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
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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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