Assessing Care Models Implemented in Primary Health Care for Persons with Neurocognitive Disorders
Various care models have been developed across Canada to meet the care needs and support the quality of life of the (ever-growing) number of people with Alzheimer’s disease and related dementias (AD):
- Quebec: The Quebec Alzheimer Plan is currently in its second phase of implementation (First phase: 42 Family Medicine Groups, Second phase: all Family Medicine Groups)
- Ontario: Initiatives developed from individual Family Health Teams (FHTs) and Local Health Integration Networks
- New Brunswick: Initiatives developed at the clinical level
While the models are different in terms of where they occur and how they came to be, they share the same overarching goal: Timely, patient-centered, comprehensive, and continuous collaborative care for older persons with dementia.
Despite the fact that these models have shown uptake, feasibility, and are valuable to clinicians and patients alike, no systematic evaluation has been conducted. This is a problem because, in order for successful care models to spread across Canada, organizations and groups need to know the underlying conditions for success.
Filling this Gap: Research Objectives and Methods
The ROSA research program has three parts (convergent mixed methods research design), outlined below.
1) What is the relationship between key factors and outcomes of successful management of care models?
Quantitative cross-sectional study.
This study is taking place in 28 primary care sites across Quebec, Ontario, and New Brunswick. We used questionnaires(1) to understand clinicians’ knowledge, attitudes, and practices about the initiatives and changes put in place, as well as organizational elements of the clinic to come up with a list of possible factors. We then reviewed anonymous medical records(2) and collected information about the quality of dementia care and dementia diagnosis rate from the patient’s point of view. Together, this information was used to make a list of key factors required for quality AD care. This list was then shared with appropriate decision makers to help improve dementia care models in the future (see objective 4).
(1) Clinician Questionnaires: Many factors can influence the impact of an intervention on improving the quality of care for patients with dementia, namely the attitudes, knowledge, and practices of clinicians regarding the disease and the intervention. We built, with the help of a committee of research experts and numerous clinicians across Quebec, Ontario and New Brunswick, two questionnaires that were further validated with factorial analyses. The first questionnaire has 100 questions measuring the attitudes, knowledge, and practices of physicians and nurse practitioners, while the second has 98 questions measuring attitudes, knowledge, and practices of nurses and other healthcare professionals. The questionnaires were distributed to all clinicians involved in all the sites and used these scores in our final analyses to extract what are the best practices associated with the best quality of care for dementia patients.
(2) Patient Questionnaires: We measured the quality of care of patients with dementia by collecting data directly from the patients’ file, using a 10-item score validated by our team. These items include: have the patients’ cognition, functional status, psychiatric symptoms and behaviours and weight been evaluated at least once during the study period? Has their medication and their side effects been revised? If they are driving, has their ability to continue driving been evaluated? Similarly, has their caregiver’s burden been evaluated? Have homecare services, or Alzheimer society support been discussed?
2) Describe the models, and identify the key elements clinics need for successful implementation.
Descriptive and exploratory qualitative multiple case study.
This study takes place in 22 of the 28 sites from the first study: 10 sites each from Quebec and Ontario, and 2 sites from New Brunswick. We are studying key documents such as job descriptions, annual reports and organizational charts and policies from each site. We are also holding semi-structured interviews with the following people from each site: one manager or administrator, three clinicians (doctor, nurse, other healthcare worker), and one patient with dementia. Finally, we are interviewing one high-level representative from the Ministry of Health in each province. These interviews will help us understand the conditions and context of the qualitative results (see objective 1), as well as reveal adaptive strategies used by local clinics to overcome any difficulties they may have encountered.
3) Describe trends in quality of care and health service use of people who are newly-diagnosed with AD.
For this, we are using province-wide health administrative data to describe and compare population-based trends over time. We developed indicators to measure primary care performance and health service use for persons with AD in Quebec and Ontario using the input of stakeholders within the CCNA.
In Ontario, we will use novel statistical models to study whether new team-based primary care clinics, called Family Health Teams, have led to improve care for persons with AD.
In Quebec, we will also measure the impact of high continuity of primary care on total and inappropriate acute hospital use in patients with dementia in Quebec.
4) Share study results quickly with relevant partners
Participatory integrated knowledge transfer and exchange strategy. Many individuals are affected by this research: patients and their families, caregivers, clinicians, managers, policy and decision makers. We have involved these stakeholders in the planning and execution of the project, and it is very important that we share the results of the research with them as quickly as possible to spread, set-up, and maintain these care models across Canada. This ongoing element of the program involves meetings and other dissemination activities with stakeholders in Quebec, Ontario, New Brunswick, the rest of Canada and internationally.
By identifying the key elements for success in the studied models, we are:
- Making improvements to the access, quality, and continuity of care for people with AD.
- Improving the knowledge and ability of primary care clinicians to care for people with AD.
- Further exploring specialist collaboration in AD care.
- Looking at specific strategies for scaling-up across Canada.
View a map of ROSA’s various study sites on our Clinic Map
Preliminary Results, News and Program Updates
View the executive summary from our latest report to the Ministère du Santé et Services Sociaux du Québec (Quebec Ministry of Health).
Recognizing the importance of developing and implementing an effective strategy to address this challenge, the Minister of Health of Canada, through the Public Health Agency of Canada, asked the Canadian Academy of Health Sciences (CAHS) to provide an evidence-informed and authoritative assessment on the state of knowledge to help advance federal priorities under the National Strategy for Alzheimer’s Disease and Other Dementias Act.
To address the charge, the CAHS assembled a multidisciplinary, multi-sectoral panel of six experts with a range of expertise, experience, and demonstrated leadership in this domain, including several members of the ROSA team. See more here
Publication List and Media
Read a short opinion piece published by our team in The Gazette on the need for multidisciplinary teams in treating AD
Watch a short video of Claire Godard-Sebillotte’s (PhD candidate) research
Read a featured post on Nadia Sourial’s (PhD candidate) research
View our publication index
Quebec, Ontario and New Brunswick Stakeholder Meeting
Stakeholders from Quebec, Ontario and New Brunswick, including decision-makers, managers, researchers, and patient and caregiver representatives, were invited to a meeting in Montreal, Canada on June 16th 2017. The focus of this meeting was on the initial and ongoing results from the evaluation of the implementation of the first phase of the Quebec Alzheimer Plan. Future stakeholder meetings, with the next planned for Fall 2018, will include results from the studied initiatives in Ontario and New Brunswick.
Three major themes led the discussion:
- Implementation Strategy
- Interdisciplinary care (within primary care), and the role of specialty care (memory clinics)
- Coordination with community organizations, caregivers and homecare services
View a summary of the day’s discussions. For a short opinion piece published on the outcomes of this meeting, see our ‘Media’ section.
ROSA International Council Roundtable
During the 21st IAGG World Congress in San Francisco, the ROSA team organized a meeting with our research colleagues from around the world working in evaluation and implementation research of Alzheimer’s plans and initiatives. We were able to catch up on the state of similar research programs internationally, and discuss common barriers and further questions for study that face the field. This international council will continue to exchange information and discuss on these topics, and will aim to culminate in a large international workshop in Canada in 2019.
Are you interested in becoming a part of the International Council?
The council meets annually, often at international conferences, to disseminate and share the latest results and personal experiences working in this field of evaluation and implementation research. For more information, please contact our knowledge translation director, Rachel Simmons at rachel.simmons [at] mcgill.ca!