Dissertations / Theses on the topic 'Care Management for Chronic Conditions'

Objective: The promotion of self-management support for people with LTCs is a health policy priority across the UK (LTCAS 2008; DoH 2012). Self-management support is designed to change and improve care for people with LTCs, who form an increasing proportion of the population requiring healthcare and treatment. For health organisations models of care, which support self-management, require greater emphasis on person-focused rather than disease-focused manifestations of health and represents a new model of care delivery requiring changes in practice. Current research demonstrates that health policies are increasingly complex, involve multiple organisations and often fail to translate into effective practice (Noyles et al. 2014). The deficit between what works and what happens in practice is referred to as the “implementation deficit” (Pressman and Wildasky 1984) and traditionally it has been difficult to breakaway from the idea that the policy process is best viewed from the top-down (Barett and Fudge 1981). However, there remains a need to understand the processes of implementation, which takes account of the variation, the multiple layers and interactions which takes place between policy-maker and -implementer as policy becomes practice (Hupe 2011). Implementation of self-management is a contemporary focus in UK health policy and this thesis explains what processes are used to implement self-management policy for people with LTCs into everyday practice in one health board. Methods: A case study approach was used to investigate the policy process with data collected using thirty-one semi-structured interviews with policy-makers and regional and local policy-implementers plus eight hours of observation of national and regional policy meetings. To provide context to the implementation process data also included thirteen policy documents. Data analysis used the retrospective application of NPT as a theoretical framework with which to explore the implementation processes. NPT is an emerging theory that is being promoted as a means of understanding implementation, embedding and integration of new ideas in healthcare (McEvoy et al. 2014). The application of NPT focuses on four mechanisms, termed work (May and Finch 2009: 547), which promote incorporation of new ideas in practice. These areas of work are coherence, cognitive participation, collective action and reflexive monitoring (Mair et al. 2012). Findings: The findings suggest that there are a number of important influences operating behind or as part of the policy implementation process. These included the need for a shared understanding, getting stakeholders involved to drive forward policy, work promoting collaboration and participation was the most detailed and important in the process of policy implementation; the course of policy was affected by factors which facilitated or inhibited stakeholders acceptance of self-management; and NPT fosters key analytical insights. Conclusion: Understanding the process of policy implementation in healthcare and how practice changes as a result of policy is subject to a wide range of influences. What emerges are five key recommendations relating to understanding policy implementation. (1) understanding the concept of self-management is important in promoting policy implementation. This understanding benefits from dialogue between policy-makers and -implementers. (2) stakeholder involvement supports implementation particularly the role of clinical leadership and leadership through existing networks but also value in establishing new organisational structures to create a receptive context. (3) develop participation and collaboration through use of the patient voice which helped simplify the policy message and motivate change. (4) other resources help policy implementation and where these are evident then policy is implemented and where they are absent then implementation is not embedded. Lack of evidence was a particular area of constraint. (5) NPT has shown that social context is important, and provides for this. But in addition there is evidence that historical perspectives and previous experience are also important influence on receptivity to implementation. This research contributes to the development of theory and practice in the area of implementation science. The exploration of the policy implementation has revealed the action and work which policy-makers and -implementers are engaged in while implementing policy. It has tested the utility of NPT in a real-life setting using all four mechanisms.

Background: Patient empowerment is viewed as a priority by policy makers, patients and practitioners worldwide. Although there are a number of measures available, none have been developed specifically for patients in the UK with long-term conditions. It is the aim of this study to report the development and preliminary validation of an empowerment instrument for patients with long-term conditions in primary care.Methods: The study involved three methods. Firstly, a systematic review was conducted to identify existing empowerment instruments, and to describe, compare and appraise their content and quality. The results supported the need for a new instrument. Item content of existing instruments helped support development of the new instrument. Secondly, empowerment was explored in patients with long-term conditions and primary care practitioners using qualitative methods, to explore its meaning and the factors that support or hinder empowerment. This led to the development of a conceptual model to support instrument development. Thirdly, a new instrument for measuring empowerment in patients with long-term conditions in primary care was developed. A cross-sectional survey of patients was conducted to collect preliminary data on acceptability, reliability and validity, using pre-specified hypotheses based on existing theoretical and empirical work. Results: Nine instruments meeting review inclusion criteria were identified. Only one instrument was developed to measure empowerment in long-term conditions in the context of primary care, and that was judged to be insufficient in terms of content and purpose. Five dimensions (‘identity’, ‘knowledge and understanding’, ‘personal control’, personal decision-making’, and ‘enabling other patients’) of empowerment were identified through published literature and the qualitative work and incorporated into a preliminary version of the new instrument. A postal survey achieved 197 responses (response rate 33%). Almost half of the sample reported circulatory, diabetic or musculoskeletal conditions. Exploratory factor analysis suggested a three factor solution (‘identity’, ‘knowledge and understanding’ and ‘enabling’). Two dimensions of empowerment (‘identity’ and ‘enabling’) and total empowerment showed acceptable levels of internal consistency. The measure showed relationships with external measures (including quality of chronic illness care, self-efficacy and educational qualifications) that were generally supportive of its construct validity.Conclusion: Initial analyses suggest that the new measure meets basic psychometric criteria and has potential for the measurement of patient empowerment in long-term conditions in primary care. The scale may have a role in research on quality of care for long-term conditions, and could function as a patient-reported outcome measure. However, further validation is required before more extensive use of the measure.

Large portions of the US population live in poor inner-city communities. Health needs assessment data have shown that these communities have disproportionately high rates of chronic illnesses. The patient-centered medical home (PCMH) model was developed to address the gaps that exist in the primary care system, and emphasizes a redesign of primary care that is patient centered, utilizes multiple levels of healthcare professionals, information technology, and care coordination. However, little evidence exists on the value of this model which may explain why it has not gained wide acceptance by primary care providers. Therefore, this study was designed to examine the efficacy of the PCMH model through emergency department and inpatient utilization reductions, and with a specific focus on the role of social connectedness. This research used existing data on 706 participants from Columbia University and a local New York inner-city hospital. An in-depth analysis of hospital utilization data, using an unpaired two-sample t-test and linear regression, found that the PCMH framework strengthens continuity of care and care coordination, and helps reduce avoidable hospitalization utilization. Additionally, these reductions were greater for study participants with strong social support networks. This research highlights the relationships between primary care, social support networks, and good health outcomes. Over time, further enhancement of the PCMH and systemic changes to the delivery of care may contribute to the development of a stronger primary care system that place patients at the center of care, focuses on the importance of social connectedness, and contributes to a lasting impact on society through the development of overall healthier communities.

Tratase de parte do Estudo SABE Saúde, Bem Estar e Envelhecimento, de delineamento longitudinal de base populacional que entrevistou 2143 pessoas de 60 anos e mais em 2000, no município de São Paulo, e reentrevistou 1115 delas em 2006. O objetivo do presente estudo foi avaliar a atenção às condições crônicas, utilizando a Hipertensão Arterial Sistêmica e o Diabetes Mellitus como condições traçadoras. Para isso, identificouse o uso e acesso aos serviços de saúde e as práticas de controle dessas doenças. Além disso, observouse a associação do uso de serviços com a ocorrência de desfechos desfavoráveis e compararamse indicadores de atenção à saúde com relação à posse de plano de saúde ou não. Foram utilizados testes estatísticos de regressão logística múltipla. Observouse uma prevalência de Hipertensão Arterial Sistêmica de 53,1 por cento e de Diabetes Mellitus do tipo 2 de 16,8 por cento em 2000, com incidência de autorreferência acumulada no período, de 30,0 por cento e 8,0 por cento respectivamente. O uso de três ou mais consultas por idosos hipertensos e/ou diabéticos em 2006 foi de 80,0 por cento e identificouse associação com os fatores de necessidade e com posse de plano de saúde, indicando desigualdades de acordo com o modelo de Andersen. A cobertura de planos de saúde entre os hipertensos e/ou diabéticos foi de 48,9 por cento em 2006, mantido no período. Foi referida dificuldade em usar serviços de saúde por 28,6 por cento dos hipertensos e/ou diabéticos em 2006, a maior parte relacionada à qualidade percebida dos serviços. Quem tem plano de saúde mostrou menor dificuldade de acesso, menor tempo de espera para agendamento e para ser atendido no serviço e maior satisfação com o uso. No entanto, o uso de serviços para controle foi maior entre os que não referiram posse de plano de saúde. Houve ampliação do acesso medicamentoso no período para ambas as doenças, em particular no setor público, com 70,5 por cento dos diabéticos e 88,4 por cento dos hipertensos usando medicação específica em 2006. Não se encontrou associação entre uso de serviços ambulatoriais nem com AVC, nem com perda de capacidade funcional sendo que, houve associação de posse de plano de saúde apenas com dificuldades em AIVD. Por outro lado, usar serviços ambulatoriais com maior frequência, mostrouse protetor ao risco de morrer. A taxa de mortalidade foi de 48 por mil para os hipertensos e 59,2 por mil para os diabéticos. Em conclusão, as condições crônicas estudadas têm forte impacto no uso de serviços, mas estes mostram pouca influência nos desfechos e sugerem desigualdades no acesso e na qualidade da atenção<br>This is part of the SABE Study Health, Welfare and Aging, a longitudinal study, which interviewed 2143 people, aged 60 and older in 2000, in São Paulo, and reinterviewed 1115 people, in 2006. The aim of this study was to evaluate the care for chronic conditions using Hypertension and Diabetes Mellitus as tracer conditions. For this, use of and access to health services and control practices were identified. Furthermore, association between use of health services and the occurrence of unfavorable outcomes was observed and, indicators of health care between public health and health insurance were compared. Logistic regression was used for multivariate analysis. The prevalence of hypertension was 53.1 per cent and type 2 Diabetes Mellitus was 16.8 per cent in 2000 and the incidence of selfreference accumulated in the period was 30.0 per cent and 8.0 per cent respectively. The use of three or more visits by hypertensive and / or diabetics in 2006 was 80.0 per cent. It was possible to identify an association between health services use and the factors of need and health insurance, indicating inequalities, according to the model of Andersen. The percent of the health insurance of hypertension and / or diabetes was 48.9 per cent in 2006. Difficulty in health services use was referred by 28.6 per cent of hypertensive and / or diabetics in 2006 mostly related to quality of services. Those who have health plan haves less difficulty of access, less waiting time for scheduling and to be serviced and increased satisfaction with use. However, the services use for disease control was higher among those who did not have health insurance and the access to drugs was increased, particularly in the public sector, with 70.5 per cent of diabetics and 88.4 per cent of the patients using drugs in 2006. There was no association between health services use and the incidence of stroke and loss of functional capacity, but the last one was associated with health insurance. On the other hand, an increased use of health services is related with a lower risk of death. Mortality rate was 48 per thousand for hypertensive and 59.2 per thousand for diabetics. In conclusion, the chronic conditions studied have a strong impact on the use of services, but they showed little influence on outcomes and suggest inequalities in access and quality of care

Introdução: Assim como várias outras condições crônicas que, segundo a OMS representarão 78% da carga global das doenças em 2020, o câncer chegou na agenda dos gestores de saúde, provocando-os a pensar em novos modelos de organização do sistema. Modelos onde o foco sai do indivíduo e vai para a população, onde se busca mais do que a cura da doença, mas a melhoria das condições de saúde da população assistida. Por influência do conceito de Organizações Integradas de Saúde (IHCO) desenvolvido por Shortell (EUA), vem de Mendes a base conceitual da Portaria Ministerial de 2010 que estabelece a base para a composição das redes de atenção à saúde onde a população e suas necessidades determinam a oferta e a prestação de serviços especializados. Nas redes temáticas, como a oncológica, os hospitais são pontos de atenção com alta densidade tecnológica, atuando nas condições agudas e nos momentos de agudização das condições crônicas, com o papel de estabelecer diretrizes clínica, gestão da clínica e processos de substituição. A rede oncológica do estado de São Paulo tem sua implantação ocorrendo de acordo com as Portarias ministeriais que determinam os critérios de atendimento e, a partir de 2011, passa a contar com uma estrutura de governança composta por um comitê de referência técnico-científico com participação dos especialistas dos serviços habilitados de maior representatividade e coordenado pelo ICESP, como apoio ao gestor estadual. Objetivo: Estudo da rede oncológica do Sistema Único de Saúde no estado de São Paulo por meio da análise da estrutura da rede instalada e habilitada para tratamento e suas características quanto ao perfil e distribuição dos estabelecimentos, estrutura e serviços disponíveis e produção mínima anual para a manutenção da excelência, utilização da capacidade de produção frente às necessidades epidemiológicas e a produtividade nas modalidades de tratamento oncológico, a saber, cirurgias oncológicas, procedimentos de quimioterapia e radioterapia. Método: Estudo de caso único e integrado. Foram utilizados dados secundários do DATASUS, INCA, RHC e CNES e dados coletados de documentos oficiais do Comitê de Referência em Oncologia do Estado de São Paulo. Utilizados como parâmetros de referência a Portaria SAS/MS n0 140 de 2014, a Portaria GM/MS n0 1101 de 2002, Relatórios de Produção ICESP de 2013 e literatura. Para a análise e interpretação dos dados foi utilizada estatística descritiva por meio de números absolutos, percentagens e medianas. Resultados: De acordo com o CNES, em abril de 2013 estavam habilitados 72 estabelecimentos para atendimento de oncologia no SUS, sendo 16 CACONs, 51 UNACONs e 5 Hospitais Gerais com Cirurgia Oncológica. A maioria eram hospitais gerais, privados não lucrativos, de grande porte e porte especial e com atividades de ensino. Pelo critério populacional, o estado possuía 1 serviço habilitado para cada 581.961 habitantes, distribuídos de forma desigual pelas 17 RRAS, com variações de 1 serviço para 269.373 habitantes a 1 serviço para 2.717.672 habitantes. Com relação à estrutura e serviços disponíveis, 80% dos hospitais estavam em conformidade para cirurgias oncológicas, 31% para quimioterapia e 74% para radioterapia. Em relação à produção mínima, somente 13% dos hospitais estavam conformes em cirurgias oncológicas, 42% em quimioterapia e 14% em radioterapia. Para atender a demanda de cirurgias oncológicas seria necessário utilizar 21% dos leitos cirúrgicos disponíveis nos hospitais e 21% e 26% das salas cirúrgicas eletivas; sobrariam 539 das 901 instaladas para as sessões de quimioterapia e, para radioterapia, sobrariam 49 equipamentos. Na análise da produtividade, para atender a produção 2013 com índices de produtividade do ICESP, seriam necessários 13% dos leitos cirúrgicos, 14% das salas cirúrgicas eletivas, 159 poltronas a mais e 21 equipamentos de radioterapia a menos. Com relação a comparação entre a demanda estimada 2014 e a produção de 2013, observou-se na quimioterapia e radioterapia um percentual maior que 100%, a saber, 292% e 169%, respectivamente. Somente para cirurgias oncológicas a produção foi menor que a demanda estimada com índice de 53%, principalmente nas cirurgias urológicas e dermatologia. Conclusão: A rede instalada apresenta estrutura e tamanho suficiente para atender a demanda de casos novos de câncer, porém há diferenças regionais e ampla variação de produtividade entre os serviços, o que provavelmente impacta no acesso dos pacientes, promove a criação de filas de espera ao mesmo tempo em que há serviços com ociosidade das instalações. Os recursos empregados na rede oncológica seriam melhor utilizados com a adoção de ferramentas de gestão, como a regulação de casos, por exemplo, que auxiliaria na distribuição dos casos de acordo com a demanda, competências instaladas e disponibilidade dos serviços<br>Introduction: Cancer has arrived to the agenda of the health managers, making them wonder about new models for the organization of the system. By influence of the Integrated Health Care Organizations (IHCO) developed by Shortell (USA), the conceptual base for the composition of the Brazilian health care system comes from Mendes, in it the population and its needs determine the offer and the provision of specialized services. The oncology care network of the state of São Paulo has its implantation being done according to the ministerial orders which determine the attendance criteria and, since 2011, it has started having a management structure composed by a committee of technical and scientific reference with the participation of specialists of the enabled services of greater representativity and coordinated by the São Paulo State Cancer Institute (ICESP), with the support of the state manager. Goal: To produce a study on the oncology care network of the São Paulo state public Health System through an analysis of the network structure installed and enabled for the treatment and its characteristics regarding the profile, distribution and structure of the available services and the minimum yearly production for the excellence maintenance, use of production capacity before the epidemiological needs and the productivity concerning the cancer treatment modalities, that is, oncological surgeries, chemotherapy and radiotherapy procedures. Material and Method: Study of one integrated unique case. Secondary data from DATASUS, INCA, RHC and CNES and data collected from official documents of the São Paulo State Oncology Reference Committee. We have used as reference parameters from the Brazilian Ordinance SAS/MS n0 140 of 2014, the GM/MS n0 1101 of 2002 Ordinance, 2013 ICESP Production Reports and literature. For the analysis and interpretation of the data, we have used descriptive statistics through absolute numbers, percentages and averages. Results: According to the Health Establishments Record Center (CNES), in April of 2013, 72 establishments were enabled for the attendance of cancer cases in the Brazilian Public Health System (SUS). According to the population criterium, the state had 1 enabled service for each 581.961 inhabitants, distributed in an uneven way through 17 Health Attention Regional Network Units. Regarding the available structure and services, 80% of the hospitals were in compliance for oncological surgeries, 31% for chemotherapy treatment and 74% for radiology treatment. Regarding the minimum production, only 13% of the hospitals were in compliance for oncological surgeries, 42% for chemotherapy treatment and 14% for radiology treatment. Regarding the productivity analysis, it would be necessary to have extra: 13% of surgical beds, 14% of elective surgical rooms, 159 additional armchairs and 21 radiotherapy equipment less. Concerning the comparison between the estimated demand in 2014 and the production of 2013, we have observed in chemo and radiotherapies a percentage higher than 100%, that is, 292% and 169%, respectively. Only regarding the oncological surgeries the production was smaller than the estimated demand with an index of 53%, mainly concerning the urological surgeries and dermatology. Conclusion: The installed network presented enough proportion and structure to receive the demand of new cases of cancer, although there were local differences and a wide productivity range among services, which probably impacted on the patients\' access, promoted the creation of waiting queues at the same time there were services not being used in the same facilities

The purpose of this project was to design a chronic care plan using the chronic care management (CCM) framework to improve health services at lower healthcare costs. The practice-focused question explored whether the operationalization of the CCM model would impact progress toward the management of chronic illness for the target population of Medicare beneficiaries with 2 or more chronic illnesses in an urban acute care agency located in the western United States. The middle-range theory, logic rational plan model, Lewin’s change theory, and the CCM’s coordination care and collaborative care concepts were used to guide the project. Data were collected from nursing databases and government agencies. Nurses were significant to the CCM reform by supporting the elements for proactive care. Nurse practitioners can bill using the CCM codes, and clinical nurses can performed patient sensitive care. The social changes were patients with chronic illnesses realized a better quality of life at lower health costs.

Chronic conditions are the leading cause of morbidity and mortality in the world. Traditional health care for people suffering from a chronic condition is expensive and consumes significant resources. This Thesis focuses on investigating novel applications of technologies and services to improve the support offered to patients in the self-management of their chronic conditions. A decision support framework for self-management is proposed. It combines three theoretical perspectives: utilizing information gleaned from behavioural, psychological and biological interventions. A personal self-management system (PSMS), developed within SMART2, utilizes such a framework. It facilitates the integration of activity information, self-reporting, vital signs and lifestyle monitoring data. Approaches have been developed and applied to analyse the information collected and provide feedback to the 'patient' to assist with self-management. An orientation free adaptive step detection (OF ASD) algorithm was developed, deployed and evaluated with a smart phone equipped with accelerometers to detect levels of activity in the form of human steps. The advantages of the OF ASD algorithm following evaluation were found to be the self adaptive nature of the approach for each individual and the orientation free notion for smart phone placement. The accuracy and sensitivity of the OF ASD algorithm achieved performance rates of 93.4% and 93.2%, respectively. Furthermore, an approach was considered involving the identification of a patient's health status through self-reporting. Several feature selection and classification methods were evaluated and the optimal combination for the purposes of classification was reported. The results have indicated that a Multi layer Perceptron (MLP) based classifier had the best classification performance on an optimised subset of 10 questions. Based on the study it has found that the analysis of the lifestyle of a patient produces relevant knowledge that can be used to inform and promote behavior change on the part of the patient and to support self-management. Overall, the results from the research have demonstrated that assistive technologies and suitable algorithms have the capability to facilitate self-management for people with chronic conditions.

Evidence for the timing and frequency of monitoring chronic conditions in primary care is often of low quality or absent. Recently, a methodology based upon repeated measures of monitoring tests has been developed to evaluate monitoring strategies which differ by frequency and the length of interval. In studies using this approach, it has been shown that there is potential for substantial over-detection and over-treatment through routine monitoring. The aim of this thesis was to extend the existing methodology to outcomes with highly skewed distributions and tests that are interpreted as dichotomous or categorical states. These methods were applied to find evidence for the intervals of monitoring for microalbuminuria in people with type 1 diabetes and screening for diabetic retinopathy. Statistical models were used to describe the progression of albuminuria and retinopathy and estimate the rates of false positive and false negative tests over time. Simulation was then used to create hypothetical cohorts of people being monitored and screening at different frequencies and for different baseline risk. The impact of changing the timing of tests within the programme was measured and evaluated. The basic framework of the methodology can be usefully extended to tests that have categorical outcome or highly skewed distributions. More frequent monitoring of microalbuminuria in people with type 1 diabetes, and more frequent screening of diabetic retinopathy leads to disproportionate numbers of false positive results and potential over-treatment or referral to specialist services. As with any other clinical intervention, monitoring and screening intervals should be based upon solid evidence. Monitoring for microalbuminuria and screening for diabetic retinopathy less frequently would reduce the rates of false positives tests but the implications of less surveillance need further investigation.

Individuals with ostomies experience extensive changes in health-related quality of life (HRQOL) and daily routine. Patients and families are typically forced to use trial and error to improve self-management.

Managing chronic conditions is seen as the public health challenge of the 21st century. The number of Americans with chronic conditions is expected to rise to 157 million by 2020. Diabetes prevalence and costs contribute to the growing problem. Diabetes was the seventh leading cause of death in 2006. Nationally, the cost of diabetes is expected to be $138 billion in 2020. Diabetes leads to multiple and significant complications. The desired outcomes of management of chronic conditions are improvement in clinical status, avoidance of complications, prevention of co-morbid conditions and avoidance of the costs associated with complications. In the 1990s, disease management programs were implemented in an attempt to effectively manage chronic conditions. The primary approach in these programs focuses on individual-level interventions. Despite these efforts, poor outcomes exist. As a result, other approaches to diabetes management are being explored. This study examines a system-level approach to diabetes management versus an individual level one. The system level approach is based on full implementation of the Chronic Care Model, framed in Social Ecology Theory. This retrospective, non-experimental study explores changes in adherence to select diabetes screening guidelines based on the approach to adopted by two health plans. Analyses were conducted on adherence to LDL, A1c, retinopathy and nephropathy screening 2 ½ years after program implementation. In addition, logistic regression analyses were conducted on the predictive impact of approach to chronic care management in relation to changes in adherence. Other variables known to impact health behaviors were factored into the analysis. There were two main findings of the study. The first is that for each of the screenings, there was a statistically significant difference between participants in the two plans. Comparisons of changes in adherence by approach from before implementation to after implementation resulted in a small number of subjects in some cells which can lead to accepting the null hypothesis when it is false. The second is that approach to management was associated with changes in adherence to three of the four screenings. The logistic models, however, account for less than 23% of the variance in adherence, a moderate effect size.

Abstract Chronic wounds afflict millions worldwide, incurring significant health care costs and chronic suffering. Clinicians are often unsure about treatment, resulting in poor outcomes. Objective To determine the scope of knowledge possessed by fifth year medical students, general practitioners (GP’s) and surgical registrars, concerning chronic wound management. Design Cross sectional study Methods Deans of eight South African medical schools received letters requesting information regarding time devoted to wound-care training. Knowledge-based questionnaires were distributed to final-year students at two universities, surgical registrars at three universities and general practitioners attending refresher courses. Result. Four medical schools replied, of whom only two offered formal teaching. 162 medical students, 45 GP’s and 47 surgical registrars completed questionnaires. The overall median (25th–75th percentiles) knowledge scores for registrars, GP’s and students were 65%;(55%–70%), 55%;(45%–65%) and 45%;(35%–50%) respectively. Whereas the scores of registrars and GP’s did not differ, the student scores were significantly less. Only 32% of registrars and 18% of GP’s attained scores of 70% or more. 96% considered training to be inadequate. Interest in wound-care was only mild to moderate, with more GP’s than registrars requesting literature. Conclusions Very little, if any training on chronic wounds is offered in South Africa. The levels of knowledge cannot be considered adequate for successful treatment, nor for teaching to undergraduates. This preliminary study cannot reflect the attitudes and knowledge throughout the country; however it is clear that there is a need for improved education about these conditions that have huge clinical and economic consequences.

Fifteen percent of adults in the United States have been diagnosed with chronic kidney disease (CKD). CKD is the slow, progressive, and irreversible loss of kidney function. The most effective means of controlling CKD is by managing dietary phosphorus intake. It is important that staff nurses be educated about effective patient education tools to improve dietary phosphorus management. The purpose of this project was to educate primary care nurses about phosphorus management in CKD patients through the introduction of the phosphorus pyramid as a visual tool. The project sought to understand if an educational intervention regarding phosphorus management in CKD patients could increase the primary care nurse's knowledge. The John Hopkins evidence-based practice model informed the development of this project. Ten primary care nurses participated in a 45-minute education program which focused on the use of the Phosphorus Pyramid. A pre and post-test of knowledge was completed via a Likert scale questionnaire that measured knowledge related to the educational objectives of the program. The posttest scores showed an increase of 15% overall in staff's knowledge regarding dietary phosphorus management, the participants were more likely to correctly answer questions related to the phosphorus content of food and drink. The phosphorus pyramid will serve as a user-friendly tool to assist patients in identifying high phosphorus foods that need to be avoided and low phosphorus foods that are recommended to incorporate in their renal diet. This project supports social change by improving the healthcare team's knowledge regarding dietary recommendations for CKD patients thereby contributing to improved patient outcomes and reduced healthcare costs.

Background: Modern health systems are increasingly faced with the challenge to provide effective, affordable and accessible health care for people with chronic conditions. As evidence on the specific unmet needs and their impact on health outcomes is limited, practical research is needed to tailor chronic care to individual needs of patients with diabetes. Qualitative approaches to describe professional and informal caregiving will support understanding the complexity of chronic care. Results are intended to provide practical recommendations to be used for systematic implementation of sustainable chronic care models. Method: A mixed method study was conducted. A standardised survey (n = 92) of experts in chronic care using mail responses to open-ended questions was conducted to analyse existing chronic care programs focusing on effective, problematic and missing components. An expert workshop (n = 22) of professionals and scientists of a European funded research project MANAGE CARE was used to define a limited number of unmet needs and priorities of elderly patients with type 2 diabetes mellitus and comorbidities. This list was validated and ranked using a multilingual online survey (n = 650). Participants of the online survey included patients, health care professionals and other stakeholders from 56 countries. Results: The survey indicated that current care models need to be improved in terms of financial support, case management and the consideration of social care. The expert workshop identified 150 patient needs which were summarised in 13 needs dimensions. The online survey of these pre-defined dimensions revealed that financial issues, education of both patients and professionals, availability of services as well as health promotion are the most important unmet needs for both patients and professionals. Conclusion: The study uncovered competing demands which are not limited to medical conditions. The findings emphasise that future care models need to focus stronger on individual patient needs and promote their active involvement in co-design and implementation. Future research is needed to develop new chronic care models providing evidence-based and practical implications for the regional care setting.

The purpose of this study was to understand the cultural context in which Amish families manage the care of a child with a chronic illness and how it frames the interface with the larger health care delivery system outside their communities. The aims of this study were to describe Amish families' understanding of their children's chronic illnesses, and to describe Amish families' health management and health seeking behaviors for their children within the Amish community and with health services outside their community. Ethnographic research methods were used to paint a cultural portrait of individuals and families, using data sources such as formal and informal interviews with participants, participant observations in the Amish community and family homes, Amish newspapers, and direct observations in health care clinic settings. Informants in this study included Amish families, Amish community members, and health care providers to illustrate commonalities and differences in perspectives on the chronic illness management for children. The study made use of ethnographic analysis, guided by thematic and cultural narrative techniques, to describe Amish family management for children with chronic illnesses in a way that pulls forward how their cultural background is involved in their behaviors and experiences. The results of this study highlight several points: a) the Amish community influences how families understand and appraise concern for their children's illnesses, and families prioritize children's function as a measure of health/illness and see children as ultimately in the hands of God; b) minimal entanglement with the health care community allows for children to be as normalized as possible into the everyday life of the Amish community; c) families prefer to use home remedies to lower costs, potentially prevent the need for health services, and alleviate their child's symptoms in their own homes and community; d) when seeking health services, families prefer treatments they can manage in their homes, health care providers who are knowledgeable about the use of Amish home remedies for their children, and the ability to make health decisions in consideration of the impact to the greater Amish community. To provide culturally competent care for Amish children, this study describes provider competencies needed to understand and accommodate the child's family cultural orientation, values, beliefs, and health care practices into cooperative care planning. One of the most significant attributes for providers to understand when working with Amish families is their collectivist perspective. As collectivists, these families may place the ultimate Amish community goals of believing in God, separation from society, and traditional lifestyle choices over their own when caring for children with chronic illnesses. This is a difficult competency for health care providers who function within a larger medical legal system that requires the placement of individuals above other considerations. It is at the intersection of these two cultures that this study is situated.

Chronic diseases account for about 80\% of the total health care costs in Sweden, where the current health care system is designed according to the characteristics of acute diseases. Chronic care management is characterized by a long-term perspective and inclusion of multiple health care practitioners during the care process. New and more advanced digital health care solutions have emerged due to technology progress followed by increased use of consumer electronics. It creates opportunities to customize and advance health care services. Existing digital health care offerings include functions designed for acute symptoms, and single digital consultation sessions and treatments plans extending over a shorter period of time. There is a significant shortcoming of existing digital health care services for chronic patients, and research is lacking on how to construct such a service. The research was conducted with the digital health care provider Doktor24. The data for the study was both quantitatively and qualitatively collected through collection of existing statistical data and a patient survey, and interviews with patients and medical care personnel. Identified requirements indicate that asthma patients are not satisfied with the current physical asthma care process, where the process today is time-consuming and not particularly adjusted to benefit asthmatics. Patient preferences were summarized in three major aspects; accessibility and time efficiency, a dynamic customized treatment plan and independent self care. Determined functions were digital visits, digital spirometry, notifications and education and information. Together the functions form the basis for a digital chronic care solution for asthma patients. The thesis contributes to research by presenting a unique exploration on the existing opportunities with a patient-centric digital health care service for asthma patients.<br>Kroniska sjukdomar motsvarar idag ungefär 80% av totala sjukvårdskostnaderna i Sverige, där det nuvarande sjukvårdssystemet är utformat utifrån akuta sjukdomar. Kronisk vårdhantering karakteriseras av ett långsiktigt perspektiv, samt av flertalet involverade vårdaktörer. Nya och mer avancerade digitala sjukvårdslösningar har uppstått som ett resultat av teknologiska framsteg samt ett ökat användande av digitala hjälpmedel. Det skapar möjligheter att skräddarsy och utveckla sjukvårdstjänster. Existerande digitala erbjudanden inkluderar funktioner och lösningar för akuta symtom och sjukdomar, och enstaka digitala konsultationer samt behandlingsplaner som sträcker sig över en kortare tidsperiod. Det finns idag en tydlig brist i utbudet av digitala sjukvårdstjänster för kroniskt sjuka. Studien utfördes i samarbete med den digitala sjukvårdsaktören Doktor24. Datainsamlingen inkluderade både kvantitativ och kvalitativ data, bestående av existerande statistik och en patientundersökning, samt utförda intervjuer med patienter och vårdpersonal. Identifierade krav indikerar att astmapatienter inte är nöjda med den existerande fysiska sjukvårdsprocessen, då processen idag är tidskrävande och inte speciellt anpassad för astmatiker. Patientpreferenserna sammanfattades i tre aspekter; tillgänglighet och tidseffektivitet, en dynamiskt anpassad behandlingsplan samt utbildning och information. Tillsammans utgör funktionerna grunden för en digital kronisk sjukvårdstjänst för astmatiker. Studien bidrar till forskning genom att presentera en unik undersökning av existerande möjligheter med en patient-centrerad digital sjukvårdstjänst för astmatiker.

Background and Aim: There is a subset of conditions - Ambulatory Care Sensitive Conditions (ACSCs) - for which emergency admission into secondary care is thought to be avoidable through better primary care. This research aims to: develop a model to predict ACSC-admission rates by GP practice; determine whether ACSC-admission rates are a viable performance metric; identify how much inefficiency exists among practices; and identify interventions that reduce ACSC admissions. Methods: The work uses routine administrative datasets (e.g. HES and Attribution Dataset), linked at the level of the general practice, for all practices in England providing NHS care. It uses techniques including multiple linear regression, corrected ordinary least squares, stochastic frontier analysis and propensity score matching to test its hypotheses. Results: Adjusting for population characteristics (e.g. deprivation and disease prevalence), some QOF indicators and GP patient survey results were associated with lower admissions rates. Aggregating admission rates across more practices improved the accuracy of predicted rates; at average CCG size (33 practices), the 95% confidence interval is ± 8.6%. If all GP practices in England became as efficient as those that were top performing, allowing for practices' population characteristics, there would be a 20.4% reduction in the number of ACSC admissions, based on 2010/11 data. Two interventions were found to lower admission rates. Patient advice and liaison service led to 5.9% fewer admissions for diabetes and 6.5% fewer admissions for hypertension. Information and support for diabetes led to 4.1% fewer admissions for diabetes. Conclusions: Improving the efficiency of practices to best-practice levels would mean 242,143 fewer admissions per year - a £411m annual saving - however a metric for judging practices' quality based on ACSC-admission rates would need a degree of leniency. Interventions can be found that reduce ACSC admissions and commissioners should consider expanding them. ACSC-impact assessments should be carried out before commissioning such interventions.

One of the key findings of this thesis was the participants' perception of chronic pain impact. Participants' social-situational contexts, coping activities and help seeking approaches determined the degree of impact perceived in the experience of chronic pain. Experience of chronic pain impact was modified to varying degrees by engagement in coping activities e.g. physical and environmental and/or psychological and emotional, modifications and activities. Differences existed between those coping successfully or unsuccessfully as reflected in their overall coping approaches and/or strategies e.g. "active" or "passive". These approaches had positive or negative consequences for the process of adjustment. Expectations of GPs and primary care services were low. Actual experiences of consultations often contrasted with the ideal. Unmet needs and increasing frustration over repeated failed treatments was reported. Many participants moved on to seek help outwith the NHS e.g. CAM, and/or developed personal coping approaches and strategies. Others continued to consult whilst still believing that their GPs' neither did not care nor could not help them. These participants were amongst the most dependent and least evolved in their personal coping. Several typologies emerged from the thematic inductive analysis e.g. coping and consultations styles. Within these typologies, important socioeconomic differences were identified in the participants' ability to adapt e.g. to modify pain impact by developing successful coping strategies, gaining satisfactory health care treatment and obtaining health professional cooperation in or outwith the NHS. Thus, inequalities in pain experience and access to effective treatments were identified.

This study examines the importance of age, education, and the health system reforms in the mid 1990's on the utilization of five health services: specialists' visits, family doctor visits, non-physician health professional visits, hospital use, and home care services. The analysis focuses on the Canadians 45 and over, and uses data from the National Population Health Survey.<br>Results. Age per se has only a minor effect on utilization; the relative high utilization rates observed among the aged relate to the use of services by people with chronic conditions, whose prevalence is higher among the aged. Education has little impact on use of services among the aged. The reforms had only significant effect for four services. They increased utilization of non-medical health professional consults, and increased probability of consulting a specialist. They reduced length of stay, and decreased the number of visits made to family doctors.

The aging Canadian population, increasing incidence of chronic conditions, and rising healthcare costs have contributed to concerns that the current healthcare system may not meet healthcare needs. Canada has sought innovative ways to meet patients’ healthcare needs through reforms such as group medical visits (GMVs) and care by nurse practitioners (NPs). While studies have shown that care with NPs and GMVs is effective, there is limited evidence examining how NPs engage in innovative care delivery. The purpose of this study was to examine the impact of NP-led GMVs for patients with chronic conditions in primary care. This study used multiple methods, including a systematic review and meta- analysis and a multisite case study (N=3). The systematic review and meta-analysis included studies published between 1947 and 2012 for patients with type 1 or 2 diabetes who attended GMVs. Of the 94 studies identified, 13 met final inclusion criteria. Group medical visits had a positive effect on clinical and patient-reported outcomes, with significant reductions in glycated hemoglobin (HbA1c reduction −0.46%, 95% confidence interval −0.80% to −0.31%). The case study consisted of two cases where NPs were using GMVs and one where NPs were not using GMVs. Open-ended interviews with patients (N=12), providers (N=14) and 10 hours of direct observation were completed. Analysis of the data suggests that GMVs facilitated an environment that was patient centered, interprofessional and increased patients’ confidence managing chronic conditions. Furthermore, the processes of care within the GMVs disrupted power differentials in primary care, between patients and providers and amongst healthcare providers. Yet, these same power differentials constrained NPs’ ability to adopt GMVs, with NPs indicating that they had limited agency to diffuse healthcare innovations. Unique contributions of this study were a systematic review and meta-analysis of GMVs among those with diabetes and new knowledge on how power differentials influence the diffusion of innovations in primary care. These findings demonstrate that GMVs provide opportunities to meet clinical, team-based, and patient-centered healthcare objectives. Ongoing research that considers the context of practice environments, power differentials, and conditions that limit NPs ability to diffuse healthcare innovative is needed.<br>Applied Science, Faculty of<br>Nursing, School of<br>Graduate

Diabetes mellitus (DM) is a highly prevalent chronic disease that affects 29 million people in the United States including over 2 million veterans who receive care through the Veterans Administration. Patient-aligned care teams (PACTs) are an interprofessional teamwork system designed to improve outcomes of chronic illness, but empirical explorations of the efficacy of the PACTs have been insufficient. Utilizing the chronic care model, the purpose of this retrospective study was to determine if PACTs have been efficient in the diabetic management of veterans receiving care through a Southeastern VA. Medical records for 114 veterans with type 2 DM were randomly selected. A 1-way ANOVA was used to analyze outcomes for 5 evidence-based standards (SBP, DBP, BGL, A1C, & LDL) among 6 outpatient clinics. A repeated measures ANOVA was used for the same 5 evidence-based standards for the clinics to assess if there were any changes from FY2014 to FY2016. Results revealed that blood pressure readings and LDL levels met evidence-based standards, while A1C and BGL levels did not. No significant differences over the 3-year period were noted nor were there significant differences in patterns of performance between the clinics. The findings provide an essential basis for initiating a discussion on the potential of PACTs for the delivery of quality healthcare to U.S. veterans with diabetes and other chronic diseases. Positive social change can result from improving the delivery of healthcare using the PACT model to decrease morbidity, improve clinical outcomes, and increase the quality of life of U.S. veterans with type 2 DM. Future research that examines perceptions of clinical team members, team stability, and the delivery of shared care is warranted.

Chronic obstructive pulmonary disease (COPD) signifies a significant public health challenge that is both avoidable and treatable. There was no standardized education offered to the COPD population at the practice location. The scope of the project encompassed standardizing education by developing a self-management packet for the COPD patients. The goal of this project was to examine how the development of a standardized COPD self-management packet enhances the quality of care and strategizes reducing 30-day readmissions compared to nonstandardized delivery of education. Orem's self-care theory and Bandura's self-efficacy concept were used to explain the principle of self-management, while Rosswurm and Larrabee's evidence-based practice model was used to guide practice change. The U.S. Prevention Service Task Force's level of evidence hierarchy was chosen to categorize the strengths and weaknesses of the evidence referenced for this project. Postdevelopment surveys using the Likert scale were distributed to the facility's COPD committee, and a 70% response rate of strongly agreed to all questions was achieved. There were no adverse responses, and the packet was approved unanimously. Based on the positive responses, the packet will be easily adapted and beneficial in practice. The recommendation is to pilot the packet on the medical-surgical unit and follow-up postdischarge with phone calls to ascertain patients' perspective of the packet. Utilization of the education packet will lead to positive social change by affording the stakeholders self-management awareness and positive outcome measures including reducing the COPD 30-day readmission rate, curtailing economic strains, and promoting positive patient-centered relationships.

Self-management support (SMS) is considered an effective approach to chronic pain (CP) management. However, the provision of SMS for chronic pain patients faces challenges within primary care facilities in Ontario. An innovative SMS program led by a Registered Nurse (RN) at the Bruyère Family Health Team in Ottawa has been created for chronic pain patients. The goal of this program is to improve the current chronic pain management using SMS in an outpatient facility by harnessing the skills of primary health care team members. The hope would be that this program could be spread and scaled across other programs in the region. This thesis exists in two parts: 1. Evaluate the RN-led chronic pain self-management program to determine its effectiveness in terms of self-reported pain scales and Morphine Equivalence Quotient (MEQ) 2. Understand the perspectives of health care practitioners, administrators and patients within the RN-led chronic pain self-management program Patients meet with the RN for initial face-to-face visit for an hour, for SMS and then for at least one follow up visit. The primary outcome variables of interest were their self-reported pain evaluated using validated pain scales. Opioid use was also assessed before and after the porgram based on the MEQ. Results were analyzed using SPSSversion20. An online questionnair was distributed to team members. All responses were conceptually arranged into a SWOT analysis, which will be directed toward the ongoing management needs of the clinic. Between January 2016 and August 2018, 125 patients were seen of these 58 patients (12 males and 46 females) had at least one follow up appointment with the RN. In 46.2% of the population there was a decrease in their total opioid dose from their first to their last appointment and of these 4 patients (15.4%) had a daily MEQ of 0 by their last appointment. There was a significant average difference between patient’s daily MEQs at their first and last appointment (t20= 2.245, p<0.05). On average patients came into their first appointment with a daily MEQ of 23.88 higher than at their last visit (95% CI [1.69, 46.07]). Staff and patients who participated in the online survey identified the following strengths: multidisciplinary approach, increased accessibility for patients, cost effectiveness, better patient engagement, and no refills of opioids Canada needs a better strategy to manage the CP epidemic. This chronic pain self-management program led by an RN focuses on a multidisciplinary approach that is readily accessible to patients and integrated within primary care to best meet and prioritize the needs of chronic pain patients.

Objectives: To design, implement and evaluate an alternative physiotherapy group exercise programme used for managing chronic low back pain (CLBP) in Primary Care. Introduction: CLBP is a disabling condition with no established standard management. Conservative treatments such as supervised exercise and manual therapy have demonstrated some benefit. Group exercise programmes used in physiotherapy practice are a cost effective treatment for managing CLBP but currently lack a combination of individualized specific exercises, one to one education and manual therapy (‘hands on’ techniques). An alternative group programme was designed to address these limitations. Methods: This thesis consisted of two stages; a survey and a mixed methods design study. The physiotherapy survey was used in stage 1 to investigate what type of exercises are prescribed by physiotherapists and which group programmes are used in clinical practice for managing CLBP. One hundred and fifty-four questionnaires were distributed with a response rate of 63%. Ninety-seven percent of physiotherapists surveyed refer their CLBP patients to group programmes but only 47% of all respondents were able to refer non-English speaking patients. None of the group programmes offered manual therapy. The alternative group physiotherapy programme was developed using this research, review of the literature and consultation with service providers. In stage 2, the alternative group exercise programme was evaluated using a mixed methods preliminary study consisting of a core quantitative and supplementary qualitative phases. The alternative group programme (Group A) was compared to a standard group exercise programme used in clinical practice (Group B) in a single blinded randomised controlled trial. Participants with CLBP were allocated to the two programme groups by block randomisation. Participants in both groups attended six one-hour programme sessions over a 3-month period. Outcomes measuring function, pain, quality of life (EQ-5D) and satisfaction with treatment were used to evaluate the effectiveness of the programmes pre and post programme attendance and at 6 months. Focus groups in the qualitative phase were used to explore patients’ experiences regarding their treatment in the two group programmes. Results Stage 2: Eight-one participants were randomised to the two groups (41 in Group A; 40 in Group B). There was a drop-rate of 33% and only 41% were followed up at 6-months (n=10, Group A; n=12, Group B). There were no statistically significant differences between groups in outcome scores and apart from the EQ-5D at six months, the associated effect sizes were small. The within group analysis revealed significantly lower disability and pain scores post-programme compared to pre-programme in both groups. There were significantly higher EQ-5D scores post-programme compared to pre-programme in Group A but not in Group B. Quality of life deteriorated in Group B at 6-months. The focus group interviews showed that patients prefer individualised exercises and one-to-one education which are components of the alternative programme. Conclusion: This alternative programme may provide a suitable addition to existing programmes available for managing CLBP. This research may change the way physiotherapists deliver exercise for CLBP patients in a group setting.

<p> The focus of recent attention in healthcare is the increasing population of people with chronic condition and the increasing cost of managing the health of this population. To improve care outcomes and increase cost effectiveness of managing the health of these patients their care needs to be directed by evidence-based approaches. One of these approaches could be wellness health coaching directed toward helping patients self-manage their chronic condition. The problem however, is that the research on the role of wellness health coaches with helping patients self-manage their chronic condition is limited. Therefore, research that focuses on the role of wellness health coaches and their approaches to facilitate self-management are needed. </p><p> To gain understanding of the role and approaches of these wellness health coaches a phenomenological method was used. By personal interviews with six wellness health coaches, the researcher sought to answer the two research questions by describing their perceived role and their approaches to facilitate self-management of individuals with chronic conditions. </p><p> Wellness health coaches in this study perceived their roles as educators, motivators, guides, supporters, facilitator, collaborator, and coordinator. With all their clients they help set goals and develop a plan to meet their goals. The wellness health coaches' approaches to help improve their clients' self-management skills include providing them with written educational materials, resource information, and other tools such as websites on health information. All of these wellness health coaches' activities are aimed at empowering their clients to be able to improve their lifestyle and overall health.</p>

<p> Previous research has supported the notion that significantly more women than men seek help for chronic pain. This study aims to understand gender differences in how, when, and from whom individuals seek help for chronic pain. In particular, many aspects of masculinity have been demonstrated to inhibit help seeking. Participants were a sample of patients seeking treatment at a pain treatment facility. It was hypothesized that there would be a greater discrepancy between pain self-reported on paper versus in person by men than would be by women. It was also hypothesized that higher conformity to masculine norms would be positively related to greater self-report discrepancy. Additionally, the author expected to find gender differences in the amount of time between the onset of pain and disclosure of pain as well as medical help seeking. Again, it was anticipated that greater delays in disclosure and medical help seeking would be related to higher conformity to masculine norms. Moreover, conformity to masculine norms was expected to mediate gender differences in help seeking. The author also hypothesized that the type of people to whom pain is first disclosed would differ based on differences in gender and conformity to masculine norms.</p>

Background: There currently exists a vast amount of literature concerning chronic illness self-management, however the developmental patterns and sustainability of self-management over time remain largely unknown. This paper aims to describe the patterns by which different chronic illness self-management behaviors develop and are maintained over time. Method: Twenty-one individuals newly diagnosed with chronic illnesses (e.g., diabetes, rheumatism, ischemic heart disease, multiple sclerosis, chronic renal disease, inflammatory bowel disease) were repeatedly interviewed over two-and-a-half years. The interviews were conducted in Sweden from 2006 to 2008. A total of 81 narrative interviews were analyzed with an interpretive description approach. Results: The participants’ self-management behaviors could be described in four different developmental patterns: consistent, episodic, on demand, and transitional. The developmental patterns were related to specific self-management behaviors. Most participants took long-term medications in a consistent pattern, whereas exercise was often performed according to an episodic pattern. Participants managed health crises (e.g., angina, pain episodes) according to an on demand pattern and everyday changes due to illness (e.g., adaptation of work and household activities) according to a transitional pattern. All of the participants used more than one self-management pattern. Conclusion: The findings show that self-management does not develop as one uniform pattern. Instead different self-management behaviors are enacted in different patterns. Therefore, it is likely that self-management activities require support strategies tailored to each behavior’s developmental pattern.<br>Exploring individuals’ conceptions as a way to understand self-management among people living with long term medical conditions

The objective of this dissertation is to estimate the health and economic outcomes associated with two prominent child health conditions: autism spectrum disorder and influenza illness. Chapter 1 derives utility values associated with the health of children with autism spectrum disorder (ASD) and their parents. Our findings suggest that ASD has a large impact on the health-related quality of life of children and their caregivers, and that this impact is influenced by both the child’s specific diagnosis and the severity of their core social communication and repetitive behavior symptoms. Chapter 2 estimates the annual incremental costs associated with caring for a child with ASD from the societal perspective. Our findings suggest that there is a large economic burden both in terms of formal costs (healthcare, school and other direct costs of care) as well as the informal time costs of caregiving. Specifically, the societal costs of caring for this population amounted to $9.1 billion in 2011 alone, highlighting the tremendous financial challenges our society faces in meeting the needs of children with ASD. Chapter 3 uses a decision analytic model to evaluate 1-year clinical and economic outcomes associated with oseltamivir treatment for seasonal influenza in children, and considers the impact of oseltamivir resistance on these findings. Our results indicate that for unvaccinated children who present to their physician’s office with influenza-like symptoms, empiric antiviral treatment with oseltamivir appears to be a cost-effective treatment option. This is particularly true for ill children aged 1 to 12 years, but results are dependent on the prevalence of circulating seasonal influenza viruses that are resistant to oseltamivir.

Background: In chronic obstructive pulmonary disease (COPD), understanding the problem of poor patient participation in evidence-based self-management (SM) and pulmonary rehabilitation (PR) programmes (together referred to as SM support programmes) is critical. This thesis aimed to improve understanding of poor patient participation and retention in these programmes; how participation might be improved; and how might patients be better supported with their SM. Methods: Using the Medical Research Council guidance on complex interventions this thesis (1) quantified the 'actual' patient participation and completion rates; (2) explained, using theory, the factors that influenced participation in studies of SM support including the programmes among chronic disease and COPD patients; and (3) explored patient and expert stakeholders' perspectives on the reasons for non-participation in SM support programmes, how participation might be improved, how might patients be supported with their SM. Results: (1) Among 56 studies, high study participation rates and completion rates were seen however, the incomplete reporting of participant flow confused the problem of participation. (2) Among 31 studies, participation among patients with chronic disease including COPD was shown to be influenced by their 'attitude' and 'perceived social influence/subjective norms'; 'illness' and 'intervention perceptions'. (3) From 38 interviewees, besides patients' beliefs, non-participation was also influenced by resignation and denial of the illness; health systems; and programme organisational factors. Professionals building relationships and supporting patients with their SM alongside programme organisational improvements might encourage patient participation in SM and the programmes. Conclusions Patient participation is a complex behaviour, besides socio-behavioural factors, participation behaviour can by influenced by a mix of several health system and programme organisational factors. Changing the behaviour of health professionals and indeed the wider health system, towards normalising a patient partnership approach, with implementation of SM support in routine care might help more patients to consider participation in their care and improve patient participation in COPD SM support programmes.

The demands that are placed on healthcare systems continue to increase, but several studies show that patient care and healthcare system outcomes are not as good as they could be. To come to terms with these problems, many stakeholders turn to systematic quality improvement methods. However, research and practice also shows that change in organisations is difficult. Consequently many quality improvement projects fail. Quality Improvement Collaboratives (QICs), introduced through the use of the Breakthrough series model, represent a commonly used approach. Despite their widespread application, uncertainty remains regarding the effectiveness of QICs. In Sweden, a number of national quality registries document healthcare actions and outcomes for different patient-groups and problem-areas. While these registries have long been used for follow-up purposes and for clinical research, they have not been used extensively for systematic clinical improvement purposes. The overall aim of this thesis was to examine if, and how, QICs which are supported by national quality registries can contribute to quality improvement in the provision of healthcare. The aim was also to examine what learning and new understanding occurred in the application of QICs in different settings. The empirical material in this thesis comes from three QICs which included participating teams from different hospitals and health centres in Sweden. Each QIC included a national quality registry: the National Quality Registry for Acute Myocardial Infarction Care (RIKS-HIA); the National Diabetes Registry (NDR); and the Swedish Paediatric Diabetes Quality Registry (SWEDIABKIDS). The thesis draws on an interactive research approach. The data collection and analysis employed both qualitative and quantitative methods. Data fromthe National Quality Registries, final team reports, focus-group interviews, and team members’ experiences were analysed and triangulated. The studies shows that QICs which are supported by national quality registries helped teams to close a number of gaps between ordinary clinical practice and evidence-based guidelines, thereby contributing to the provision of better care and better clinical outcomes (Study I, Study II, and Study III). Important factors for success included stakeholders’ learning andunderstanding of the organisational context; structures that supported improvement efforts; and team members’ and managers’ commitment to improvement (Study IV). Furthermore, support by an internal team coach also promoted success (Study IV). This thesis shows how national quality registries can be used in combination with systematic improvement efforts to produce better clinical results. It concludes that different areas of QIC application pose different challenges; for example, addressing care for acute disease versus chronic disease and evaluating professionally influenced process measures versus patient dependent outcome measures. While different organizational contexts and care characteristics can pose challenges to QIC efforts, the formation of “Communities of Practice” during QICs enhanced the learning for improvement with and from others.

BACKGROUND The epidemics of non-communicable diseases and the need for cost-containment are triggering a profound reshaping of healthcare delivery toward adoption of the Chronic Care model, involving deployment of integrated care services (ICS) with the support of information and communication technologies (ICS-ICT). In this scenario, emerging systems medicine, with a holistic mechanism-based approach to diseases, may play a relevant role in health risk assessment and patient stratification. The general aim of Synergy-COPD was to explore the potential of a systems medicine approach to improve knowledge on underlying mechanisms of chronic obstructive pulmonary disease (COPD) heterogeneity, focusing on systemic effects of the disease and co-morbidity clustering. The transfer of acquired knowledge to healthcare was also a core aim of the project. Moreover, Synergy-COPD explored novel cross talk between biomedical research and healthcare to foster deployment of 4P (Predictive, Preventive, Personalized and Participatory) Medicine for patients with chronic disorders. The current PhD thesis contributed to Synergy-COPD focusing on two specific areas: i) a quantitative analysis of the relationships between cellular oxygenation and mitochondrial reactive oxygen species (ROS) generation; and, ii) different ICT developments addressing transfer of knowledge to healthcare and the interplay with biomedical research. HYPOTHESIS The overarching hypothesis of this PhD thesis is that subject-specific health risk assessment and stratification may lead to novel and a more efficient patient-oriented healthcare delivery. Specifically, the current PhD studies hypothesize that predictive mechanistic modeling integrating oxygen pathway and mitochondrial function can contribute to assess the biological effects of cellular hypoxia and its role on skeletal muscle dysfunction in COPD. Moreover, it is hypothesized that a holistic design of the ICT support may contribute to a successful deployment of ICS-ICT for chronic patients fostering the transfer of the achievements of systems-oriented research into healthcare. OBJECTIVES To integrate physiological modeling of the O2 pathway and biochemical modeling of mitochondrial ROS generation to quantitatively analyze the relationships between skeletal muscle oxygenation and mitochondrial ROS generation. To develop ICT tools supporting Integrated Care Services (ICS-ICT) for chronic patients, as well as innovative cross talk between systems-oriented biomedical research and healthcare. MAIN FINDINGS Quantitative analysis between cellular oxygenation and mitochondrial ROS generation The model analyzed the role of all the physiological determinants of the O2 pathway. It was shown that a given degree of heterogeneity in the skeletal muscle reduces overall O2 transfer more than does lung heterogeneity, but actually observed heterogeneity in lung is greater than in muscle, so that lung heterogeneity has a greater impact on overall O2 transport. In addition, muscle heterogeneity showed to increase the range of skeletal muscle PmO2 values, and in regions with a low ratio of metabolic capacity to blood flow, mitochondrial PO2 (PmO2) could exceed that of mixed tissue venous blood. Unfortunately, assessment of skeletal muscle functional heterogeneities is highly limited due to technological constraints. The model indicates that the ratio between O2 transport capacity and mitochondrial O2 utilization potential determines PmO2. The phenomenon might be highly relevant after high intensity resistance training in COPD patients with limitation of O2 transport due to the pulmonary disease. Simulations using data from healthy subjects during maximal exercise revealed that altitude triggers high mitochondrial ROS production in skeletal muscle regions with high metabolic capacity, but limited O2 delivery, already evident at approx. 17,000 ft. above sea level. This is the altitude above which permanent human habitation does not occur, and the altitude above which humans experience inexorable loss of body mass. However, it is concluded that the use of the integrated model in disease conditions requires further refinement of mitochondrial parameter estimation. ICT-support to the deployment of integrated care services (ICS-ICT) and to the cross talk between healthcare and systems-oriented biomedical research An open and modular platform was developed to provide the common basic set of tools and technologies to support the implementation of ICS-ICT for chronic patients. The platform has effectively covered the four ICS developed and assessed within the NEXES European project (2008-2013, www.nexeshealth.eu) in one of Barcelona’s Health Care Districts accounting for 540.000 inhabitants, and has shown potential for further deployment at regional level. The concept of the Digital Health Framework (DHF) was articulated to provide linkage between healthcare and innovative systems-oriented biomedical research. The Synergy-COPD knowledge base was developed as a component of the DHF-research to enforce the transition toward 4P medicine. CONCLUSIONS 1. The model integrating physiological determinants of the O2 pathway and biochemical modulators of mitochondrial ROS formation provides, for the first time, a quantitative assessment of the relationships between cellular oxygenation and mitochondrial ROS production. The model generates consistent results in health, but parameter estimations when applied to COPD needs refinement. 2. The ICT-platform supporting integrated care services (ICS) for chronic patients effectively covered the functional requirements for deployment within a single-provider environment. The challenges to be faced for regional deployment of the ICS were identified and strategies for adoption have been proposed. 3. The Digital Health Framework (DHF) conceptualizes a scenario for an effective cross talk between integrated care and systems-oriented biomedical research that should foster deployment of 4P medicine. Future steps for adoption of the DHF have been proposed. 4. The COPD-specific knowledge base (COPDkb), developed and assessed in the current PhD thesis, constitutes a pivotal component of systems-oriented biomedical research.<br>INTRODUCCIÓ La proliferació de les malalties no contagioses i la creixent necessitat de reduir costos està desencadenant una remodelació estructural de l’atenció sanitària envers el model d’atenció a crònics, involucrant la implementació de serveis d’atenció integrada (SAI) amb el suport de les tecnologies de la informació i la comunicació (SAI-TIC). En aquest escenari, la emergent medicina de sistemes, amb un aproximació holística basada en els mecanismes de les malalties, juga un rol rellevant a l’avaluació del risc per la salut i la estratificació de pacients. L’objectiu principal de Synergy-COPD ha estat la exploració del potencial de una aproximació de la medicina de sistemes per tal de millorar el coneixement dels mecanismes subjacents a la heterogeneïtat de la malaltia pulmonar obstructiva crònica (MPOC). Fent èmfasi als efectes sistèmics de la malaltia, així com en la comorbiditat. La transferència de nous coneixements a l’atenció sanitària ha estat també un dels objectius principals d’aquest projecte. A més, Synergy-COPD ha explorat noves interaccions envers la investigació biomèdica i l’atenció sanitària, amb la darrera finalitat de promoure la medicina 4P (predictiva, preventiva, personalitzada i participatòria) per a pacients amb malalties cròniques. Aquesta tesi doctoral contribueix amb Synergy-COPD en dos aspectes específics: 1. Un anàlisi quantitatiu de la relació entre la oxigenació cel•lular i la producció de radicals lliures d’oxigen (ROS) a nivell mitocondrial. 2. Diversos desenvolupament tecnològics adreçats a la transferència de coneixement biomèdic envers a l’atenció sanitària i la investigació biomèdica. HIPÒTESIS La hipòtesi general d’aquesta tesi doctoral és que una personalització de l’avaluació del risc per a la salut i la estratificació de pacients ha de desencadenar en una atenció sanitària més eficient i orientada envers pacient. Específicament aquesta tesi doctoral planteja la hipòtesi de que el modelatge mecanicista del sistema de transport i utilització d’oxigen, tenint en compte la funció mitocondrial, pot contribuir a avaluar els efectes biològics d ela hipòxia cel•lular i el seu paper a la disfunció del múscul esquelètic a la MPOC. D’altra banda, aquesta tesi doctoral planteja també la hipòtesi referent a que un disseny holístic basat en les TIC pot contribuir a un desplegament efectiu de SAI-TIC per a pacients crònics, fomentant l’aplicació dels assoliments de la investigació orientada a sistemes a l’assistència sanitària. OBJECTIUS La integració de un modelatge fisiològic del sistema de transport i utilització d’oxigen amb el modelatge bioquímic de la generació mitocondrial de ROS, amb la finalitat d’analitzar les relacions entre la oxigenació del múscul esquelètic i la producció mitocondrial de ROS. El desenvolupament d’eines TIC que donin suport a Serveis d’Atenció Integrada (SAI-TIC) per a pacients crònics, i per tal de fomentar la interacció entre la investigació biomèdica basada en la medicina de sistemes i l’atenció sanitària. RESULTATS PRINCIPALS Anàlisi quantitatiu de la relació entre oxigenació cel•lular i la generació mitocondrial de ROS El modelatge realitzat en aquesta tesi doctoral analitza tots els factor determinants del sistema de la cadena de transport d’oxigen. S’ha demostrat que donat un cert grau d’heterogeneïtat al múscul esquelètic es disminueix la transferència global d’oxigen més de lo que la redueix la heterogeneïtat pulmonar. D’altra banda, la heterogeneïtat observada actualment a nivell pulmonar es major que la observada al múscul, per tant la heterogeneïtat pulmonar en general té un impacte més gran sobre la transferència total d’oxigen. A més, es demostra que la heterogeneïtat muscular incrementa el rang de nivells d’oxigenació cel•lular (PmO2), i a regions del múscul esquelètic amb una major aportació sanguínia en comparació a la capacitat metabòlica, els valors de PmO2 poden excedir els valors d’oxigenació venosa mixta. Malauradament, la mesura del nivell d’heterogeneïtat funcional al múscul esquelètic és molt insuficient degut a les limitacions tecnològiques. El model indica que la relació entre la capacitat de transport d’oxigen i utilització d’oxigen determina principalment els valors d’oxigenació cel•lular PmO2. Aquest fenomen, pot ser molt rellevant després d’un procés d’entrenament d’alta intensitat a pacients MPOC amb limitacions de transport d’oxigen degut a la malaltia pulmonar. Les simulacions utilitzant dades mesurades en subjectes sans realitzant exercici màxim han desvelat que l’altitud desencadena una alta producció de ROS mitocondrial a les regions del múscul esquelètic amb una altra capacitat mitocondrial però amb una limitada capacitat d’aportació d’oxigen. Aquesta observació és evident a partir d’una altitud corresponent a uns 5000 metres sobre el nivell del mar. Per sobre d’aquesta altitud no existeix cap assentament humà permanentment habitat i els humans experimenten una pèrdua inexorable de massa corporal. Però, es conclou que l’ús del model integrat en condicions de malaltia requereix una millor estimació dels paràmetres mitocondrials. Suport TIC per al desplegament de serveis d’atenció integrada (SAI-TIC) i la interacció entre l’atenció sanitària i la investigació biomèdica basada en la medicina de sistemes S’ha desenvolupat una plataforma tecnològica modular que proporciona un conjunt bàsic d’eines i tecnologies per donar suport a la implementació de SAI-TIC per a pacients crònics. Aquesta plataforma tecnològica ha suportat de manera eficient els quatre SAI dissenyats i avaluats en el context del projecte europeu NEXES (2008-2013, www.nexeshealth.eu) a un dels districtes sanitaris de Barcelona, amb un total de 540.000 habitants, i ha mostrat potencial d’escalabilitat a nivell regional. El concepte de “Digital Health Framework (DHF)” ha estat articulat amb la finalitat d’enllaçar l’atenció sanitària i a la investigació biomèdica basada en la medicina de sistemes. La base de coneixement de Synergy-COPD ha estat desenvolupada com a un component d’investigació del DHF per tal de fomentar la transició envers una medicina 4P. CONCLUSIONS 1. El model que integra els determinants fisiològics de la cadena de transport d’oxigen i els elements bioquímics moduladors de la formació a nivell mitocondrial de ROS, ha proporcionat, per primera vegada, un anàlisi quantitatiu de la relació entre la oxigenació cel•lular i la producció mitocondrial de ROS. El model genera resultats consistents en salut, però una millor estimació dels paràmetres mitocondrials és necessària quan s’aplica a MPOC. 2. La plataforma tecnològica per al suport de serveis d’atenció integrada (SAI) per a pacients crònics ha cobert de forma efectiva els requisits funcionals per al desplegament d’un entorn amb un únic proveïdor. Els reptes que cal afrontar per a un desplegament a nivell regional de SAI han estat identificats i s’han proposat estratègies per a la seva adopció. 3. El concepte de “Digital Health Framework (DHF)” representa un escenari on l’enllaç entre l’atenció integrada i la investigació biomèdica de medicina de sistemes han de promoure el desplegament de la medicina 4P. S’ha proposat les línies estratègiques per a una correcta adopció del DHF. 4. La base del coneixement específica per a MPOC (COPDkb) ha estat desenvolupada i analitzada en aquesta tesi doctoral, constitueix un component principal de la investigació biomèdica basada en la medicina de sistemes.<br>INTRODUCCIÓN La proliferación de enfermedades no transmisibles y la creciente necesidad de contención de costes están desencadenando un profundo rediseño de la atención sanitaria hacia la adopción de un modelo de atención a crónicos, involucrando la implementación de servicios de atención integrada (SAI) con el soporte de las tecnologías de la información y de la comunicación (SAI-TIC). En este escenario, la emergente medicina de sistemas, con una aproximación holística basada en los mecanismos de las enfermedades, juega un papel muy relevante en la evaluación del riesgo para la salud y la estratificación de pacientes. El objetivo principal de Synergy-COPD ha sido la exploración del potencial de una aproximación de medicina de sistemas para mejorar el conocimiento de los mecanismos subyacentes a la heterogeneidad de la enfermedad pulmonar obstructiva crónica (EPOC). Haciendo énfasis en los efectos sistémicos de la enfermedad, así como en la comorbilidad. La transferencia de nuevos conocimiento a la atención sanitaria ha sido también un objetivo principal del proyecto. Por otro lado, Synergy-COPD ha explorado nuevas interacciones entre investigación biomédica y atención sanitaria, con la finalidad última de promover la medicina 4P (Predictiva, Preventiva, Personalidad y Participativa) para pacientes con enfermedades crónicas. Esta tesis doctoral contribuye con Synergy-COPD en dos aspectos específicos: 1. Un análisis cuantitativo de la relación entre la oxigenación celular y la producción de radicales libres de oxígeno (ROS) a nivel mitocondrial. 2. Diversos desarrollos tecnológicos dirigidos a la trasferencia de conocimiento biomédico a la atención sanitaria y la investigación biomédica. HIPÓTESIS La hipótesis general de esta tesis doctoral es que una personalización de la evaluación del riesgo para la salud y la estratificación, tiene que desencadenar una atención sanitaria más eficiente y orientada al paciente. Específicamente, esta tesis doctoral plantea la hipótesis de que un modelado mecanicista del sistema de transporte y utilización de oxígeno, teniendo en cuenta la función mitocondrial, puede contribuir a evaluar los efectos biológicos de la hipoxia celular y su papel en la disfunción del músculo esquelético en la EPOC. Por otra parte, se plantea la hipótesis de que un diseño holístico basado en las TIC puede contribuir a una implementación exitosa de SAI-TIC para los pacientes crónicos, fomentando la transferencia de los logros de la investigación orientada a sistemas en la asistencia sanitaria. OBJETIVOS La integración del modelado fisiológico del sistema de transporte y utilización de oxígeno con el modelado bioquímico de la generación mitocondrial de ROS, con la finalidad de analizar las relaciones entre la oxigenación del músculo esquelético y la producción mitocondrial de ROS. El desarrollo de herramientas TIC que den soporte a servicios de atención integrada (SAI-TIC) para pacientes crónicos, y que fomenten la interacción entre la investigación biomédica basada en la medicina de sistemas y la atención sanitaria. RESULTADOS PRINCIPALES Análisis cuantitativo de la relación entre oxigenación celular y la generación mitocondrial de ROS El modelaje realizado en esta tesis doctoral analiza todos los factores determinantes de la cadena de transporte de oxígeno. Se ha mostrado que un determinado grado de heterogeneidad en el músculo esquelético reduce la transferencia global de oxígeno más de lo que la reduce la heterogeneidad pulmonar. Sin embargo, la heterogeneidad observada actualmente a nivel pulmonar es mayor que la observada en músculo, por lo tanto, la heterogeneidad pulmonar en general tiene un impacto mayor sobre la transferencia total de oxígeno. Por otra parte, hemos mostrado que la heterogeneidad muscular incrementa el rango de niveles de oxigenación celular (PmO2), y en regiones del músculo esquelético con un mayor aporte sanguíneo en comparación con la capacidad metabólica, los valores de PmO2 pueden exceder los correspondientes valores de oxigenación venosa mixta. Desafortunadamente, la medición del nivel de heterogeneidad funcional en músculo esquelético es muy insuficiente debido a las limitaciones tecnológicas. El modelo indica que la relación entre la capacidad de transporte y utilización de oxígeno determina principalmente los valores de oxigenación celular (PmO2). Este fenómeno, puede que sea muy relevante después de un proceso de entrenamiento de alta intensidad en pacientes EPOC con limitaciones de transporte de oxígeno debido a la enfermedad pulmonar. Simulaciones utilizando datos medidos en sujetos sanos realizando ejercicio máximo han desvelado que la altitud desencadena una alta producción de ROS mitocondrial en las regiones del músculo esquelético con una alta capacidad metabólica pero con una limitada capacidad de aporte de oxígeno. Esta observación, es evidente a partir de una altitud correspondiente a 5000 metros sobre el nivel del mar. Por encima de esta altitud no existe ningún asentamiento humano permanentemente habitado y los humanos experimentan una perdida inexorable de masa corporal. Sin embargo, se concluye que el uso del modelo integrado en condiciones de enfermedad requiere una mejor estimación de los parámetros mitocondriales. Soporte TIC para el despliegue de servicios de atención integrada (SAI-TIC) y la interacción entre la atención sanitaria y la investigación biomédica basada en la medicina de sistemas Se ha desarrollado una plataforma tecnológica modular que proporciona un conjunto básico de herramientas y tecnologías para dar soporte a la implantación de SAI-TIC para pacientes crónicos. Esta plataforma tecnológica ha soportado de manera eficiente los cuatro SAI diseñados y evaluados en el contexto del proyecto europeo NEXES (2008-2013, www.nexeshealth.eu) en uno de los distritos sanitarios de Barcelona, con un total de 540.000 habitantes, y ha mostrado potencial de escalabilidad a nivel regional. El concepto de “Digital Health Framework (DHF)” ha sido articulado con el fin de enlazar la atención sanitaria y la investigación biomédica basada en la medicina de sistemas. La basa de conocimiento de Synergy-COPD ha sido desarrollada como un componente de investigación del DHF para fomentar la transición hacia una medicina 4P. CONCLUSIONES 1. El modelo que integra los determinantes fisiológicos de la cadena de transporte de oxígeno y los elementos bioquímicos moduladores de la formación a nivel mitocondrial de ROS, ha proporcionado, por primera vez, un análisis cuantitativo de la relación entre la oxigenación celular y la producción mitocondrial de ROS. El modelo genera resultados consistentes en salud, pero una mejor estimación de los parámetros mitocondriales es necesaria cuando se aplica en EPOC. 2. La plataforma tecnológica para el soporte de servicios de atención integrada (SAI) pra pacientes crónicos ha cubierto de forma efectiva los requisitos funcionales para el despliegue en un entorno con un único proveedor. Los retos que se han afrontar un despliegue regional de SAI, han sido identificados y se han propuesto estrategias para su adopción. 3. El concepto de “Digital Health Framework (DHF)” representa un escenario en el que el enlace entre atención integrada e investigación biomédica de medicina de sistemas debe promover el despliegue de la medicina 4P. Se han propuesto líneas estratégicas para una correcta adopción del DHF. 4. La base de conocimiento específica para EPOC (COPDkb) que ha sido desarrollada y analizada en esta tesis doctoral, constituye un componente principal de la investigación biomédica basada en la medicina de sistemas.