Addressing the Evidence Gap in Stroke Rehabilitation for Complex Patients: A Preliminary Research Agenda.

Evidence suggests that a stroke occurs in isolation (no comorbid conditions) in less than 6% of patients. Multimorbidity, compounded by psychosocial issues, makes treatment and recovery for stroke increasingly complex. Recent research and health policy documents called for a better understanding of the needs of this patient population, and for the development and testing of models of care that meet their needs. A research agenda specific to complexity is required. The primary objective of the think tank was to identify and prioritize research questions that meet the information needs of stakeholders, and to develop a research agenda specific to stroke rehabilitation and patient complexity. A modified Delphi and World Café approach underpinned the think tank meeting, approaches well recognized to foster interaction, dialogue, and collaboration between stakeholders. Forty-three researchers, clinicians, and policymakers attended a 2-day meeting. Initial question-generating activities resulted in 120 potential research questions. Sixteen high-priority research questions were identified, focusing on predetermined complexity characteristics-multimorbidity, social determinants, patient characteristics, social supports, and system factors. The final questions are presented as a prioritized research framework. An emergent result of this activity is the development of a complexity and stroke rehabilitation research network. The research agenda reflects topics of importance to stakeholders working with stroke patients with increasingly complex care needs. This robust process resulted in a preliminary research agenda that could provide policymakers with the evidence needed to make improvements toward better-organized services, better coordination between settings, improved patient outcomes, and lower system costs.

Complex health conditions and mental health training: How prepared is the frontline service provider?

How prepared are frontline service providers for dealing with mental illness in patients with multiple, complex health conditions? The aims of this study were two-fold, to gain insight into the kinds of training and education desired by frontline service providers in a healthcare setting and to compile a list of key questions for health service managers and education leaders to address based on our findings. Over 100 care providers responded to a survey. Over half of the respondents indicated no mental health training, and the majority desired increased training and support. Suggested approaches ranged from regular workshops (eg, case presentations) to systems-level strategies (eg, partnering with mental health organizations). This study provides a critical first look into what frontline service providers identify as being essential to their skill set in working with a complex population and raises important questions for healthcare managers and educators to consider in addressing this gap.

Blame, Shame, and Lack of Support: A Multilevel Study on Obesity Management.

In this research, we examined the experiences of individuals living with obesity, the perceptions of health care providers, and the role of social, institutional, and political structures in the management of obesity. We used feminist poststructuralism as the guiding methodology because it questions everyday practices that many of us take for granted. We identified three key themes across the three participant groups: blame as a devastating relation of power, tensions in obesity management and prevention, and the prevailing medical management discourse. Our findings add to a growing body of literature that challenges a number of widely held assumptions about obesity within a health care system that is currently unsupportive of individuals living with obesity. Our identification of these three themes is an important finding in obesity management given the diversity of perspectives across the three groups and the tensions arising among them.

The care delivery experience of hospitalized patients with complex chronic disease.

OBJECTIVE: This study investigated what is important in care delivery from the perspective of hospital inpatients with complex chronic disease, a currently understudied population. PARTICIPANTS AND SETTING: One-on-one semi-structured interviews were conducted with inpatients at a continuing care/rehabilitation hospital (n = 116) in Canada between February and July 2011. DESIGN: The study design was mixed methods and reports on patient characteristics and care delivery experiences. Basic descriptive statistics were run using SPSS version 17, and thematic analysis on the transcripts was conducted using NVivo9 software. RESULTS: Patients had an average of 5 morbidities and several illness symptoms including activity of daily living impairments, physical pain and emotional disturbance. Three broad themes (each with one or more subthemes) were generated from the data representing important components of care delivery: components of the care plan (a comprehensive assessment, supported transitions and a bio-psycho-social care package); care capacity and quality (optimal staff to patient ratios, quicker response times, better patient-provider communication and consistency between providers) and the patient-provider relationships (characterized by respect and dignity). CONCLUSIONS: As health systems throughout the industrialized world move to sustain health budgets while optimizing quality of care, it is critical to better understand this population, so that appropriate metrics, services and policies can be developed. The study has generated a body of evidence on the important components of care delivery from the perspectives of a diverse group of chronically ill individuals who have spent a considerable amount of time in the health-care system. Moving forward, exploration around the appropriate funding models and skill mix is needed to move the evidence into changed practice.

Clinicians' views on improving inter-organizational care transitions.

BACKGROUND: Patients with complex health conditions frequently require care from multiple providers and are particularly vulnerable to poorly executed transitions from one healthcare setting to another. Poorly executed care transitions can result in negative patient outcomes (e.g. medication errors, delays in treatment) and increased healthcare spending due to re-hospitalization or emergency room visits by patients. Little is known about care transitions from acute care to complex continuing care and rehabilitation settings. Thus, a qualitative study was undertaken to explore clinicians' perceptions of strategies aimed at improving patient care transitions from acute care hospitals to complex continuing care and rehabilitation healthcare organizations. METHODS: A qualitative study using semi-structured interviews was conducted with clinicians employed at two selected healthcare facilities: an acute care hospital and a complex continuing care/rehabilitation organization, respectively. Analysis of the transcripts involved the creation of a coding schema using the content analyses outlined by Ryan and Bernard. In total, 31 interviews were conducted with clinicians at the participating study sites. RESULTS: Three themes emerged from the data to delineate what study participants described as strategies to ensure quality inter-organizational transitions of patients transferred from acute care to the complex continuing care and rehabilitation hospital. These themes are: 1) communicating more effectively; 2) being vigilant around the patients' readiness for transfer and care needs; and 3) documenting more accurately and completely in the patient transfer record. CONCLUSION: Our study provides insights from the perspectives of multiple clinicians that have important implications for health care leaders and clinicians in their efforts to enhance inter-organizational care transitions. Of particular importance is the need to have a collective and collaborative approach amongst clinicians during the inter-organizational care transition process. Study findings also suggest that the written patient transfer record needs to be augmented with a verbal report whereby the receiving clinician has an opportunity to discuss with a clinician from the acute care hospital the patient's status on discharge and plan of care. Integral to future research efforts is designing and testing out interventions to optimize inter-organizational care transitions and feedback loops for complex medical patients.

Does moving from a high-poverty to lower-poverty neighborhood improve mental health? A realist review of 'Moving to Opportunity'.

Ray Pawson's realist review method was used to analyse 22 evaluations/reviews of the Moving to Opportunity (MTO) housing intervention. MTO was a randomized controlled trial that moved families from high-poverty to low-poverty neighborhoods in five US cities between 1994 and 2006. This realist review focussed on mental health outcomes of families who moved, as well as the mechanisms through which moving influenced mental health. It identified and assessed the effectiveness of the underlying theory driving MTO, and suggests revising the existing theory. This realist review suggests that, even when moves are voluntary, there are potentially negative mental health outcomes from these types of social interventions. Directing resources towards the improvement of existing communities is one way of improving health outcomes for all community residents.

Six essential roles of health promotion research centres: the Atlantic Canada experience.

Over the past 20 years, the federal government and universities across Canada have directed resources towards the development of university-based health promotion research centres. Researchers at health promotion research centres in Canada have produced peer-reviewed papers and policy documents based on their work, but no publications have emerged that focus on the specific roles of the health promotion research centres themselves. The purpose of this paper is to propose a framework, based on an in-depth examination of one centre, to help identify the unique roles of health promotion research centres and to clarify the value they add to promoting health and advancing university goals. Considering the shifting federal discourse on health promotion over time and the vulnerability of social and health sciences to changes in research funding priorities, health promotion research centres in Canada and elsewhere may need to articulate their unique roles and contributions in order to maintain a critical focus on health promotion research. The authors briefly describe the Atlantic Health Promotion Research Centre (AHPRC), propose a framework that illustrates six essential roles of health promotion research centres and describe the policy contexts and challenges of health promotion research centres. The analysis of research and knowledge translation activities over 15 years at AHPRC sheds light on the roles that health promotion research centres play in applied research. The conclusion raises questions regarding the value of university-based research centres and challenges to their sustainability.

Creating a supportive environment for living with stroke in rural areas: two low-cost community-based interventions.

With the growing burden of chronic illness affecting aging populations, rural health systems are faced with unique challenges to support and promote health in their communities. The Yarmouth Stroke Project was a 5-year initiative aimed at improving health care services for stroke survivors in rural Nova Scotia, Canada. A needs assessment indicated a lack of support to self-manage stroke during community re-integration. The needs reported by stroke survivors and their caregivers included informational and emotional support. A logic model approach was used to frame program planning leading to the design of two low-cost interventions. The first, a Community Resource Guide, was developed to address informational needs and enable stroke survivors to access community-specific resources. The second intervention, designed to address the emotional support needs of stroke survivors and their caregivers, involved collection and publication of local narratives. The stories described the experiences of community members affected by stroke, offering practical knowledge and messages of hope. The resource guide and stories represent two low-cost strategies for supporting and promoting the health of people living with stroke in rural settings.

Using Exploratory Trials to Identify Relevant Contexts and Mechanisms in Complex Electronic Health Interventions: Evaluating the Electronic Patient-Reported Outcome Tool.

BACKGROUND: Designing appropriate studies for evaluating complex interventions, such as electronic health solutions to support integrated care, remains a methodological challenge. With the many moving parts of complex interventions, it is not always clear how program activities are connected to anticipated and unanticipated outcomes. Exploratory trials can be used to uncover determinants (or mechanisms) to inform content theory that underpins complex interventions before designing a full evaluation plan. OBJECTIVE: A multimethod exploratory trial of the electronic patient-reported outcome (ePRO) tool was conducted to uncover contexts, processes and outcome variables, and the mechanisms that link these variables before full-scale evaluation. ePRO is a mobile app and portal designed to support goal-oriented care in interdisciplinary primary health care practices (clinical-level integration). This paper offers evaluation findings and methodological insight on how to use exploratory trial data to identify relevant context, process, and outcome variables, as well as central (necessary to achieving outcomes) versus peripheral (less critical and potentially context dependent) mechanisms at play. METHODS: The 4-month trial was conducted in 2 primary health care practices in Toronto, Canada. The patients were randomized into control and intervention groups and compared pre and post on quality of life and activation outcome measures. Semistructured interviews were conducted with providers and patients in the intervention group. Narrative analysis was used to uncover dominant mechanisms that inform the intervention's content theory (how context and process variables are linked to outcomes). RESULTS: Overall, 7 providers, 1 administrator, and 16 patients (7-control, 9-intervention) participated in the study. This study uncovered many complex and nuanced context, process, and outcome variables at play in the intervention. Narrative analysis of patient and provider interviews revealed dominant story lines that help to tease apart central and peripheral mechanisms driving the intervention. Provider and patient story lines centered around fitting the new intervention into everyday work and life of patients and providers and meaningfulness of the intervention. These themes were moderated by patient-provider relationships going into and throughout the intervention, their comfort with technology, and the research process. CONCLUSIONS: Identifying dominant story lines using narrative analysis helps to identify the most relevant context and process variables likely to influence study outcomes. Normalization process theory emerges as a useful theory to uncover underlying mechanisms because of its emphasis on the social production and normalization of technological, processual, and social aspects of work; all found to be critical to our intervention. The number of complex, overlapping influencing variables suggests that complex interventions such as ePRO require us to pay careful attention to central versus peripheral mechanisms that will influence study outcomes. The narrative methods presented here are shown to be useful in uncovering these mechanisms and help to guide subsequent larger evaluation studies.

Stroke rehabilitation evidence and comorbidity: a systematic scoping review of randomized controlled trials.

BACKGROUND: Most strokes occur in the context of other medical diagnoses. Currently, stroke rehabilitation evidence reviews have not synthesized or presented evidence with a focus on comorbidities and correspondingly may not align with current patient population. The purpose of this review was to determine the extent and nature of randomized controlled trial stroke rehabilitation evidence that included patients with multimorbidity. METHODS: A systematic scoping review was conducted. Electronic databases were searched using a combination of terms related to "stroke" and "rehabilitation." Selection criteria captured inpatient rehabilitation studies. Methods were modified to account for the amount of literature, classified by study design, and randomized controlled trials (RCTs) were abstracted. RESULTS: The database search yielded 10771 unique articles. Screening resulted in 428 included RCTs. Three studies explicitly included patients with a comorbid condition. Fifteen percent of articles did not specify additional conditions that were excluded. Impaired cognition was the most commonly excluded condition. Approximately 37% of articles excluded patients who had experienced a previous stroke. Twenty-four percent excluded patients one or more Charlson Index condition, and 83% excluded patients with at least one other medical condition. CONCLUSIONS: This review represents a first attempt to map literature on stroke rehabilitation related to co/multimorbidity and identify gaps in existing research. Existing evidence on stroke rehabilitation often excluded individuals with comorbidities. This is problematic as the evidence that is used to generate clinical guidelines may not match the patient typically seen in practice. The use of alternate research methods are therefore needed for studying the care of individuals with stroke and multimorbidity.

Improving Patient Experience and Primary Care Quality for Patients With Complex Chronic Disease Using the Electronic Patient-Reported Outcomes Tool: Adopting Qualitative Methods Into a User-Centered Design Approach.

BACKGROUND: Many mHealth technologies do not meet the needs of patients with complex chronic disease and disabilities (CCDDs) who are among the highest users of health systems worldwide. Furthermore, many of the development methodologies used in the creation of mHealth and eHealth technologies lack the ability to embrace users with CCDD in the specification process. This paper describes how we adopted and modified development techniques to create the electronic Patient-Reported Outcomes (ePRO) tool, a patient-centered mHealth solution to help improve primary health care for patients experiencing CCDD. OBJECTIVE: This paper describes the design and development approach, specifically the process of incorporating qualitative research methods into user-centered design approaches to create the ePRO tool. Key lessons learned are offered as a guide for other eHealth and mHealth research and technology developers working with complex patient populations and their primary health care providers. METHODS: Guided by user-centered design principles, interpretive descriptive qualitative research methods were adopted to capture user experiences through interviews and working groups. Consistent with interpretive descriptive methods, an iterative analysis technique was used to generate findings, which were then organized in relation to the tool design and function to help systematically inform modifications to the tool. User feedback captured and analyzed through this method was used to challenge the design and inform the iterative development of the tool. RESULTS: Interviews with primary health care providers (n=7) and content experts (n=6), and four focus groups with patients and carers (n=14) along with a PICK analysis-Possible, Implementable, (to be) Challenged, (to be) Killed-guided development of the first prototype. The initial prototype was presented in three design working groups with patients/carers (n=5), providers (n=6), and experts (n=5). Working group findings were broken down into categories of what works and what does not work to inform modifications to the prototype. This latter phase led to a major shift in the purpose and design of the prototype, validating the importance of using iterative codesign processes. CONCLUSIONS: Interpretive descriptive methods allow for an understanding of user experiences of patients with CCDD, their carers, and primary care providers. Qualitative methods help to capture and interpret user needs, and identify contextual barriers and enablers to tool adoption, informing a redesign to better suit the needs of this diverse user group. This study illustrates the value of adopting interpretive descriptive methods into user-centered mHealth tool design and can also serve to inform the design of other eHealth technologies. Our approach is particularly useful in requirements determination when developing for a complex user group and their health care providers.

Measuring food availability and accessibility among adolescents: Moving beyond the neighbourhood boundary.

Geographic methods have provided insight about food location availability and accessibility in understanding neighbourhood variations in health. However, quantifying exposure to food locations within a pre-defined range of an individual's residence ignores locations outside of the residential neighbourhood encountered in daily life. Global positioning system (GPS) data enables exploration of multiple contextual influences on health. This study defines place in relation to behaviour, employing GPS data to 1) describe adolescent food environments within and outside of the residential buffer, 2) quantify actual food location visits, and 3) explore associations between availability and accessibility of food locations and dietary intake. Adolescents (N = 380; ages 12-16), wore GPS loggers for up to seven days. Availability and accessibility of food locations were defined by counts and distances to food locations within a 15-min walk (1 km) of home, as well as within 50 m of an adolescent's GPS track. We compared the proportion of food locations within the residential buffer to the proportion outside but within the GPS buffer. These proportions were compared to counts and distances to food locations actually visited. We explored associations between food location availability and accessibility with dietary intake variables. Food location availability and accessibility was greater and visits occurred more commonly outside of the residential buffer than within it. Food location availability and accessibility was greater for urban than suburban and rural adolescents. There were no associations between home-based measures of availability and accessibility and dietary intake and only one for GPS-based measures, with greater distance to convenience stores associated with greater fruit and vegetable consumption. This study provides important descriptive information about adolescent exposure to food locations. Findings confirm that traditional home-based approaches overestimate the importance of the neighbourhood food environment, but provide only modest evidence of linkages between the food environment beyond the residential neighbourhood boundary and dietary intake.

Stroke rehabilitation and patients with multimorbidity: a scoping review protocol.

Stroke care presents unique challenges for clinicians, as most strokes occur in the context of other medical diagnoses. An assessment of capacity for implementing "best practice" stroke care found clinicians reporting a strong need for training specific to patient/system complexity and multimorbidity. With mounting patient complexity, there is pressure to implement new models of healthcare delivery for both quality and financial sustainability. Policy makers and administrators are turning to clinical practice guidelines to support decision-making and resource allocation. Stroke rehabilitation programs across Canada are being transformed to better align with the Canadian Stroke Strategy's Stroke Best Practice Recommendations. The recommendations provide a framework to facilitate the adoption of evidence-based best practices in stroke across the continuum of care. However, given the increasing and emerging complexity of patients with stroke in terms of multimorbidity, the evidence supporting clinical practice guidelines may not align with the current patient population. To evaluate this, electronic databases and gray literature will be searched, including published or unpublished studies of quantitative, qualitative or mixed-methods research designs. Team members will screen the literature and abstract the data. Results will present a numerical account of the amount, type, and distribution of the studies included and a thematic analysis and concept map of the results. This review represents the first attempt to map the available literature on stroke rehabilitation and multimorbidity, and identify gaps in the existing research. The results will be relevant for knowledge users concerned with stroke rehabilitation by expanding the understanding of the current evidence.

Life interrupted and life regained? Coping with stroke at a young age.

Stroke is a leading cause of disability across the developed world, affecting an increasing number of younger people. In this article, we seek to understand the experience of stroke as a disabling life situation among young people and the strategies that they use to recover and cope. Directed content analysis was conducted from interviews with 17 community-dwelling stroke survivors aged 55 years and younger across the United Kingdom. The sample was drawn from a larger maximum variation sample of stroke survivors. Using the sociological concepts of biographical disruption and biographical repair as a guide, excerpts from the interviews pertaining to aspects of the patients' life that were interrupted, in addition to how they coped with the changes, were selected and analysed. All individuals described an "altered sense of self," a theme that included loss of identity, family disruption, and/or loss of valued activities. Individuals sought to adapt their sense of self by seeking external support, by restoring normality, and/or through positive reflection. Despite the adapted self that emerged, most individuals continued to experience impairments. While young stroke survivors adapt to their illness over time, they continue to experience impairments and disruptions in their personal and work lives. A holistic model of rehabilitation that helps individuals regain the capacity for everyday activities related to work, family life, and leisure can begin to address the emotional ramifications of diseases such as stroke, restore wellness, and work towards minimizing the burden felt by family caregivers and children.

Examining the steps-per-day trajectories of cardiac rehabilitation patients: a latent class growth analysis perspective.

PURPOSE: Research suggests that cardiac rehabilitation (CR) patients need to engage in at least 6500 steps per day to obtain health benefits. Unfortunately, very little is known about the steps-per-day trajectories of these patients and whether the demographic, clinical, and CR program characteristics are similar for these trajectories. METHODS: Patients (n = 235) completed a questionnaire assessing demographic and clinical variables upon entry to CR and subsequently wore a pedometer for 7 days at the end of CR, and 3, 6, and 9 months after completing CR. RESULTS: Latent class growth analyses showed that 3 classes of patients emerged that were termed nonadherers (averaged ∼3112 steps per day at the end of CR and remained stable up to 9 months after CR), significant decliners (averaged ∼7010 steps per day at the end of CR and steadily declined after CR), and optimal adherers (averaged ∼10 700 steps per day and remained stable after CR). Logistic regressions showed that nonadherers were more likely to be obese, have at least 1 comorbidity, and a lower exercise capacity compared with the significant decliners/optimal adherers. CONCLUSIONS: Distinct steps-per-day trajectories exist for CR patients that are partially distinguished by demographic and clinical variables.

Application of personalized medicine to chronic disease: a feasibility assessment.

Personalized Medicine has the potential to improve health outcomes and reduce the cost of care; however its adoption has been slow in Canada. Bridgepoint Health is a complex continuous care provider striving to reduce the burden of polypharmacy in chronic patients. The main goal of the study was to explore the feasibility of utilizing personalized medicine in the treatment of chronic complex patients as a preliminary institutional health technology assessment. We analyzed stroke treatment optimization as a clinical indication that could serve as a "proof of concept" for the widespread implementation of pharmacogenetics. The objectives of the study were three-fold:1. Review current practice in medication administration for stroke treatment at Bridgepoint Health2. Critically analyze evidence that pharmacogenetic testing could (or could not) enhance drug selection and treatment efficacy for stroke patients;3. Assess the cost-benefit potential of a pharmacogenetic intervention for stroke.Review current practice in medication administration for stroke treatment at Bridgepoint HealthCritically analyze evidence that pharmacogenetic testing could (or could not) enhance drug selection and treatment efficacy for stroke patients;Assess the cost-benefit potential of a pharmacogenetic intervention for stroke.We conducted a review of stroke treatment practices at Bridgepoint Health, scanned the literature for drug-gene and drug-outcome interactions, and evaluated the potential consequences of pharmacogenetic testing using the ACCE model.There is a substantial body of evidence suggesting that pharmacogenetic stratification of stroke treatment can improve patient outcomes in the long-term, and provide substantial efficiencies for the healthcare system in the short-term. Specifically, pharmacogenetic stratification of antiplatelet and anticoagulant therapies for stroke patients may have a major impact on the risk of disease recurrence, and thus should be explored further for clinical application. Bridgepoint Health, and other healthcare institutions taking this path, should consider launching pilot projects to assess the practical impact of pharmacogenetics to optimize treatment for chronic continuous care.

Defining quality outcomes for complex-care patients transitioning across the continuum using a structured panel process.

BACKGROUND: No standardised set of quality measures associated with transitioning complex-care patients across the various healthcare settings and home exists. In this context, a structured panel process was used to define quality measures for care transitions involving complex-care patients across healthcare settings. METHODS: A modified Delphi consensus technique based on the RAND method was used to develop measures of quality care transitions across the continuum of care. Specific stages included a literature review, individual rating of each measure by each of the panelists (n=11), a face-to-face consensus meeting, and final ranking by the panelists. RESULTS: The literature review produced an initial set of 119 measures. To advance to rounds 1 and 2, an aggregate rating of >75% of the measure was required. This analysis yielded 30/119 measures in round 1 and 11/30 measures in round 2. The final round of scoring yielded the following top five measures: (1) readmission rates within 30 days, (2) primary care visit within 7 days postdischarge for high-risk patients, (3) medication reconciliation completed at admission and prior to discharge, (4) readmission rates within 72 h and (5) time from discharge to homecare nursing visit for high-risk patients. CONCLUSIONS: The five measures identified through this research may be useful as indicators of overall care quality related to care transitions involving complex-care patients across different healthcare settings. Further research efforts are called for to explore the applicability and feasibility of using the quality measures to drive quality improvement across the healthcare system.