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1.  A self-evaluation tool for integrated care services: the Development Model for Integrated Care applied in practice 
The purpose of the workshop is to show the applications of the Development Model for Integrated Care (DMIC) in practice. This relatively new and validated model, can be used by integrated care practices to evaluate their integrated care, to assess their phase of development and reveal improvement areas. In the workshop the results of the use of the model in three types of integrated care settings in the Netherlands will be presented. Participants are offered practical instruments based on the validated DMIC to use in their own setting and will be introduced to the webbased tool.
To integrate care from multiple providers into a coherent and streamlined client-focused service, a large number of activities and agreements have to be implemented like streamlining information flows and adequate transfers of clients. In the large range of possible activities it is often not clear what essential activities are and where to start or continue. Also, knowledge about how to further develop integrated care services is needed. The Development Model for Integrated Care (DMIC), based on PhD research of Mirella Minkman, describes nine clusters containing in total 89 elements that contribute to the integration of care. The clusters are named: ‘client-centeredness’, ‘delivery system’, ‘performance management’, ‘quality of care’, ‘result-focused learning’, ‘interprofessional teamwork’, ‘roles and tasks’, ‘commitment’, and ‘transparant entrepreneurship’ [1–3]. In 2011 a new digital webbased self-evolution tool which contains the 89 elements grouped in nine clusters was developed. The DMIC also describes four phases of development [4]. The model is empirically validated in practice by assessing the relevance and implementation of the elements and development phases in 84 integrated care services in The Netherlands: in stroke, acute myocardial infarct (AMI), and dementia services. The validation studies are recently published [5, 6]. In 2011 also other integrated care services started using the model [7]. Vilans developed a digital web-based self-evaluation tool for integrated care services based on the DMIC. A palliative care network, four diabetes services, a youth care service and a network for autism used the self-evaluation tool to evaluate the development of their integrated care service. Because of its generic character, the model and tool are believed to be also interesting internationally.
Data sources
In the workshop we will present the results of three studies in integrated diabetes, youth and palliative care. The three projects consist of multiple steps, see below. Workshop participants could also work with the DMIC following these steps.
One: Preparation of the digital self-evolution tool for integrated care services
Although they are very different, the three integrated care services all wanted to gain insight in their development and improvement opportunities. We tailored the digital self-evaluation tool for each specific integrated care services, but for all the basis was the DMIC. Personal accounts for the digital DMIC self-evalution survey were sent to multiple partners working in each integrated care service (4–16 partners).
Two: Use of the online self-evaluation tool each partner of the local integrated care setting evaluated the integrated care by filling in the web-based questionnaire. The tool consists of three parts (A-C) named: general information about the integrated care practice (A); the clusters and elements of the DMIC (B); and the four phases of development (C). The respondents rated the relevance and presence of each element in their integrated care practice. Respondents were asked to estimate in which phase of development their thought their service was.
Three: Analysing the results
Advisers from Vilans, the Centre of excellence for long-term care in the Netherlands, analysed the self-evolution results in cooperation with the integrated care coordinators. The results show the total amount of implemented integrated care elements per cluster in spider graphs and the development phase as calculated by the DMIC model. Suggestions for further development of the integrated care services were analysed and reported.
Four: Discussing the implications for further development
In a workshop with the local integrated care partners the results of the self-evaluation were presented and discussed. We noticed remarkable results and highlight elements for further development. In addition, we gave advice for further development appropriate to the development phase of the integrated care service. Furthermore, the professionals prioritized the elements and decided which elements to start working on. This resulted in a (quality improvement) plan for the further development of the integrated care service.
Five: Reporting results
In a report all the results of the survey (including consensus scores) and the workshops came together. The integrated care coordinators stated that the reports really helped them to assess their improvement strategy. Also, there was insight in the development phase of their service which gave tools for further development.
Case description
The three cases presented are a palliative network, an integrated diabetes services and an integrated care network for youth in the Netherlands. The palliative care network wanted to reflect on their current development, to build a guiding framework for further development of the network. About sixteen professionals within the network worked with the digital self-evaluation tool and the DMIC: home care organisations, welfare organizations, hospice centres, health care organisations, community organizations.
For diabetes care, a Dutch health care insurance company wished to gain insight in the development of the contracted integrated care services to stimulate further development of the services. Professionals of three diabetes integrated care services were invited to fill in the digital self-evaluation tool. Of each integrated care service professionals like a general practitioner, a diabetes nurse, a medical specialist, a dietician and a podiatrist were invited. In youth care, a local health organisation wondered whether the DMIC could be helpful to visualize the results of youth integrated care services at process- and organisational level. The goal of the project was to define indicators at a process- and organisational level for youth care services based on the DMIC. In the future, these indicators might be used to evaluate youth care integrated care services and improve the quality of youth care within the Netherlands.
Conclusions and discussion
It is important for the quality of integrated care services that the involved coordinators, managers and professionals are aware of the development process of the integrated care service and that they focus on elements which can further develop and improve their integrated care. However, we noticed that integrated care services in the Netherlands experience difficulties in developing their integrated care service. It is often not clear what essential activities are to work on and how to further develop the integrated care service. A guiding framework for the development of integrated care was missing. The DMIC model has been developed for that reason and offers a useful tool for assessment, self-evaluation or improvement of integrated care services in practice. The model has been validated for AMI, dementia and stroke services. The latest new studies in diabetes, palliative care and youth care gave further insight in the generic character of the DMIC. Based on these studies it can be assumed that the DMIC can be used for multiple types of integrated care services. The model is assumed to be interesting for an international audience. Improving integrated care is a complex topic in a large number of countries; the DMIC is also based on the international literature. Dutch integrated care coordinators stated that the DMIC helped them to assess their integrated care development in practice and supported them in obtaining ideas for expanding and improving their integrated care activities.
The web-based self-evaluation tool focuses on a process- and organisational level of integrated care. Also, the self assessed development phase can be compared to the development phase as calculated by the DMIC tool. The cases showed this is fruitful input for discussions. When using the tool, the results can also be used in quality policy reports and improvement plans. The web-based tool is being tested at this moment in practice, but in San Marino we can present the latest webversion and demonstrate with a short video how to use the tool and model. During practical exercises in the workshop the participants will experience how the application of the DMIC can work for them in practice or in research. For integrated care researchers and policy makers, the DMIC questionnaire and tool is a promising method for further research and policy plans in integrated care.
PMCID: PMC3617779
development model for integrated care; development of integrated care services; implementation and improvement of integrated care; self evaluation
2.  Integrated working between primary health care services and care homes for older people: challenges from the approach study 
Within the UK health and social care policy is placing an increasing emphasis on improving the quality of care for older people in care homes through integrated working between health and social care services. This study aims to clarify the research available on integrated working and evaluate its impact on older people in order to devise a typology for informing future service development.
Kodner and Spreeuwenberg [1] argue that patient/person centred integrated working between health and social care should include methods and models which involve the different levels of organisation, management, funding and clinical care within and between them.
Phase one included a systematic review to evaluate interventions utilising integrated working between care home staff and health care practitioners, and a survey to describe care homes’ experiences of integrated working. Phase one will inform phase two; a case study evaluating six different approaches to integrated working currently in use in three different areas of England.
Results and conclusions
The review found evidence of integrated working between health care and care homes at the patient level of care, but minimal evidence of models that extended beyond this level. Findings from the survey, currently in progress, will also be presented.
The discussion will provide an overview of the challenges and issues surrounding integrated working.
PMCID: PMC3031803
integrated working; care homes; older people
3.  A personalized care plan in chronic care: implementation and evaluation 
Implementation and evaluation of a personalized care plan for approximately 350 people with (an increased risk of) cardiovascular disease in ten general practices in the Netherlands.
The ‘Healthy Vessels’ (‘Vitale Vaten’) care standard of 2009 describes the optimum care for people with (an increased risk of) cardiovascular disease and is based on the Chronic Care Model. New: working with a personalized care plan, with detailed attention for the promotion of self-management and shared decision-making (SDM). This requires patients to adopt a more active attitude, with a more coaching role from care providers. Vilans has developed the personalized care plan for cardiovascular disease (the booklet ‘Zorgplan Vitale Vaten’) and the personalized care plan for diabetes and for COPD in 2011. In 2011 Vilans also started with the development of a general care plan for patients with multi morbidity diseases.
Data sources
Patients: quantitative survey with a written questionnaire sent to approximately 75 patients. Baseline and end points for 40 patients, plus in-depth interviews with eight patients.
Care providers
Quantitative survey with a written questionnaire sent to 45 care providers. Baseline and end points for 22 care providers, plus in-depth interviews with 10 care providers.
Case description
The personalized care plan is produced by a shared decision-making process and consists of:
A prioritised list of the patient’s SMART objectives
A personalized plan for achieving those objectives
Agreements concerning what the patient will do himself/herself and the support or advice needed
Agreements concerning contact to review the progress (how and when)
The patient or the care provider notes the plan in the patient’s booklet (the ‘Zorgplan Vitale Vaten’=‘Healthy Vessels Care Plan’). This booklet also contains information about the risk factors for cardiovascular disease, the importance of the patient adopting an active role, measurement values, medication and the patient’s care providers.
Advisers from Vilans, the knowledge centre for long-term care in the Netherlands, provide participating organisations guidance for the implementation of the personalized care plan with: work conferences, supporting products and monthly support phone-calls or e-mails.
The project consists of the following phases:
Jan 2010 to Jun 2010: development of materials
Jun 2010 to Oct 2011: implementation and evaluation in ten general practices
Nov 2011 to Feb 2012: project completion and reporting
The results will be available in February 2012
The study questions in this project are:
What effects does the personalized care plan have on the level of self-management of the patients?
What effects does the personalized care plan have on professionals in a multidisciplinary team?
Do the effects also apply to ethnic minority patients and patients with a low socio-economic status?
(Preliminary) conclusions:
Self-management/Shared Decision Making is difficult to implement. Regular feedback and joint learning are needed.
It is helpful when agreements between the patient and the care provider are made concrete: writing things down makes a difference.
Variable response from patients: ranging from ‘good to know you have something to fall back on’ to ‘the idea of writing down personal objectives makes me feel a bit nervous’.
The personalized care plan does not seem suitable for all, in particular not for the elderly, for those of low socio-economic status, and for ethnic minorities.
Health care professionals are used to take care of patients with chronic diseases. They are very willing to help and give patients some advice about how they can prevent a chronic disease or have a good life with a chronic disease. During the conferences and phone calls we have with them, we see that the focus is more on caring instead of sharing and self-management. It frustrates professionals when patients do not behave the way they tell them to. They do not know how to handle or turn the conversation into self-management and rather fall back in their roll of caring. It seems necessary to get feedback on a regular basis so they can explore new ways of self-management support together in a multidisciplinary way.
Self-management support is more successful when professionals are working together, looking for ways to take into account the perspective and expectations of the patient as well as those of the professional. The personalized care plan can help patients and professionals exploring their new roles.
There are some relevant questions concerning personalized care plans in practice which we cannot yet answer. We would like to discuss these essential questions with the participants of INIC12. For example:
How important is it for patients to have a personalized care plan? Does it support them in making decisions concerning their health in daily life? In what way can a digital care plan provide help?
Do professionals improve their caring and communication with patients with chronic diseases when they use a personalized care plan?
Is it more successful when one professional is the central care provider for a patient?
What are good ways for integrating personalized care plans in usual care? Does it take more time in comparison to regular care?
How to create possibilities for professionals so they can regard the personalized care plan as an important topic in chronic care? We see it is difficult for a small group of patients. How to implement the personalized care plan for all the patients with a chronic disease?
What do the answers to these questions mean and does individual care planning change the health care process in such a way that self-management can flourish?
PMCID: PMC3617761
personalized care plan; self-management; vascular risk; multidisciplinary team; chronic care
4.  Feasible Introgression of an Anti-pathogen Transgene into an Urban Mosquito Population without Using Gene-Drive 
Introgressing anti-pathogen constructs into wild vector populations could reduce disease transmission. It is generally assumed that such introgression would require linking an anti-pathogen gene with a selfish genetic element or similar technologies. Yet none of the proposed transgenic anti-pathogen gene-drive mechanisms are likely to be implemented as public health measures in the near future. Thus, much attention now focuses instead on transgenic strategies aimed at mosquito population suppression, an approach generally perceived to be practical. By contrast, aiming to replace vector competent mosquito populations with vector incompetent populations by releasing mosquitoes carrying a single anti-pathogen gene without a gene-drive mechanism is widely considered impractical.
Methodology/Principal Findings
Here we use Skeeter Buster, a previously published stochastic, spatially explicit model of Aedes aegypti to investigate whether a number of approaches for releasing mosquitoes with only an anti-pathogen construct would be efficient and effective in the tropical city of Iquitos, Peru. To assess the performance of such releases using realistic release numbers, we compare the transient and long-term effects of this strategy with two other genetic control strategies that have been developed in Ae. aegypti: release of a strain with female-specific lethality, and a strain with both female-specific lethality and an anti-pathogen gene. We find that releasing mosquitoes carrying only an anti-pathogen construct can substantially decrease vector competence of a natural population, even at release ratios well below that required for the two currently feasible alternatives that rely on population reduction. Finally, although current genetic control strategies based on population reduction are compromised by immigration of wild-type mosquitoes, releasing mosquitoes carrying only an anti-pathogen gene is considerably more robust to such immigration.
Contrary to the widely held view that transgenic control programs aimed at population replacement require linking an anti-pathogen gene to selfish genetic elements, we find releasing mosquitoes in numbers much smaller than those considered necessary for transgenic population reduction can result in comparatively rapid and robust population replacement. In light of this non-intuitive result, directing efforts to improve rearing capacity and logistical support for implementing releases, and reducing the fitness costs of existing recombinant technologies, may provide a viable, alternative route to introgressing anti-pathogen transgenes under field conditions.
Author Summary
Dengue is transmitted by the Aedes aegypti mosquito. Releases of genetically sterile males have been shown to reduce wild mosquito numbers. An alternative approach is to release mosquitoes carrying genes blocking dengue transmission. It is often assumed that spreading such genes in mosquito populations requires using selfish genetic elements (SGEs - genes that are inherited at higher rates than other genes in the genome). Absent such techniques, the release numbers required to transform mosquito populations is seen as prohibitive. However, strategies that rely on SGEs or related technologies to spread anti-dengue genes are unlikely to be implemented in the near future as a public health response. Using a biologically detailed model of Aedes aegypti populations dynamics and genetics, we assess how many mosquitoes need to be released to spread an anti-pathogen gene in an urban environment without using an SGE. We compare release numbers with two other, currently feasible transgenic strategies: releasing mosquitoes with female-lethal genes, and mosquitoes carrying both female-lethal and anti-pathogen genes. We show that even without using SGEs, releasing mosquitoes in numbers much smaller than those considered necessary for transgenic population reduction can effectively reduce the ability of Aedes aegypti to spread dengue.
PMCID: PMC4081001  PMID: 24992213
5.  Improving quality of chronic care by integrating the primary care setting 
One of the main barriers for further improving the quality of chronic care was the absence of performance-based financing. With the introduction of a Diagnosis-Based Costing method (DBC) within primary care, a new organisational model is implemented in the region Maastricht. This integrated care model includes all relevant stakeholders, such as GPs, district nurses, dieticians, nurse practitioners, practice assistants, physiotherapists and hospital-based specialists. Aim is to optimise the quality of fragmented primary care for chronically ill within the existing budget restraints or, if even possible, to diminish the present costs for chronic care.
Context and data sources
Increasing prevalence of chronic illnesses, an ageing society and the observation that existing care systems approach mostly insufficiently to specific health problems and patients' needs asked for redesigning the existing healthcare system. We started by focussing on primary diabetes and COPD care. For the delivery of diabetes and COPD care within the entire primary care setting health care insurance companies contract with GPs only. GPs act as gatekeepers and coordinate the delivery of care within the primary care setting. Evidence-based medical guidelines and evidence about the organisation of respectively integrated diabetes and COPD care were used to outline care in multidisciplinary protocols. Referral criteria for secondary care are formulated as well. Within this protocol hospital-based specialists deliver specialized care while working in the GPs electronic patient file.
Case description
In 2007 and 2008, respectively 6390 and 6700 diabetes patients, derived form 87 GPs, have been included in the DBC-cohorts. The DBC COPD has been implemented in October last year, until now 2253 patients are registered. DBCs for cardiovascular diseases and for depression and anxiety are under construction and will be implemented by the end of this year. All healthcare givers register their delivered care into the same electronic patient file.
Preliminary conclusions/discussion
Based on the preliminary data it can be concluded that the integrated care model has been adopted by professionals in the primary care setting, patients and the health care insurance companies. Moreover, agreement has been reached in the process of care delivery, the indicators for performance-based costing and the collection of data for care and research purposes.
Matches and gaps between the actual delivered care and the protocol are explained by the Chronic Care Model and the Management Control Theory (an article is accepted for international publication). Patient outcomes, cost-effectiveness and benefits of these programmes are now subject of investigation. The main challenge for the future is to answer the question whether such disease-specific driven approaches remain suitable for patients suffering from more than one chronic disease (multi-morbidity).
PMCID: PMC2807074
quality; chronic care
6.  Integrated care as a means to improve primary care delivery for adults and adolescents in the developing world: a critical analysis of Integrated Management of Adolescent and Adult Illness (IMAI) 
BMC Medicine  2014;12:6.
More than three decades after the 1978 Declaration of Alma-Ata enshrined the goal of ‘health for all’, high-quality primary care services remain undelivered to the great majority of the world’s poor. This failure to effectively reach the most vulnerable populations has been, in part, a failure to develop and implement appropriate and effective primary care delivery models. This paper examines a root cause of these failures, namely that the inability to achieve clear and practical consensus around the scope and aims of primary care may be contributing to ongoing operational inertia. The present work also examines integrated models of care as a strategy to move beyond conceptual dissonance in primary care and toward implementation. Finally, this paper examines the strengths and weaknesses of a particular model, the World Health Organization’s Integrated Management of Adolescent and Adult Illness (IMAI), and its potential as a guidepost toward improving the quality of primary care delivery in poor settings.
Integration and integrated care may be an important approach in establishing a new paradigm of primary care delivery, though overall, current evidence is mixed. However, a number of successful specific examples illustrate the potential for clinical and service integration to positively impact patient care in primary care settings. One example deserving of further examination is the IMAI, developed by the World Health Organization as an operational model that integrates discrete vertical interventions into a comprehensive delivery system encompassing triage and screening, basic acute and chronic disease care, basic prevention and treatment services, and follow-up and referral guidelines. IMAI is an integrated model delivered at a single point-of-care using a standard approach to each patient based on the universal patient history and physical examination. The evidence base on IMAI is currently weak, but whether or not IMAI itself ultimately proves useful in advancing primary care delivery, it is these principles that should serve as the basis for developing a standard of integrated primary care delivery for adults and adolescents that can serve as the foundation for ongoing quality improvement.
As integrated primary care is the standard of care in the developed world, so too must we move toward implementing integrated models of primary care delivery in poorer settings. Models such as IMAI are an important first step in this evolution. A robust and sustained commitment to innovation, research and quality improvement will be required if integrated primary care delivery is to become a reality in developing world.
PMCID: PMC3895758  PMID: 24423387
Primary care; Integrated management; Integration; Quality improvement; Health care delivery; Health systems; IMAI
7.  Effect of a Community-Based Nursing Intervention on Mortality in Chronically Ill Older Adults: A Randomized Controlled Trial 
PLoS Medicine  2012;9(7):e1001265.
Kenneth Coburn and colleagues report findings from a randomized trial evaluating the effects of a complex nursing intervention on mortality risk among older individuals diagnosed with chronic health conditions.
Improving the health of chronically ill older adults is a major challenge facing modern health care systems. A community-based nursing intervention developed by Health Quality Partners (HQP) was one of 15 different models of care coordination tested in randomized controlled trials within the Medicare Coordinated Care Demonstration (MCCD), a national US study. Evaluation of the HQP program began in 2002. The study reported here was designed to evaluate the survival impact of the HQP program versus usual care up to five years post-enrollment.
Methods and Findings
HQP enrolled 1,736 adults aged 65 and over, with one or more eligible chronic conditions (coronary artery disease, heart failure, diabetes, asthma, hypertension, or hyperlipidemia) during the first six years of the study. The intervention group (n = 873) was offered a comprehensive, integrated, and tightly managed system of care coordination, disease management, and preventive services provided by community-based nurse care managers working collaboratively with primary care providers. The control group (n = 863) received usual care. Overall, a 25% lower relative risk of death (hazard ratio [HR] 0.75 [95% CI 0.57–1.00], p = 0.047) was observed among intervention participants with 86 (9.9%) deaths in the intervention group and 111 (12.9%) deaths in the control group during a mean follow-up of 4.2 years. When covariates for sex, age group, primary diagnosis, perceived health, number of medications taken, hospital stays in the past 6 months, and tobacco use were included, the adjusted HR was 0.73 (95% CI 0.55–0.98, p = 0.033). Subgroup analyses did not demonstrate statistically significant interaction effects for any subgroup. No suspected program-related adverse events were identified.
The HQP model of community-based nurse care management appeared to reduce all-cause mortality in chronically ill older adults. Limitations of the study are that few low-income and non-white individuals were enrolled and implementation was in a single geographic region of the US. Additional research to confirm these findings and determine the model's scalability and generalizability is warranted.
Trial Registration NCT01071967
Please see later in the article for the Editors' Summary
Editors' Summary
In almost every country in the world, the proportion of people aged over 60 years is growing faster than any other age group because of increased life expectancy. This demographic change has several implications for public health, especially as older age is a risk factor for many chronic diseases—diseases of long duration and generally slow progression. Chronic diseases, such as heart disease, stroke, cancer, chronic respiratory diseases, and diabetes, are by far the leading cause of death in the world, representing almost two-thirds of all deaths. Therefore in most countries, the challenge of managing increasingly ageing populations who have chronic illnesses demands an urgent response and countries such as the United States are actively researching possible solutions.
Why Was This Study Done?
Some studies suggest that innovations in chronic disease management that are led by nurses may help address the epidemic of chronic diseases by increasing the quality and reducing the cost of care. However, to date, reports of the evaluation of such interventions lack rigor and do not provide evidence of improved long-term health outcomes or reduced health care costs. So in this study, the researchers used the gold standard of research, a randomized controlled trial, to examine the impact of a community-based nurse care management model for older adults with chronic illnesses in the United States as part of a series of studies supported by the Centers for Medicare and Medicaid Services.
What Did the Researchers Do and Find?
The researchers recruited eligible patients aged 65 years and over with heart failure, coronary heart disease, asthma, diabetes, hypertension, and/or hyperlipidemia who received traditional Medicare—a fee for service insurance scheme in which beneficiaries can choose to receive their care from any Medicare provider—from participating primary care practices in Pennsylvania. The researchers then categorized patients according to their risk on the basis of several factors including the number of chronic diseases each individual had before randomizing patients to receive usual care or the nurse-led intervention. The intervention included an individualized plan comprising education, symptom monitoring, medication, counseling for adherence, help identifying, arranging, and monitoring community health and social service referrals in addition to group interventions such as weight loss maintenance and exercise classes. The researchers checked whether any participating patients had died by using the online Social Security Death Master File. Then the researchers used a statistical model to calculate the risk of death in both groups.
Of the 1,736 patients the researchers recruited into the trial, 873 were randomized to receive the intervention and 863 were in the control group (usual care). The researchers found that 86 (9.9%) participants in the intervention group and 111 (12.9%) participants in the control group died during the study period, representing a 25% lower relative risk of death among the intervention group. However, when the researchers considered other factors, such as sex, age group, primary diagnosis, perceived health, number of medications taken, hospital stays in the past 6 months, and tobacco use in their statistical model, this risk was slightly altered—0.73 risk of death in the intervention group.
What Do These Findings Mean?
These findings suggest that that community-based nurse care management is associated with a reduction in all-cause mortality among older adults with chronic illnesses who are beneficiaries of the fee for service Medicare scheme in the United States. These findings also support the important role of nurses in improving health outcomes in this group of patients and show the feasibility of implementing this program in collaboration with primary care practices. Future research is needed to test the adaptability, scalability, and generalizability of this model of care.
Additional Information
Please access these Web sites via the online version of this summary at
This study is further discussed in a PLoS Medicine Perspective by Arlene Bierman
Information about the Centers for Medicare and Medicaid Services is available
The World Health Organization provides statistics on the prevalence of both chronic illness and ageing
Heath Quality Partners provide information about the study
PMCID: PMC3398966  PMID: 22815653
8.  Why integrated care? Conclusions from an international expert survey 
Exploring the indicators most crucial for actors in health and social care services and identifying those which lead up to the initiation and implementation of integrated care. By analysing the reasons why integrated care is chosen and initiated, the underlying mechanisms and decision-making processes of integrated care are highlighted.
Even though integrated care projects and programmes are implemented in very different settings and health systems one can find the same main actors everywhere. They share similar goals and principles which are universal and not unique to one specific country or system. Hence, it is likely that the type of actor, i.e. health insurance, is more influential on the decision-making process than the health system and surrounding setting. In other words, it was stipulated that a health insurer in the Netherlands will have similar priorities for integrated care as a health insurer in Singapore and hence will choose similar integrated care approaches.
On the other hand, system administrators can strongly incentivise or discourage innovation and cooperation within the health and social care dominions, i.e. by passing laws or (re)organising the financing system. It is suggested that integrated care is implemented more widely in countries where stakeholders receive targeted incentives and fragmentation within the system is less pronounced.
The hypotheses were tested using an international expert questionnaire, contacting integrated care managers and decision-makers in Europe, North America and Australasia. The results were quantitatively analyzed using SPSS.
Results and conclusions
Integrated care is stipulated to offer solutions to the demographic changes, the concurring increase of chronic disease and the pressures on restricted resources experienced in the modern health systems of today. The survey conducted suggested a more diversified picture regarding the expectations and priorities set into the concept by health care decision-makers. While all of these challenges are perceived by them, their undisputed priority is on the introduction and enhancement of management structures on all levels. They do not value financial restrictions as severely as may have been anticipated and they revealed that neither active patient participation nor the introduction of outcome measurement are high priorities when introducing integrated care. The findings also suggest that the same stakeholders follow similar priorities disregarding the different health systems they act in.
In conclusion, two levels of priority setting have been identified as highly important for integrated care initiation: on the policy level, prioritisation of integrated care along with specific promotion measures influence decision-making; on the organisational level, the need for clear structures and better management tools both in the organisation itself and in the management of the targeted patient population, reflect the highest priorities for the decision-making process.
The response rate was 18% with the majority of responses coming from Germany, The Netherlands, UK and the USA.
Integrated care has come a long way from the first projects implemented by health insurance organisations to a colourful array of projects and permanent programmes, spanning from local to national level and from very targeted to very broad inclusion criteria, initiated, owned and financed by a mix of all stakeholders and agents in the system. Hence, integrated care developed into a ‘Jack-of-all-trades’ approach, stimulating change and confusion at the same time. Still, in most countries, it has not entered mainstream health care organisation and management and continues to struggle in proving its value. Asking why integrated care is initiated and implemented in the first place helps understand the priorities and objectives of decision-makers in health care, and hence can lead to a more targeted development and application of integrated care models.
PMCID: PMC3184810
decision-making; priority setting in integrated care; stakeholder-specific differences
9.  Lessons from international experiences: comparative case studies of integrated care in Europe and North America 
An extensive body of literature deals with the complexity of providing integrated care to frail patients. However, theoretical fragmentation and a lack of substantial knowledge about success factors still abound.
To identify environmental conditions and configurations of factors associated with service delivery success in integrated care initiatives.
Theory and methods
Building on the frameworks of Leutz (1999), Kodner and Spreeuwenberg (2002), and Wagner (1998), we suggest a conceptual framework involving elements at the macro, meso, and micro level: context, transition management culture, organization model, and operational means. We carried out a comprehensive literature review on the most diffuse integrated care strategies in Europe and North America. We then selected, on the basis of the maximum environmental differences criterion, four case studies (Canada, US, Italy and Switzerland) and analysed them through the lens of our proposed conceptual framework. Where data were lacking, interviews were conducted with personnel involved in the initiatives.
Results and conclusion
The success of integrated care initiatives does not result from the mere technical intensity of integration. Rather, success stems from the correct matching of the implemented operating means (micro level) with contextual, cultural and organizational factors.
The analysis infers from a small purposive sample. Generalization of findings calls for additional cases operating in diverse contexts.
PMCID: PMC3184817
integrated care; service coordination; population ageing; international comparison; frailty
10.  Integrated care requires integrated supervision 
Given recent developments in integrated care, it is becoming increasingly important for the Dutch Health Care Inspectorate to direct its supervision in a way that may help speed up the implementation of integrated care.
Description of care practice
Since the implementation of integrated care for chronic patients is facing obstacles, alternative methods are required to ensure that the implementation process does not run into any delays. By applying a risk-based approach to integrated care providers, the Inspectorate can analyse the care providers' performance by means of quality indicators and rank them. In order to be effective, appropriated supervision arrangements will be applied to the care providers of integrated care.
With a ranking model transparency will be improved and this may encourage integrated care providers to strive for greater quality due to the competition inherent in the system. Supervision based on advice and encouragement might be helpful in the implementation of integrated care.
Integrated care also requires integrated supervision, which means the Inspectorate may have to reconsider its working methods and the composition of its inspection teams.
PMCID: PMC3107092  PMID: 21637707
inspectorate; external supervision; integrated care
11.  Transforming Singapore's healthcare delivery system: health care integration in Singapore 
The vision for transforming healthcare delivery in Singapore is to develop integrated Regional Health Services (RHS) to provide healthcare from prevention to palliation. Under the RHS concept, each region would be anchored by an acute-care hospital working in close partnership with other healthcare providers in the region, e.g. general physicians (GPs), polyclinics, community hospitals (CHs), nursing homes (NHs) and home care providers. Formalized partnerships, integrated clinical pathways and care coordinators working with a multi-disciplinary team over the patient's lifetime would help keep the care continuous, seamless and appropriate. Achieving this vision will require us to (i) significantly build up the ILTC and primary care sectors; and (ii) restructure our public healthcare system and strengthen the enablers and linkages between providers in each region to better integrate care and enable the entire system to work as it should.
Agency for integrated care
A key part of achieving this vision is the development of a national care integrator: the Agency for Integrated Care (AIC). Formed in 2008, the AIC coordinates referrals to intermediate and long-term care services as well as facilitates discharge planning for patients discharged from acute-care hospitals through hospital-based ACTION Teams. To support the development of integrated RHS, its role will be expanded progressively to include a focus on developing the capabilities of local healthcare service providers as well as patient education. (Please see separate item presented by AIC that will focus on the work of the ACTION Teams—to show that ACTION teams through care coordination helps to reduce Average Length of Stay (ALOS) in acute settings, foster interagency collaboration and improve access to services for patients.)
In Singapore as in other countries, we face the twin challenges of an aging population and the growing burden burden of chronic disease. The current model of acute-care centered provision of healthcare has to transform and new services and linkages need to be developed to cater for the health needs of the elderly population and improve overall population health.
Data Sources
MOH/healthcare providers.
Case description
Development of integrated Regional Health Services.
Implementation of an integrated RHS model and challenges.
PMCID: PMC2807102
Singapore; healthcare delivery system; transformation
12.  Getting better at chronic care in remote communities: study protocol for a pragmatic cluster randomised controlled of community based management 
BMC Public Health  2012;12:1017.
Prevalence and incidence of diabetes and other common comorbid conditions (hypertension, coronary heart disease, renal disease and chronic lung disease) are extremely high among Indigenous Australians. Recent measures to improve quality of preventive care in Indigenous community settings, while apparently successful at increasing screening and routine check-up rates, have shown only modest or little improvements in appropriate care such as the introduction of insulin and other scaled-up drug regimens in line with evidence-based guidelines, together with support for risk factor reduction. A new strategy is required to ensure high quality integrated family-centred care is available locally, with continuity and cultural safety, by community-based care coordinators with appropriate system supports.
The trial design is open parallel cluster randomised controlled trial. The objective of this pragmatic trial is to test the effectiveness of a model of health service delivery that facilitates integrated community-based, intensive chronic condition management, compared with usual care, in rural and remote Indigenous primary health care services in north Queensland. Participants are Indigenous adults (aged 18–65 years) with poorly controlled diabetes (HbA1c>=8.5) and at least one other chronic condition. The intervention is to employ an Indigenous Health Worker to case manage the care of a maximum caseload of 30 participants. The Indigenous Health Workers receive intensive clinical training initially, and throughout the study, to ensure they are competent to coordinate care for people with chronic conditions. The Indigenous Health Workers, supported by the local primary health care (PHC) team and an Indigenous Clinical Support Team, will manage care, including coordinating access to multidisciplinary team care based on best practice standards. Allocation by cluster to the intervention and control groups is by simple randomisation after participant enrolment. Participants in the control group will receive usual care, and will be wait-listed to receive a revised model of the intervention informed by the data analysis. The primary outcome is reduction in HbA1c measured at 18 months. Implementation fidelity will be monitored and a qualitative investigation (methods to be determined) will aim to identify elements of the model which may influence health outcomes for Indigenous people with chronic conditions.
This pragmatic trial will test a culturally-sound family-centred model of care with supported case management by IHWs to improve outcomes for people with complex chronic care needs. This trial is now in the intervention phase.
Trial registration
Australian New Zealand Clinical Trials Registry ACTR12610000812099
PMCID: PMC3519682  PMID: 23170964
Aboriginal and Torres Strait Islander; Diabetes; Indigenous Health Worker; Partnerships; HbA1c control
13.  Evaluating the integration of chronic disease prevention and management services into primary health care 
The increasing number of patients with chronic diseases represents a challenge for health care systems. The Chronic Care Model suggests a multi-component remodelling of chronic disease services to improve patient outcomes. To meet the complex and ongoing needs of patients, chronic disease prevention and management (CDPM) has been advocated as a key feature of primary care producing better outcomes, greater effectiveness and improved access to services compared to other sectors. The objective of this study is to evaluate the adaptation and implementation of an intervention involving the integration of chronic disease prevention and management (CDPM) services into primary health care.
The implementation of the intervention will be evaluated using descriptive qualitative methods to collect data from various stakeholders (decision-makers, primary care professionals, CDPM professionals and patients) before, during and after the implementation. The evaluation of the effects will be based on a combination of experimental designs: a randomized trial using a delayed intervention arm (n = 326), a before-and-after design with repeated measures (n = 163), and a quasi-experimental design using a comparative cohort (n = 326). This evaluation will utilize self-report questionnaires measuring self-efficacy, empowerment, comorbidity, health behaviour, functional health status, quality of life, psychological well-being, patient characteristics and co-interventions. The study will take place in eight primary care practices of the Saguenay region of Quebec (Canada). To be included, patients will have to be referred by their primary care provider and present at least one of the following conditions (or their risk factors): diabetes, cardiovascular diseases, chronic obstructive pulmonary disease, asthma. Patients presenting serious cognitive problems will be excluded.
In the short-term, improved patient self-efficacy and empowerment are expected. In the mid-term, we expect to observe an improvement in health behaviour, functional health status, quality of life and psychological well-being. At the organizational level, the project should lead to coordinated service delivery, improved patient follow-up mechanisms and enhanced interprofessional collaboration. Integration of CDPM services at the point of care in primary care practices is a promising innovation in care delivery that needs to be thoroughly evaluated.
Trial registration Identifier: NCT01319656
PMCID: PMC3637600  PMID: 23565674
14.  The CareWell-primary care program: design of a cluster controlled trial and process evaluation of a complex intervention targeting community-dwelling frail elderly 
BMC Family Practice  2012;13:115.
With increasing age and longevity, the rising number of frail elders with complex and numerous health-related needs demands a coordinated health care delivery system integrating cure, care and welfare. Studies on the effectiveness of such comprehensive chronic care models targeting frail elders show inconclusive results. The CareWell-primary care program is a complex intervention targeting community-dwelling frail elderly people, that aims to prevent functional decline, improve quality of life, and reduce or postpone hospital and nursing home admissions of community dwelling frail elderly.
The CareWell-primary care study includes a (cost-) effectiveness study and a comprehensive process evaluation. In a one-year pragmatic, cluster controlled trial, six general practices are non-randomly recruited to adopt the CareWell-primary care program and six control practices will deliver ‘care as usual’. Each practice includes a random sample of fifty frail elders aged 70 years or above in the cost-effectiveness study. A sample of patients and informal caregivers and all health care professionals participating in the CareWell-primary care program are included in the process evaluation. In the cost-effectiveness study, the primary outcome is the level of functional abilities as measured with the Katz-15 index. Hierarchical mixed-effects regression models / multilevel modeling approach will be used, since the study participants are nested within the general practices. Furthermore, incremental cost-effectiveness ratios will be calculated as costs per QALY gained and as costs weighed against functional abilities. In the process evaluation, mixed methods will be used to provide insight in the implementation degree of the program, patients’ and professionals’ approval of the program, and the barriers and facilitators to implementation.
The CareWell-primary care study will provide new insights into the (cost-) effectiveness, feasibility, and barriers and facilitators for implementation of this complex intervention in primary care.
Trial registration
The CareWell-primary care study is registered in the Protocol Registration System: NCT01499797
PMCID: PMC3527269  PMID: 23216685
Frail elderly; Complex intervention; Integrated care; Functional status; Cost-effectiveness; Implementation; Process evaluation; Primary care
15.  Ten years of integrated care: backwards and forwards. The case of the province of Québec, Canada 
International Journal of Integrated Care  2011;11(Special 10th Anniversary Edition):e004.
Québec’s rapidly growing elderly and chronically ill population represents a major challenge to its healthcare delivery system, attributable in part to the system’s focus on acute care and fragmented delivery.
Description of policy practice
Over the past few years, reforms have been implemented at the provincial policy level to integrate hospital-based, nursing home, homecare and social services in 95 catchment areas. Recent organizational changes in primary care have also resulted in the implementation of family medicine groups and network clinics. Several localized initiatives were also developed to improve integration of care for older persons or persons with chronic diseases.
Conclusion and discussion
Québec has a history of integration of health and social services at the structural level. Recent evaluations of the current reform show that the care provided by various institutions in the healthcare system is becoming better integrated. The Québec health care system nevertheless continues to face three important challenges in its management of chronic diseases: implementing the reorganization of primary care, successfully integrating primary and secondary care at the clinical level, and developing effective governance and change management.
Efforts should focus on strengthening primary care by implementing nurse practitioners, developing a shared information system, and achieving better collaboration between primary and secondary care.
PMCID: PMC3111887  PMID: 21677842
integrated care; health care system; chronic disease; health policy; Quebec/Canada
16.  Effect of integrated care for sick listed patients with chronic low back pain: economic evaluation alongside a randomised controlled trial 
Objective To evaluate the cost effectiveness, cost utility, and cost-benefit of an integrated care programme compared with usual care for sick listed patients with chronic low back pain.
Design Economic evaluation alongside a randomised controlled trial with 12 months’ follow-up.
Setting Primary care (10 physiotherapy practices, one occupational health service, one occupational therapy practice) and secondary care (five hospitals) in the Netherlands, 2005-9.
Participants 134 adults aged 18-65 sick listed because of chronic low back pain: 66 were randomised to integrated care and 68 to usual care.
Interventions Integrated care consisted of a workplace intervention based on participatory ergonomics, with involvement of a supervisor, and a graded activity programme based on cognitive behavioural principles. Usual care was provided by general practitioners and occupational physicians according to Dutch guidelines.
Main outcome measures The primary outcome was duration until sustainable return to work. The secondary outcome was quality adjusted life years (QALYs), measured using EuroQol.
Results Total costs in the integrated care group (£13 165, SD £13 600) were significantly lower than in the usual care group (£18 475, SD £13 616). Cost effectiveness planes and acceptability curves showed that integrated care was cost effective compared with usual care for return to work and QALYs gained. The cost-benefit analyses showed that every £1 invested in integrated care would return an estimated £26. The net societal benefit of integrated care compared with usual care was £5744.
Conclusions Implementation of an integrated care programme for patients sick listed with chronic low back pain has a large potential to significantly reduce societal costs, increase effectiveness of care, improve quality of life, and improve function on a broad scale. Integrated care therefore has large gains for patients and society as well as for employers.
PMCID: PMC2995018  PMID: 21118874
17.  Progress toward integrating care for seniors in Canada 
International Journal of Integrated Care  2011;11(Special 10th Anniversary Edition):e016.
Integrating care is a developing feature of provincial health delivery in Canada for those with chronic conditions. The purposes of this project were to review the conceptual understandings underlying integrated care, examine the features of models of cost-effective care for the elderly, and then ascertain to what extent Canadian provinces were implementing these features.
These goals were accomplished through a review of the integrated care literature followed by a survey of the Canadian provinces. A pretested questionnaire was sent to each of the 10 provincial Ministries of Health in 2008. The questionnaire collected basic background information and then asked a series of open- and close-ended questions about each of the best practice features of integrated care as found in the literature review.
System improvements in integrating care for the elderly are being implemented in Canadian provincial health care systems. There has been substantial improvement in the delivery of case management services but the supply of some community services could be improved. As well, the linkages amongst primary, acute and community care remain weak.
Discussion and conclusion
Providing an adequate supply of services is an ongoing issue in many provinces and could be the result of either inadequate funding and/or poor targeting of scarce resources. While it is promising that so many provinces are starting to break down the silos amongst types of health care service providers, much remains to be accomplished. These issues are at the core of integrating care and are among the challenges being faced by other countries.
PMCID: PMC3111885  PMID: 21677847
integration progress; seniors; Canada
18.  A qualitative study of stakeholder views on the effects of provider payment on cooperation, quality of care and cost-containment in integrated stroke care 
Stroke services are a form of integrated care which have been introduced in many countries, including the Netherlands, to improve health outcomes and processes of care by connecting the acute, rehabilitative, and chronic phases of stroke care. Limited research exists on the effects of payment systems on the functioning of integrated care services from the perspectives of those involved in providing, planning and contracting the care. This qualitative study identified stakeholder views on i) challenges in integrated stroke care associated with fee-for-service systems; ii) other possible financing models for stroke care, and iii) challenges in the implementation of an integrated financing mechanism for stroke care.
Twenty-four participants were interviewed using face-to-face audio-recorded semi-structured interviews. Respondents were purposively selected from five stakeholder groups; care providers, health care managers, health insurers, experts and patient representatives. Transcribed data were coded and analysed to generate themes relating to the study aims.
Respondents mentioned the following challenges associated with the current fee-for-service system; inappropriate incentives for cooperation, efficiency and improving quality and the inability to exert steering power at the level of the stroke service. In addition, care is not patient-centred and the financing system is inflexible.
The respondents mentioned several solutions for the challenges, but there was no consensus amongst them. Regarding the implementation of integrated financing, respondents mentioned the following general challenges; a) the foundations of the financing system are incompatible with integrated financing, b) co-morbidity and c) the lack of evidence on the effect of integrated financing. Stroke-specific challenges were; a) the diverse patient population, b) a non-uniform care trajectory, c) unclear division of responsibility for the overall care and d) different stages of development among stroke services.
This study provides new knowledge on stakeholder perception of the effect of payment systems and financial incentives on cooperation processes, quality of care and cost-containment in integrated stroke care. The results show that fee-for-service does not provide the right incentives for the integration of stroke care. We recommend to perform financial experiments for integrated stroke care.
PMCID: PMC3623662  PMID: 23557401
Integrated care; Stroke; Payment system; Incentive; Fee-for-service; Cooperation
19.  Brief cognitive behavioral therapy in primary care: a hybrid type 2 patient-randomized effectiveness-implementation design 
Despite the availability of evidence-based psychotherapies for depression and anxiety, they are underused in non-mental health specialty settings such as primary care. Hybrid effectiveness-implementation designs have the potential to evaluate clinical and implementation outcomes of evidence-based psychotherapies to improve their translation into routine clinical care practices.
This protocol article discusses the study methodology and implementation strategies employed in an ongoing, hybrid, type 2 randomized controlled trial with two primary aims: (1) to determine whether a brief, manualized cognitive behavioral therapy administered by Veterans Affairs Primary Care Mental Health Integration program clinicians is effective in treating depression and anxiety in a sample of medically ill (chronic cardiopulmonary diseases) primary care patients and (2) to examine the acceptability, feasibility, and preliminary outcomes of a focused implementation strategy on improving adoption and fidelity of brief cognitive behavioral therapy at two Primary Care-Mental Health Integration clinics. The study uses a hybrid type 2 effectiveness/implementation design to simultaneously test clinical effectiveness and to collect pilot data on a multifaceted implementation strategy that includes an online training program, audit and feedback of session content, and internal and external facilitation. Additionally, the study engages the participation of an advisory council consisting of stakeholders from Primary Care-Mental Health Integration, as well as regional and national mental health leaders within the Veterans Administration. It targets recruitment of 320 participants randomized to brief cognitive behavioral therapy (n = 200) or usual care (n = 120). Both effectiveness and implementation outcomes are being assessed using mixed methods, including quantitative evaluation (e.g., intent-to-treat analyses across multiple time points) and qualitative methods (e.g., focus interviews and surveys from patients and providers). Patient-effectiveness outcomes include measures of depression, anxiety, and physical health functioning using blinded independent evaluators. Implementation outcomes include patient engagement and adherence and clinician brief cognitive behavioral therapy adoption and fidelity.
Hybrid designs are needed to advance clinical effectiveness and implementation knowledge to improve healthcare practices. The current article describes the rationale and challenges associated with the use of a hybrid design for the study of brief cognitive behavioral therapy in primary care. Although trade-offs exist between scientific control and external validity, hybrid designs are part of an emerging approach that has the potential to rapidly advance both science and practice.
Trial registration
NCT01149772 at
PMCID: PMC3503767  PMID: 22784436
Primary care; Hybrid effectiveness-implementation designs; Cognitive behavioral therapy; Mental health; Veterans; Anxiety; Depression
20.  Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research 
PLoS Medicine  2013;10(6):e1001473.
In a systematic review of qualitative research, Katie Gallacher and colleagues examine the evidence related to treatment burden after stroke from the patient perspective.
Please see later in the article for the Editors' Summary
Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.
Methods and Findings
The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.
Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
Systematic Review Registration
International Prospective Register of Systematic Reviews CRD42011001123
Please see later in the article for the Editors' Summary
Editors' Summary
Every year, 15 million people have a stroke. About 5 million of these people die within a few days, and another 5 million are left disabled. Stroke occurs when the blood supply of the brain is suddenly interrupted by a blood vessel in the brain being blocked by a blood clot (ischemic stroke) or bursting (hemorrhagic stroke). Deprived of the oxygen normally carried to them by the blood, the brain cells near the blockage die. The symptoms of stroke depend on which part of the brain is damaged but include sudden weakness or paralysis along one side of the body, vision loss in one or both eyes, and confusion or trouble speaking or understanding speech. Anyone experiencing these symptoms should seek immediate medical attention because prompt treatment can limit the damage to the brain. In the longer term, post-stroke rehabilitation can help individuals overcome the physical disabilities caused by stroke, and drugs that thin the blood, reduce blood pressure and reduce cholesterol (major risk factors for stroke) alongside behavioral counseling can reduce the risk of a second stroke.
Why Was This Study Done?
Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient. The term “treatment burden” describes the self-care practices that patients with stroke and other chronic diseases must perform to follow the complicated management strategies that have been developed for these conditions. Unfortunately, treatment burden can overwhelm patients. They may be unable to cope with the multiple demands placed on them by health-care providers and systems for their self-care, a situation that leads to poor adherence to therapies and poor outcomes. For example, patients may find it hard to complete all the exercises designed to help them regain full movement of their limbs after a stroke. Treatment burden has been poorly examined in relation to stroke. Here, the researchers identify and describe the treatment burden in stroke by undertaking a systematic review (a study that uses predefined criteria to identify all the literature on a given topic) of qualitative studies on the patient experience of stroke management. Qualitative studies collect non-quantitative data so, for example, a qualitative study on stroke treatment might ask people how the treatment made them feel whereas a quantitative study might compare clinical outcomes between those receiving and not receiving the treatment.
What Did the Researchers Do and Find?
The researchers identified 69 qualitative studies dealing with the experiences of stroke management of adult patients and analyzed the data in these papers using framework synthesis—an approach that divides data into thematic categories. Specifically, the researchers used a coding framework informed by normalization process theory, a sociological theory of the implementation, embedding and integration of tasks and practices; embedding is the process of making tasks and practices a routine part of everyday life and integration refers to sustaining these embedded practices. The researchers identified four main areas of treatment burden for stroke: making sense of stroke management and planning care; interacting with others, including health care professionals, family and other patients with stroke; enacting management strategies (including enduring institutional admissions, managing stroke in the community, reintegrating into society and adjusting to life after stroke); and reflecting on management to make decisions about self-care. Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with health-care providers, and unsatisfactory inpatient care.
What Do These Findings Mean?
These findings show that stroke management is extremely demanding for patients and is influenced by both the micro and macro organization of health services. At the micro organizational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organize their care and develop coping strategies, which makes adherence to management strategies less likely. At the macro organizational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community. Overall, these findings suggest that care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritized. Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases. By undertaking such work, it should be possible to generate a patient-reported outcome measure of treatment burden that, if used by policy makers and health-care providers, has the potential to improve the quality of stroke care.
Additional Information
Please access these Web sites via the online version of this summary at
The US National Institute of Neurological Disorders and Stroke provides information about all aspects of stroke (in English and Spanish); its Know Stroke site provides educational materials about stroke prevention, treatment, and rehabilitation including personal stories (in English and Spanish); the US National Institutes of Health SeniorHealth website has additional information about stroke
The Internet Stroke Center provides detailed information about stroke for patients, families, and health professionals (in English and Spanish)
The UK National Health Service Choices website also provides information about stroke for patients and their families, including personal stories
MedlinePlus has links to additional resources about stroke (in English and Spanish)
The UK not-for-profit website Healthtalkonline provides personal stories about stroke
Wikipedia provides information on the burden of treatment and on the normalization process theory (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
PMCID: PMC3692487  PMID: 23824703
21.  A qualitative study of community home-based care and antiretroviral adherence in Swaziland 
Antiretroviral therapy (ART) has rendered HIV and AIDS a chronic condition for individuals in many parts of the world. Adherence, however, is integral to achieving chronicity. Studies have shown both relatively high ART adherence rates in sub-Saharan Africa and the importance of community home-based care (CHBC) to facilitating this process. In light of diminished HIV and AIDS funding globally and increased reliance on CHBC throughout Africa, a better understanding of how CHBC may strengthen ART adherence is essential to improving patients’ quality of life, tending to the needs of care supporters and achieving healthier populations.
This article reports findings from a qualitative study of a CHBC organiztion serving an estimated 2500 clients in rural Swaziland. Semi-structured questionnaires with 79 HIV-positive clients [people living with HIV and AIDS (PLWHA)] yielded data on diverse aspects of being HIV positive, including insights on whether and how PLWHA perceived care supporters to facilitate ART adherence in a high stigma and structurally impoverished setting.
Ninety-two percent of participants said their health had improved since care supporters came into their lives. A major finding was that an estimated 53% of participants said they would have died, a few from suicide had the care supporter never intervened. More than one in four participants (27.9%) sought HIV testing after a care supporter began visiting them. Nearly a third (31%) commenced ART after and largely as a consequence of care supporter intervention. Approximately one in four (23%) reported that their care supporter had helped them to disclose their HIV-positive status to family members. Twenty-seven percent said they had felt discouraged or had been discouraged from taking ART by members of their family or community.
General inductive analysis of participant reports suggested two social mechanisms of CHBC impact on ART adherence: (i) cultivating client-care supporter “talk” to enhance treatment uptake and literacy, reduce felt stigma and challenge social pressures to desist from ART and (ii) real-time interactions between clients and care supporters whereby the care “relationship” was itself the “intervention,” providing lay counsel, material and financial assistance, and encouragement when clients suffered stigma, side effects and other obstacles to adherence. These social dynamics of adherence generally fall outside the purview of conventional clinical and public health research.
PLWHA reports of care supporter practices that enabled ART adherence demonstrated the pivotal role that CHBC plays in many PLWHA lives, especially in hard to reach areas. Relative to clinic personnel, care supporters are often intensely engaged in clients’ experiences of sickness, stigma and poverty, rendering them influential in individuals’ decision-making. This influence must be matched with on-going training and support of care supporters, as well as a clear articulation with the formal and informal health sectors, to ensure that PLWHA are correctly counselled and care supporters themselves supported. Overall, findings showed that PLWHA experiences of CHBC should be captured and incorporated into any programme aimed at successfully implementing the Joint United Nations Programme on HIV and AIDS (UNAIDS) Treatment 2.0 agenda Pillar 4 (increasing HIV testing uptake and care linkages) and Pillar 5 (strengthening community mobilization).
PMCID: PMC3794079  PMID: 24107652
Africa; HIV; AIDS; antiretroviral treatment; ART; adherence; stigma; home-based care; chronic disease
22.  Program evaluation of Sea Mar’s Chronic Care Program for Latino and Caucasian patients with type 2 diabetes: providers and staff perspectives 
Problem statement
Unprecedented consumption of health care resources in the USA coupled with increasing rates of chronic disease has fueled pursuit of improved models of health care delivery. The Chronic Care Model provides an organizational framework for chronic care management and practice improvement. Sea Mar, a community health care organization in Washington state, implemented the Chronic Care Model, but has not evaluated the outcomes related to provider and staff satisfaction. The specific aim of this project was to evaluate the effectiveness of the Chronic Care Model with the addition of the Chronic Care Coordinator role.
A descriptive method was used, which incorporated quantitative, and qualitative data from providers and clinic staff collected through a Web-based survey consisting of Likert-type questions sent via an electronic link.
This evaluation identified the strengths of and barriers to the chronic care model with a focus on provider and staff satisfaction regarding patient care since the addition of the Chronic Care Coordinator role. We found a high appreciation (94%) and acceptance of the role; 80% agreed that the Chronic Care Coordinator was well-integrated into clinic operations. Major strengths of the program included more patient education, better follow-up, and improved team communications. Barriers to success included limited provider access, confusion regarding role expectations of the Chronic Care Coordinator, inconsistent communications, and Chronic Care Coordinator turnover.
Our findings help to validate the importance of community health organizations such as Sea Mar, the utility of the chronic care model, and the potential value for specific roles such as the Chronic Care Coordinator to positively impact quality of care by helping to empower patients to improve self-management and ultimately impact patient outcomes. However, future studies involving larger samples are needed to further explore themes among staff and patients.
PMCID: PMC3468164  PMID: 23055743
case manager; chronic care model; program evaluation; type 2 diabetes; Care Coordinator
23.  Just regionalisation: rehabilitating care for people with disabilities and chronic illnesses 
BMC Medical Ethics  2006;7:9.
Regionalised models of health care delivery have important implications for people with disabilities and chronic illnesses yet the ethical issues surrounding disability and regionalisation have not yet been explored. Although there is ethics-related research into disability and chronic illness, studies of regionalisation experiences, and research directed at improving health systems for these patient populations, to our knowledge these streams of research have not been brought together. Using the Canadian province of Ontario as a case study, we address this gap by examining the ethics of regionalisation and the implications for people with disabilities and chronic illnesses. The critical success factors we provide have broad applicability for guiding and/or evaluating new and existing regionalised health care strategies.
Ontario is in the process of implementing fourteen Local Health Integration Networks (LHINs). The implementation of the LHINs provides a rare opportunity to address systematically the unmet diverse care needs of people with disabilities and chronic illnesses. The core of this paper provides a series of composite case vignettes illustrating integration opportunities relevant to these populations, namely: (i) rehabilitation and services for people with disabilities; (ii) chronic illness and cancer care; (iii) senior's health; (iv) community support services; (v) children's health; (vi) health promotion; and (vii) mental health and addiction services. For each vignette, we interpret the governing principles developed by the LHINs – equitable access based on patient need, preserving patient choice, responsiveness to local population health needs, shared accountability and patient-centred care – and describe how they apply. We then offer critical success factors to guide the LHINs in upholding these principles in response to the needs of people with disabilities and chronic illnesses.
This paper aims to bridge an important gap in the literature by examining the ethics of a new regionalisation strategy with a focus on the implications for people with disabilities and chronic illnesses across multiple sites of care. While Ontario is used as a case study to contextualize our discussion, the issues we identify, the ethical principles we apply, and the critical success factors we provide have broader applicability for guiding and evaluating the development of – or revisions to – a regionalised health care strategy.
PMCID: PMC1569849  PMID: 16939654
24.  Implementing and evaluating a program to facilitate chronic disease prevention and screening in primary care: a mixed methods program evaluation 
The objectives of this paper are to describe the planned implementation and evaluation of the Building on Existing Tools to Improve Chronic Disease Prevention and Screening in Primary Care (BETTER 2) program which originated from the BETTER trial. The pragmatic trial, informed by the Chronic Care Model, demonstrated the effectiveness of an approach to Chronic Disease Prevention and Screening (CDPS) involving the use of a new role, the prevention practitioner. The desired goals of the program are improved clinical outcomes, reduction in the burden of chronic disease, and improved sustainability of the health-care system through improved CDPS in primary care.
The BETTER 2 program aims to expand the implementation of the intervention used in the original BETTER trial into communities across Canada (Alberta, Ontario, Newfoundland and Labrador, the Northwest Territories and Nova Scotia). This proactive approach provides at-risk patients with an intervention from the prevention practitioner, a health-care professional. Using the BETTER toolkit, the prevention practitioner determines which CDPS actions the patient is eligible to receive, and through shared decision-making and motivational interviewing, develops a unique and individualized ‘prevention prescription’ with the patient. This intervention is 1) personalized; 2) addressing multiple conditions; 3) integrated through linkages to local, regional, or national resources; and 4) longitudinal by assessing patients over time. The BETTER 2 program brings together primary care providers, policy/decision makers and researchers to work towards improving CDPS in primary care. The target patient population is adults aged 40–65. The reach, effectiveness, adoption, implementation, maintain (RE-AIM) framework will inform the evaluation of the program through qualitative and quantitative methods. A composite index will be used to quantitatively assess the effectiveness of the prevention practitioner intervention. The CDPS actions comprising the composite index include the following: process measures, referral/treatment measures, and target/change outcome measures related to cardiovascular disease, diabetes, cancer and associated lifestyle factors.
The BETTER 2 program is a collaborative approach grounded in practice and built from existing work (i.e., integration not creation). The program evaluation is designed to provide an understanding of issues impacting the implementation of an effective approach for CDPS within primary care that may be adapted to become sustainable in the non-research setting.
PMCID: PMC4194415  PMID: 25293785
Program evaluation; Chronic disease; Prevention; Screening; Clinical practice guidelines
25.  Integrated care: a comprehensive bibliometric analysis and literature review 
Integrated care could not only fix up fragmented health care but also improve the continuity of care and the quality of life. Despite the volume and variety of publications, little is known about how ‘integrated care’ has developed. There is a need for a systematic bibliometric analysis on studying the important features of the integrated care literature.
To investigate the growth pattern, core journals and jurisdictions and identify the key research domains of integrated care.
We searched Medline/PubMed using the search strategy ‘(delivery of health care, integrated [MeSH Terms]) OR integrated care [Title/Abstract]’ without time and language limits. Second, we extracted the publishing year, journals, jurisdictions and keywords of the retrieved articles. Finally, descriptive statistical analysis by the Bibliographic Item Co-occurrence Matrix Builder and hierarchical clustering by SPSS were used.
As many as 9090 articles were retrieved. Results included: (1) the cumulative numbers of the publications on integrated care rose perpendicularly after 1993; (2) all documents were recorded by 1646 kinds of journals. There were 28 core journals; (3) the USA is the predominant publishing country; and (4) there are six key domains including: the definition/models of integrated care, interdisciplinary patient care team, disease management for chronically ill patients, types of health care organizations and policy, information system integration and legislation/jurisprudence.
Discussion and conclusion
Integrated care literature has been most evident in developed countries. International Journal of Integrated Care is highly recommended in this research area. The bibliometric analysis and identification of publication hotspots provides researchers and practitioners with core target journals, as well as an overview of the field for further research in integrated care.
PMCID: PMC4059213  PMID: 24987322
integrated care; bibliometric analysis; delivery of health care; integrated; literature review

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