); (3) international experts (RB, RP, NS, MT, BV, MW). The executive team is doing the bulk of the work. GG participated intensively in the systematic search strategy planning and operationalisation. The authors of this systematic review who are also involved in the qualitative decisional need assessment study are M-EP, FL (co-leaders), MB, CH, PP (co-researchers) and BD, M-DB (knowledge users).

    • Funding This work is funded by the Canadian Institutes for Health Research (CIHR) grant number 201630KRS-367087. CIHR had no role in the development of this protocol.

    • Competing interests None declared.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Collaborators Magali Bigras and Alain Boulet (Centre de santé et de services sociaux de Gatineau, Canada); Lynn R McLauchlin (St. Mary’s Hospital Center, Montreal, Canada); Silvia Duong (Jewish General Hospital, Montreal, Canada); and Fanny Hersson (Department of Family Medicine, McGill University, Canada).

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