Table 1
V1SAGES and PriCARE: Design and policy environment.
| SEGMENTATION | COORDINATION | ENGAGEMENT | SUCCESS MEASURES | POLICY-RELATED CONTEXT | |
|---|---|---|---|---|---|
| Description | Defining and applying rules to identify and recruit patients who are likely to benefit | An intake process to characterize needs, mechanisms for coordination across institutions and sectors such as health and social care | Support for shared decision-making, self-management and support for caregivers | How programs defined success, their level of maturity and any evaluation work conducted | Policy innovation to support integrated health and social care, and innovation in care delivery |
| Target group: frequent users of healthcare services with chronic diseases | Intake: Intake depends on the eligibility criteria. Then an initial assessment is conducted by the CM using a standard tool filled out during in-person consultation (home visit or consultation in the FMG). It includes a comprehensive history and assessment of health and social care needs | Patient engagement: Explicit culture of shared decision-making embedded in professional training and approach. Activities that support patient engagement include goal-setting with patients, developing individualized care plans, and patient partner involvement in the different phases of research | Maturity level: V1SAGES: Began in 2012 and the intervention is mature in terms of design, development and reflection on the related issues, yet the scale-up is still in its early stages PriCARE is indeed still at its early stages. The expansion targets the same population although eligibility criteria are slightly different | Financing: V1SAGES: At the initial set-up phase, the funding to carry out the CM intervention (mainly RNs’ salaries) came from research funds, then the FMGs took over with their operational funds. PriCARE: Nurses are paid through the primary care clinics’ operational funds | |
| Entry point: V1SAGES: A list of frequent users is generated by the regional health authority information system and submitted to the FMG professionals’ clinical judgement. Thirty patients per FMG are included. PriCARE: Each FMG identifies 30 patients with the most complex needs by searching administrative data and clinical records in addition to using their clinical judgement. Future orientation: A case-finding tool was developed. It enables early identification, in the ED, of patients with complex needs at risk of high use of healthcare services. Patients identified early would be referred to a CM program [33]. | Primary care providers: All patients have access to their GP who works closely with the nurse CM (who is responsible for coordinating care and services for them). Other health and social care providers are called upon to intervene when necessary. | Patient self-management: Self-management support for the patient and family is a main component of the intervention and CMs are trained in motivational interviewing and other methods aimed at promoting patient self-efficacy and empowerment. CMs are attentive to family and caregiver needs and provide support when possible. Nursing interventions with the patient’s family and caregivers are integrated in the primary care nursing curriculum. | Measures (current goals): The program goals are aligned with the Quadruple Aim: better health outcomes, better patient/caregiver experience, better provider experience, and lower costs. | Staffing: The CM intervention is innovative in that it redefines and creates new roles and responsibilities for nursing staff. Nurse CMs are employed by FMGs which promotes the sustainability of the intervention in the participating FMGs. V1SAGES: Nurses spend half of their time in CM, and the remaining half in other primary care duties. PriCARE: Nurses dedicate one day per week to CM activities. | |
| Eligibility: V1SAGES: Patients with 3 or more ED visits, hospitalizations, or both, in the previous 12 months. Patients aged 18 to 80 years who have at least one chronic disease. Patients with serious cognitive problems were excluded. PriCARE: Patients living with at least one chronic condition; who are frequent ED users (as defined by ≥4 ED visits or hospitalizations in the previous year); and a score ≥17 on the INTERMED-Self-Assessment Questionnaire evaluating complex healthcare needs. Development of eligibility criteria was driven by quality issues. | Integration: Involves a wide range of health and social care services, community organizations, and specialized clinics and services, depending on each patient’s complex needs. The CM communicates directly with the targeted professionals. Meetings (virtual or in-person) are scheduled to establish and review the ISP with the patient. | Caregiver engagement: This is a clear component of the intervention. With the patient’s consent, the caregiver is involved in the development of the ISP. The caregiver may stand in for the patient at any point during the intervention. | Data collection: No routine data are collected; however, many studies were conducted or are in progress. | Governance: V1SAGES: A CM committee was formed with the aim of linking CMs working in hospitals with those working in FMGs. The committee is officially part of the governance structure of the IUHSSC. Also, FMG and IUHSSC managers meet regularly to review CM performance and other issues. CM communities of practice (mentored by an expert) were also formed to share knowledge, discuss potential difficulties and proceed with necessary adaptations or changes to the intervention. PriCARE: Patient and family partner communities of practice were formed in addition to those of the CMs. Stakeholders who collaborate with the academic research team include a patient partner, who plays a central role as an “external change agent”, the two types of communities of practice, managers and GPs, and decision-makers. Each stakeholder is involved according to their interest, availability and expertise. | |
| Transitions: Other than the ISP, there are no structured protocols for care transitions across sectors or care settings. The CM facilitates patient transition through direct communication with services. | Evaluation: Several formal research studies were conducted to evaluate the intervention, its implementation and outcomes (see description of the program). | Health and social care data sharing structure: There is no common data sharing structure. Innovation is related to the ISP, which constitutes the main communication tool between providers, and to the role of CMs in establishing communication channels with providers and organizations, including a communication plan for emergencies. | |||
| Information sharing: Only co-located health and social care professionals share an EHR. There is no operational common data platform for sharing data across providers and settings. Information transfer occurs through electronic and paper referrals. | Care delivery innovation: To our knowledge, it is the only intervention in Quebec developing a CM role for primary care nurses. Patients are involved in every decision throughout the intervention. PriCARE: Patients are also engaged in every phase of the research. |
[i] Legend: CM: Case manager; ED: Emergency department; EHR: Electronic health record; GP: General practitioner also known as family physician; ISP: Individualized service plan; IT: Information technology; IUHSSC: Integrated university health and social services centres (resulted from merging neighbouring health and social services centres with all the other public healthcare organizations, such as youth centres, rehabilitation centres and university teaching hospitals under a single governing body per regional territory); MD: Medical doctor; RN: Registered nurses; SW: Social worker.
Table 2
Quebec Alzheimer Plan: Design and policy environment.
| SEGMENTATION | COORDINATION | ENGAGEMENT | SUCCESS MEASURES | POLICY-RELATED CONTEXT | |
|---|---|---|---|---|---|
| Description | Defining and applying rules to identify and recruit patients who are likely to benefit | An intake process to characterize needs, mechanisms for coordination across institutions and sectors such as health and social care | Support for shared decision-making, self-management and support for caregivers | How programs defined success, their level of maturity and any evaluation work conducted | Policy innovation to support integrated health and social care, and innovation in care delivery |
| Target group: Patients with major neurocognitive disorders (Alzheimer’s disease and other NCD) and their caregivers. | Intake: In case of clinical suspicion, a comprehensive assessment of mental and cognitive states and depression is conducted by the GP-RN duo, using validated tools such as MMSE, MoCA and GDS-15 or GDS-5. RNs also assess the patient’s functional ability (ADL, IADL) and their health and social care needs. A diagnosis is made based on the disease history, cognitive and functional decline results. | Patient engagement: The QAP promotes the autonomy, independence and participation of patients and caregivers. In the clinical context, patients’ priorities are assessed and their choices are taken into consideration for the decision-making process. | Maturity: The QAP is currently well established and mature after its second implementation phase. This phase was rather a progressive development of best practices, on a provincial level, through access to an implementation guide, training and a change management strategy. | Financing for model: Public funding. For the pilot phase (2014–2016), an annual budget of five million dollars was allocated by the MSSS to implement the QAP in 19 selected projects. Each project received $250,000 per year (over 2 years). A recurring budget ($225,000 per regional health authority) was allocated afterwards to support the deployment of best clinical and organizational practices in all regional health authorities throughout Phase 2. Sustainability of the QAP is ensured through recurrent funding (dedicated to staff professional development) and the allocation of regional nurses mandated to train staff and update training content. It should be noted that the allocated amount has remained the same but is now spread over many more FMGs. | |
| Entry points: Self-referral (patients and families) or by professionals who suspect a neurocognitive disorder. Although systematic screening is not recommended, a vigilance zone is applied for those at high risk (65 years old and above with risk factors; 75 years old and above who renew their driving licence). | Primary care providers: A GP-nurse partnership with the patient and their caregiver is established. These two primary care providers are responsible for early diagnosis, treatment (if needed), management and referral of patients to relevant providers and services, especially referral to cognition clinics for complex cases. Other care providers (social workers, occupational therapists, pharmacists, special education technician) were added to the existing teams and located either in primary or specialized care or shared by the two levels of care. Unfortunately, little effort was put into coordination with regional health authority programs aimed at supporting the autonomy of the older people. | Patient self-management: This is sometimes difficult to operationalize given their functional and cognitive status. Patient education, support and counselling are provided by nurses during regular follow-up visits. | Measures (current goals): Although the plan’s recommendations cover the continuum of care, the implementation strategy promotes building the capacity of FMGs to ensure the early diagnosis and overall monitoring of people with Alzheimer’s and their caregivers in the community. | Staffing model: The pilot projects resulted in the addition of at least one nurse per project, eight social workers, a few occupational therapists, a pharmacist and a special education technician. These professional resources were added either to the IHSSC, to the FMGs, or shared between the FMGs and the specialized organizations. Only a few were assigned to specialized organizations. Part of the budget of the deployment phase was used to train and provide equipment to healthcare providers. The RNs kept their initial caseload of patients and were trained to pay particular attention to patients who present signs of AD or were at high risk. | |
| Integration: Available personalized and coordinated services include (to varying degrees) primary care in the community, psychosocial resources such as Alzheimer Society support centres, home care programs, specialized care such as specialized memory clinics and specialized teams dedicated to behavioural and psychological symptoms of dementia. | Caregiver engagement: This is a major component of the QAP as caregivers are considered valuable partners. For instance, they are actively involved in monitoring changes in the patient’s cognitive and functional status. Caregivers are also entitled to psychoeducational and support services to help them cope with the patient’s condition, better navigate the health system and the community network, and establish an end-of-life plan. When deemed necessary, RNs proceed with an assessment of the caregiver’s burden. Patients and caregivers were not involved in the co-design of the first phase of the QAP. However, Phase 2 involved patients’ and caregivers’ representatives (Alzheimer Society) in the development plan. | Data collection: This was done to varying degrees in the FMGs. The recommended indicators were difficult to collect or perceived as irrelevant by the FMGs. They prioritized staff training in assessment and identification of patients with AD, and teamwork. Therefore, they collected process indicators on these two variables (i.e number of staff trained). There were also difficulties with collecting harmonized data across all FMGs. Finally, data collection was assigned to RNs. Their overloaded schedule and turnover impeded the process. | Governance structure: Shared governance model combining top-down components and a bottom-up approach. National priorities were established by the MSSS (who set up a committee including partners and researchers), and professionals were asked to design their local projects according to their local realities while still aiming to achieve the objectives identified by the MSSS. Professionals received the support of designated project managers for coordination in terms of governance and change management. | ||
| Transitions: The presence and use of a referral process and a structured protocol for care transitions across sectors or care settings varied between settings. Overall, RNs worked as patient navigators and advisors. They linked patients and their caregivers with home care, community care and specialized services but played a minimal role in optimizing transitions in the event of hospitalization. | Evaluation: A continuous evaluative study was set up during project implementation to enable monitoring and progressive adjustment of service structures based on the challenges posed by their implementation, and to support their transferability to other contexts. Evaluation of Phase 1 focused on the impact of the QAP on the quality of services provided by FMGs. Evaluation of Phase 2 focused on monitoring change management. | Health and social care data sharing: Although it was one of the recommendations, no innovative approach for sharing data across providers and settings was established. This was mainly due to the lack of interoperability with the existing EHR. | |||
| Information sharing: A common EHR allows information sharing between healthcare professionals within an FMG. There is no operational common data platform for sharing data across providers and settings. Communication is considered suboptimal by providers. Channels mainly include referral letters and reports. | Care delivery innovation: The 19 pilot projects all presented innovations in the health and social services network, the main objectives of which are to diagnose AD and other major NCD more quickly in primary care, as well as to improve follow-up, in the community (as opposed to the specialized care level), with people with Alzheimer’s and their caregivers. Decentralization of clinical governance enabled the development of a broad diversity of innovative projects. |
[i] AD: Alzheimer’s disease; ADL: activities of daily living; IADL: instrumental activities of daily living; GP: General practitioner also known as family physician; MMSE: Mini Mental State Examination-Folstein; MoCA: Montreal Cognitive Assessment; GDS-15 and GDS-5: Geriatric Depression Scale; MSSS: Ministry of Health and Social Services. IHSSC: Integrated health and social services centres; IUHSSC: Integrated university health and social services centres; NCD: Neurocognitive disorders.
Table 3
Nursing care coordination activities across cases.
| V1SAGES AND PRICARE | QUEBEC ALZHEIMER PLAN | |
|---|---|---|
| Segmentation: Care coordinators play an essential role in both programs for the identification of eligible patients with complex health and social care needs | Identify patients who could benefit from the CM intervention: | Identify patients who could benefit from a cognitive evaluation: |
Case managers:
| Patient navigators:
| |
| Coordination: | Assess comprehensive patient and family needs and goals: | Assess cognitive and functional status: |
Assessment (and follow-up) could be performed during home visits if necessary. Case managers:
| With the patient’s consent, an initial assessment is performed in the presence of a caregiver. Patient navigators:
| |
| Develop an individualized service plan (ISP): | Develop a nursing therapeutic plan (NTP): | |
| The nursing therapeutic plan (NTP) records the nursing plan and instructions for clinical monitoring and care, and reports on the evolution of the patient’s priority problems and needs. Patient navigators share their NTP with other healthcare professionals. | |
| Follow-up: | Follow-up: | |
| Once the diagnosis has been established and announced by the GP (in the presence of the RN when possible), patient navigators:
| |
| ||
| Coordinate care and services: | Coordinate care and services: | |
In addition to activities included in the planning, development and follow-up of the ISP, case managers:
|
| |
| Engagement: | Provide educational self-management support for patients and families: | Provide educational self-management support for patients and families: |
This component is considered an ongoing and transversal process to be performed as needed throughout the intervention. Case managers:
| This component aims to maintain patient autonomy for the longest possible time and slow the progression of the AD:
| |
| ||
| Develop a relational continuity of care: | Develop a relational continuity of care: | |
|
| |
| Success measures |
|
|
[i] Key sources (in addition to interviews with experts): MSSS,2019 [52]; MSSS, 2014 [53]; Danish et al., 2020 ([31]; Nicol-Clavet, 2017 [54].
Legend: ADL: activities of daily living; CM: Case manager; CVA: Cerebral vascular accident; ED: Emergency department; EHR: Electronic health record; GP: General practitioner also known as family physician; IADL: instrumental activities of daily living; MSSS: Ministry of Health and Social Services; TIA: Transient ischemic attack.