Implementing Patient Navigation for Individuals Living with Dementia: A Scoping Review Protocol
Creators: name: Kokorelias, Kristina
name: Hitzig, Sander
Publisher: name: Open Science Framework
Year: 2022
Subjects: subject: Medicine and Health Sciences

description: Introduction As the population ages, policymakers struggle to cope with the increasing demands placed on health and social care [1]. Of particular concern is the growing prevalence of dementia as the incidence rate of increases dramatically after age 65 [2]. Dementia refers to a group of symptoms affecting memory and cognition, which may affect a person’s ability to control their emotions and where their personality may change [3]. Persons living with dementia (PWD) and their family caregivers often rely on the health and social care system to meet their support needs over the disease and caregiving trajectory [4]. Thus, PWS and their family caregivers are often required to navigate through multiple sectors of a fragmented health and social care systems from the point of diagnosis to long-term care placement [4, 5]. Seminal research has found that in comparison to older adults without dementia, those living with dementia experience more transitions and have many unique barriers while navigating the health care system [6]. These unique barriers include a lack of knowledge about dementia or caregiving and stigmatic beliefs about dementia [5, 7]. Improving the access, the coordination and continuity of care for individuals with dementia moving between health and social care systems, has the potential to improve care transitions for PWD and their family caregivers [8-10]. World-wide patient navigation is increasingly being used to improve health and social care delivery and transitions in care[11]. Patient navigation is defined as offering information, support, and assistance with accessing and coordinating services[12] to patients and their families across the disease trajectory. Numerous studies have shown the benefit of patient navigation for older adults with chronic conditions, including dementia [11, 13, 14]. Although improving system navigation for PWD and their caregivers has been identified as a policy and research priority for over a decade[15], little is known about how to deliver patient navigation in the context of dementia. A review was recently published on the clinical effectiveness and cost of navigation programs for dementia [13], however this review did not focus on the implementation of these programs. Another recent review focused on the implementation considerations of implementing patient navigation for all adult populations [16], but this review did not highlight the unique considerations of implementing programs for individuals with dementia or their family caregivers who may have unique system navigation needs [4]. Additionally, this review was limited in its search strategy and thus may have inadvertently have excluded navigation programs for individuals with dementia beyond patient navigation [11]. Therefore, the goal of this scoping review will be to better develop an understanding of all system navigation approaches used in dementia care and to identify optimal ways to implement these programs across various settings. A preliminary search was conducted on July 12, 2021 in CINAHL and PubMed and no review with the same topic was identified. Methods Design A scoping review methodology was selected as scoping reviews are useful when seeking to determine and synthesize the current state of knowledge in an area of interest [17]. We will follow the scoping review guidelines of Arksey and O’Malley [17]. The guidelines involve six stages: (1) identify the research question(s); (2) identify relevant studies; (3) select studies; (4) chart the data; (5) collate, summarise and report the results and (6) consult with key stakeholders, such as clinical members of the research team [17]. The applied to systematic reviews, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Protocols extension for scoping reviews (PRISMA-ScR). was used to prepare this scoping review protocol [18]. We will not access the quality of the literature [18]. Theoretical Framework A useful framework to understand implementation of complex interventions is the Consolidated Framework for Implementation Research (CFIR) which offers an overarching classification of barriers and facilitators to implementation success into 5 domains: (1) intervention characteristics, (2) the outer setting (e.g., policy environment), (3) the inner setting (e.g., organizational characteristics), (4) characteristics of individuals, and (5) the implementation process [19, 20]. The CFIR is particularly helpful in better understanding the implementation considerations of patient navigator programs [11]. This scoping review will be theoretically guided by the CFIR [11]. Research Questions This scoping review will answer the research question: What is known about implementing patient navigator programs for individuals with dementia? For the purpose of this study, we will include all forms of dementia and mild-cognitive impairment. Identify Relevant Studies Searches will be conducted in Ageline, Cochrane Central Register of Controlled Trials (CENTRAL), CINAHL, Cochrane Database of Systematic Reviews, Embase, Ovid MEDLINE(R) (including Epub Ahead of Print, In-Process and Other Non-Indexed Citations, Ovid MEDLINE(R) Daily), OTSeeker, PeDRO, PsycINFO and Scopus. Search strategies will include the use of text words and subject headings (e.g., MeSH and Emtree) related to (1) system navigation (2) dementia (including mild cognitive impairment). The search strategy will be peer reviewed using Peer Review of Electronic Search Strategies guidelines [21]. Select Studies Articles can be included if they focus on any system or patient navigator program for individuals with dementia or mild-cognitive impairment and/or for their family caregivers and published in English. Articles that describe system navigation programs for older adults (aged 50 and over) broadly, and includes those with dementia or mild cognitive impairment can be included. Programs that are designed for adults with cognitive deficits that may be due to a psychiatric condition will be excluded. We will define system navigation programs as programs that aim to enhance the timely access or coordination amongst health and social care services for individuals with dementia and mild cognitive impairment [13]. These programs may or may not include an individual patient navigator or can include a team of individuals aimed at helping adults and family caregivers access available resources [13]. Reported programs have to be implemented and therefore, protocols will not be considered. This scoping review will consider study designs including, but not limited to, descriptive observational study designs, qualitative studies, individual case reports and descriptive cross-sectional studies randomized controlled trials, non-randomized controlled trials, quasi-experimental, before and after studies, prospective and retrospective cohort studies, case-control studies and analytical cross-sectional studies. Other literature, such as unpublished papers, descriptions of programs and/or evaluation reports will also be included. This study will not include systematic, scoping and literature reviews. This review will also not consider grey literature that does sufficiently describe the system navigation initiative implemented (e.g. implementation process, location, population, impact), conference abstracts or articles without an accessible full-text. We will also conduct a hand search of the reference lists of included articles to ensure we have not missed any. Chart the Data A data extraction form created by the authors of this protocol will be used when extracting data from studies meeting inclusion criteria. To ensure inter-rater reliability, the data abstraction form will be pilot tested with a subset of the articles and modified to enhance extractor agreement and fit with information presented in included articles. Extracted data will include the key characteristics of the implemented programs and factors that influence their implementation (e.g., process, key individuals involved). Collate, summarise and report the results We will provide a summary and synthesis of the results by following the three distinct steps for reporting the results by Levac and colleagues [22]: (1) analysis, (2) reporting the results, as they relate to our objective and research questions and (3) relate the findings to the implications they may have for health service policy. The analysis will be theoretically informed by the CFIR [20]. Consult with Key Stakeholders Preliminary findings will be shared on an ongoing basis at key meetings with our larger research team that consists of patient navigator managers, social workers, nurses and healthcare leaders. In all meetings, we will take detailed notes of the discussion that occurs. We will summarize their feedback and include it in our qualitative thematic analysis and results. Conclusion This review is guided by a well-known methodological framework and will help contribute to expanding our understanding of how to best deliver patient navigator programs for individuals living with dementia and their family caregivers. This scoping review will also identify gaps in existing system navigator programs that need to be addressed to help best support the transitional care of individuals with dementia and mild cognitive impairment.