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.

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.

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.

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.

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.

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.

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.

Safety threats and opportunities to improve interfacility care transitions: insights from patients and family members.

AIM: To explore patients' and family members' perspectives on how safety threats are detected and managed across care transitions and strategies that improve care transitions from acute care hospitals to complex continuing care and rehabilitation health care organizations. BACKGROUND: Poorly executed care transitions can result in additional health care spending due to adverse outcomes and delays as patients wait to transfer from acute care to facilities providing different levels of care. Patients and their families play an integral role in ensuring they receive safe care, as they are the one constant in care transitions processes. However, patients' and family members' perspectives on how safety threats are detected and managed across care transitions from health care facility to health care facility remain poorly understood. METHODS: This qualitative study used semistructured interviews with patients (15) and family members (seven) who were transferred from an acute care hospital to a complex continuing care/rehabilitation care facility. Data were analyzed using a directed content analytical approach. RESULTS: OUR RESULTS REVEALED THREE KEY OVERARCHING THEMES IN THE PERCEPTIONS: lacking information, getting "funneled through" too soon, and difficulty adjusting to the shift from total care to almost self-care. Several patients and families described their expectations and experiences associated with their interfacility care transitions as being uninformed about their transfer or that transfer happened too early. In addition, study participants identified the need for having a coordinated approach to care transitions that engages patients and family members. CONCLUSION: Study findings provide patients' and family members' perspectives on key safety threats and how to improve care transitions. Of particular importance is the need for patients and family members to play a more active role in their care transition planning and self-care management.

A scoping review and thematic classification of patient complexity: offering a unifying framework.

The path to improving healthcare quality for individuals with complex health conditions is complicated by a lack of common understanding of complexity. Modern medicine, together with social and environmental factors, has extended life, leading to a growing population of patients with chronic conditions. In many cases, there are social and psychological factors that impact treatment, health outcomes, and quality of life. This is the face of complexity. Care challenges, burden, and cost have positioned complexity as an important health issue. Complex chronic conditions are now being discussed by clinicians, researchers, and policy-makers around such issues as quantification, payment schemes, transitions, management models, clinical practice, and improved patient experience. We conducted a scoping review of the literature for definitions and descriptions of complexity. We provide an overview of complex chronic conditions, and what is known about complexity, and describe variations in how it is understood. We developed a Complexity Framework from these findings to guide our approach to understanding patient complexity. It is critical to use common vernacular and conceptualization of complexity to improve service and outcomes for patients with complex chronic conditions. Many questions still persist about how to develop this work with a health and social care lens; our framework offers a foundation to structure thinking about complex patients. Further insight into patient complexity can inform treatment models and goals of care, and identify required services and barriers to the management of complexity. Journal of Comorbidity 2012;2:1-9.

Conservation of resources theory and research use in health systems.

BACKGROUND: Health systems face challenges in using research evidence to improve policy and practice. These challenges are particularly evident in small and poorly resourced health systems, which are often in locations (in Canada and globally) with poorer health status. Although organizational resources have been acknowledged as important in understanding research use resource theories have not been a focus of knowledge translation (KT) research. What resources, broadly defined, are required for KT and how does their presence or absence influence research use?In this paper, we consider conservation of resources (COR) theory as a theoretical basis for understanding the capacity to use research evidence in health systems. Three components of COR theory are examined in the context of KT. First, resources are required for research uptake. Second, threat of resource loss fosters resistance to research use. Third, resources can be optimized, even in resource-challenged environments, to build capacity for KT. METHODS: A scan of the KT literature examined organizational resources needed for research use. A multiple case study approach examined the three components of COR theory outlined above. The multiple case study consisted of a document review and key informant interviews with research team members, including government decision-makers and health practitioners through a retrospective analysis of four previously conducted applied health research studies in a resource-challenged region. RESULTS: The literature scan identified organizational resources that influence research use. The multiple case study supported these findings, contributed to the development of a taxonomy of organizational resources, and revealed how fears concerning resource loss can affect research use. Some resources were found to compensate for other resource deficits. Resource needs differed at various stages in the research use process. CONCLUSIONS: COR theory contributes to understanding the role of resources in research use, resistance to research use, and potential strategies to enhance research use. Resources (and a lack of them) may account for the observed disparities in research uptake across health systems. This paper offers a theoretical foundation to guide further examination of the COR-KT ideas and necessary supports for research use in resource-challenged environments.

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.