Background
Adults with multiple chronic conditions who also suffer from mental health comorbidities and/or social vulnerability require services from many providers across different sectors, including the health and social care sectors. They have health and/or social care needs that are more complex than adults who need services from only one sector [
1] and suffer from poorer health indicators and higher mortality rates while generating considerable cost to the health and social services system [
2,
3]. In developed countries, nearly 70% of healthcare costs [
4] are attributable to 10% of the population, mainly because of complex needs [
5,
6].
Services organization for these adults with complex needs requires integrated care across providers of all settings and sectors [
7,
8]. The World Health Organization proposes a user-led definition of integrated care to support strategies at all levels of the system: “
My care is planned with people who work together to understand me and my carer(s), put me in control, coordinate and deliver services to achieve my best outcomes” [
8,
9]. A recent systematic review of the effects of integrated care indicated improvement in quality of care, patient satisfaction, and access to care [
10]. A meta-analysis investigating the impacts of integrated care showed a significant reduction of 19% in the probability of hospitalization when compared with usual care [
11]. Models of integrated care, such as case management or the patient-centered medical home [
8], aim to overcome fragmentation and improve care transitions as patients move across different settings and sectors [
12]. Better understanding of care transitions of adults with complex needs is necessary mandatory to improve and implement these models of integrated care [
13].
The Canadian Institutes of Health Research (CIHR) defines care transition as a transfer of responsibility between health and social care providers across different settings and sectors [
14]. The patient’s journey through the system goes beyond only post-hospital care transitions and can involve a number of interfaces between home, community, primary care, and hospital settings [
15], creating many points of transitions and patient-provider interactions, which are an integral part of a patient’s journey through the health and social care system [
16]. In these care transitions, patients with complex needs often have to repeat their story, develop trust and new relationships with many providers, and make many important decisions. Problems in care transitions can seriously impact the four dimensions of the health and social care system performance [
17] by: 1) affecting patients’ experience of their journey; 2) producing emotional and physical pain and suffering for patients and families, delaying appropriate treatment or support, increasing morbidity and mortality; 3) resulting in provider dissatisfaction with care coordination; and 4) leading to additional tests, primary care or emergency department visits, readmissions to hospital, producing considerable undue costs [
15,
18].
Focusing on the care transitions of patients with complex needs is a priority [
15] for health researchers, and a better understanding of these transitions, taking into account patients’ experiences is the next necessary step towards improvement and implementation of integrated care models [
19]. Considerable evidence demonstrates that the experience of individuals and their families should be the central focus [
20,
21] of efforts to better understand care transitions. Coleman et al. [
13,
22] completed many studies in the United States of America (USA) to better understand challenges and opportunities for improving care transitions for older people, especially post-hospital care transitions. They developed the Care Transition Measure to provide insight into the quality of care transitions for post-hospital care [
23], sought family caregivers’ experience regarding the challenges they faced facilitating their loved ones’ transitions [
24], and evaluated an intervention for preparing older patients and caregivers to participate in post-hospital care transitions [
25,
26]. Coleman et al. concluded that supporting patients and caregivers to take a more active role during care transitions appears promising for reducing rates of subsequent hospitalization. This evidence has led to the development of “toolkits” for guiding care transitions after hospital or emergency discharge, like the BestPATH evidence informed improvement package produced by Health Quality Ontario [
27]. Coleman et al. [
25], recommended that future studies should include more diverse populations. In Canada, Giosa et al. [
28] and Backman et al. [
29] examined the experiences of older adults and their families during care transitions between hospital and home [
28] or across healthcare settings [
29]. Their results stressed the need for active involvement of older adults and their families in managing care transitions [
27].
In a study on patients’ experience transitioning between primary care and the emergency department in Belgium, Karam et al. [
30] showed that patients with comorbidities perceived poor coordination between both levels of care. Other authors have also reported on the experience of providers with care transitions [
31,
32]. In the USA, Davis et al. [
31] reported that poor care transitions limited the ability of healthcare providers to provide optimal patient care. Lack of standardized processes, poor multidisciplinary communication, and fragmented communication across settings led to chaotic and challenging transitions; poor patient outcomes; and feelings of futility and dissatisfaction among providers. Providers reported that patients with complex needs were especially vulnerable during care transitions [
31]. In Canada, Jeffs et al. [
32] stressed the importance of having a collaborative approach amongst providers during the care transition process.
These previous studies and initiatives emphasize the important challenges faced by patients, their families, as well as care providers regarding care transitions. They also outline the importance of involving patients and their families in the care transitions, and the fact that adults with complex needs are particularly vulnerable to fragmented care. However, the experiences of non-geriatric patients remain understudied. Moreover, many studies only concern post-hospital discharge. While this transition appears important from a provider or manager perspective because of the risk of readmission and additional costs, the patient’s journey is much more complex and includes many transitions in care that are embedded in particular life contexts. We do not know much about patients’ experience of their whole journey, including transitions with organisations anchored in the patient’s neighborhood, such as community-based organisations.
Research objectives
The objectives of the study are to: 1) identify individual and environmental characteristics of patients with complex needs that are associated with good or poor experiences of care transitions; 2) better understand the care transition experience of patients with complex needs and their families across community, primary care, and hospital settings; 3) better understand the experience of providers and health managers regarding care transitions of patients with complex needs; 4) examine care transitions by bringing together the experiences of patients and family members, providers, and community partners, as well as health managers.
Discussion
This project is innovative and creative in many ways. It will be one of the few studies examining care transitions of adults with complex needs and adopting a comprehensive vision of care transitions. In line with the pan-Canadian Strategy for Patient-Oriented Research (SPOR) [
87], we will focus on patients’ lived experiences of care transitions. We propose to bring together the experiences of patients and family members, providers, and community partners such as health managers.
The results of this project will be of interest to researchers as well as to decision-makers in the healthcare system. Our understanding of the patients’ experience of their whole journey regarding care transitions is very limited. Through this project, we expect to contribute new knowledge about the care transitions of adults with complex needs using a comprehensive vision of care transitions. This project will help inform decision-makers, specifically regarding how individual and environmental characteristics of patients with complex needs are associated with good or poor experiences of care transitions. Many strategies will thus be undertaken during the multiple case study, so that project conclusions can be transferable to other contexts: theoretical enlightenment; reproduction of observations in many cases; and in-depth description of context, facilitators, and barriers in care transitions.
Many patients with complex needs often use health and social services. However, few patients with complex needs are not frequent ED users, so these patients will be missed by our inclusion criteria focusing on ED visits. Also, results could be transferred to networks presenting similar characteristics. Recruitment of six different networks and a detailed description of their context will promote transferability.
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