Thesis advisor: Sara Moorman / Improved survival for medical conditions that were previously fatal in infancy has led to more individuals living longer with chronic illnesses. These individuals, some of whom have largely unapparent, unpredictable, and yet severe symptoms from birth, may experience a unique set of physical, social, and emotional impacts associated with their condition as compared to youth with less severe, treatable pediatric conditions or individuals with adult-onset conditions. This dissertation explores these challenges using the case of youth with Barth Syndrome (BTHS), a rare, severe, genetic condition in males associated with life-limiting and life-threatening symptoms. Research questions explored: (1) how symptom severity, visibility, and controllability informed individuals’ social management and legitimization of BTHS; (2) how awareness regarding their limited, uncertain prognosis impacted life planning for youth with BTHS; and (3) which coping strategies individuals with BTHS used to manage the physical, social, and emotional impacts associated with their incurable, life-limiting condition. Thirty-three sixty-minute interviews were conducted in two groups: individuals with BTHS ≤15 years of age (n=18) and/or their caregivers, and individuals with BTHS ≥16 years of age (n=15). Interview transcripts were analyzed using Atlas.ti. Results demonstrated that (1) the severity, visibility, and lack of control over BTHS symptoms was associated with individuals needing to seek social support for their condition, rather than attempting to pass as healthy as other males with chronic conditions have been found to do; (2) individuals opted to forgo socially “on-time” goals (i.e., long-term, knowledge-based goals) based on their perceptions of their limited, uncertain time horizons and struggled to identify alternative goals; and (3) individuals used secondary coping strategies (i.e., regulating their emotional responses to their external stressor rather than controlling the stressor itself) to cope with the impacts associated with having an incurable, severe, and chronic health condition. These results can be used to inform practices for providing increased social and institutional support to chronically ill youth, including promoting positive coping strategies and facilitating meaningful, attainable, goal selection. These interventions may alleviate some of the challenges faced by the growing number of youth living with chronic illnesses seeking to safely and meaningfully engage in the realms of work, family, education, and social life. / Thesis (PhD) — Boston College, 2019. / Submitted to: Boston College. Graduate School of Arts and Sciences. / Discipline: Sociology.

This study was a cross-sectional epidemiologic evaluation of the clinical, sociodemographic, lifestyle and hospital utilisation characteristics of patients with diabetes, chronic obstructive pulmonary disease and chronic heart failure. Patients were enrolled in chronic disease management services of the Northern Alliance Hospital Admission Risk Program-Chronic Disease Management (Northern Alliance HARP-CDM Program). The program was established in accordance with the Department of Human Services’ (Victoria, Australia) initiative to intervene against increasing acute hospital demand by patients with chronic disease and complex needs. Amongst others, the Northern Alliance HARP-CDM Program provides services for patients with diabetes, chronic heart failure and chronic obstructive pulmonary disease. Patient cohorts with these three chronic diseases were the focus of this study. The Northern Alliance HARP-CDM Program catchment comprises of a culturally and linguistically diverse (CALD) population in the northern part of metropolitan Melbourne. Patients in this region mainly access acute hospital services at the Northern Hospital. The study sought to explore whether the CDM services enrolled patients whom based on their characteristics, fit the risk profile of the intended HARP-CDM target patient population. / The study cohorts demonstrated a CALD make up of above Victorian state averages. The majority (60%) were born overseas, preferred a language other English and were over 60 years old. In contrast to previously published studies, CALD did not demonstrate a significant contribution to disease control, quality of life or level of hospital utilisation. Place of residence for these patients showed clusters within some Local Government Areas. This has implications for service location, access and disease surveillance. Also, it presents opportunities for area targeted health promotion and prevention and overall service location. The majority (77%) of those with chronic heart failure had an abnormal left ventricular ejection fraction. The diabetes cohort was characterised by higher HbA1c (9%) than the target of less than 8%. Similarly the patients had greater than recommended waist circumferences (Males 106cm vs. 94cm; Females 106 vs. 80cm) places them at an increased risk of cardiovascular disease. For those with COPD, 42% had severe pulmonary impairment (FEV%predicted ≤ 40%) while 36% were moderate in the moderate category. / There was increased hospital utilisation with increasing age for those with COPD. With the exception of the diabetes cohort, there was no significant evidence as to the role of ethno-cultural factors in the study cohorts’ health, quality of life or level of hospital utilisation. However, ethno-cultural factors may contribute to the complexity of patient management processes and warrants further investigation. / Prior to enrolment in the Northern Alliance HARP-CDM Program, patients who could be considered high users of emergency department services made up 20% of those in the diabetes service, 43% in the COPD service and 50% amongst those in the CHF service. Similar figures for hospital admissions ranged from 20% for the diabetes services to 56% for the CHF service cohorts respectively. Although the diabetes service was the biggest of the three the majority of patients in the service had no previous history of acute hospital utilisation. Members of the diabetes service cohort were characterised by hospital utilisation rates lower than the Northern Hospital’s (ED: 34 vs. 72 per 100 patients, Admissions: 33 vs. 68 per 100 patients in the Pre HARP-CDM Period). Patients in the COPD service (ED: 115 Pre and 158 during HARP-CDM) and CHF service (160 Pre and 159 during HARP-CDM) had ED presentation rates per 100patients that were higher than the hospital’s (72 and 69). / The rates suggest the first 14 months of the Northern Alliance HARP-CDM Program were associated with increased hospital utilisation by patients enrolled the Northern Alliance HARP-CDM Program. The increments were greater than increases for the Northern Hospital for the same periods. Contrary to the intended goal of reducing acute hospital utilisation, the majority of the clientele did not fit the primary HARP-CDM Program criteria of high acute hospital users. But patients who were enrolled following previous hospital utilisation were well-targeted. However there are several patients who are likely HARP-CDM Program candidates who fall though the gaps between the acute hospital services and the program. / It is recommended the program and services increase enrolments and access for the target patient populations. There is a need for early intervention chronic disease management and health promotion. This service would cater for clients who by virtue of having a chronic disease are at risk but are currently not high acute hospital users. Such a service would free up vacancies in the Northern Alliance HARP-CDM Program, thus enabling increased intake and equitable access for the target patient population, especially those who fall though the gaps as referred to earlier. Funding for such a service is available through DHS. In light of strong evidence for exercise rehabilitation and its ability to positively impact patient outcomes, quality of life, survival and hospital utilisation, consideration needs to be given to this as part of the Northern Alliance HARP-CDM Program chronic disease management care model.

No description available.

Asthma, gout and hypothyroidism are common chronic medical disorders encountered in general practice. Optimal disease management according to standard guidelines are fundamental to disease control. This study aimed to objectively and subjectively assess the quality of care provided in a private general practice to patients with asthma, gout and hypothyroidism by means of a practice audit and questionnaire based survey. These tools proved to be an effective measure for the quality of care provided and identified areas needing improvement. Patient’s understanding of the disease process plays an important role in both patient satisfaction ratings and success of disease control. The medical audit identified and highlighted specific areas of care that can be improved. Evidence from the practice audit showed that control for asthma based on the PEFR readings, gout based on the serum uric acid reading and hypothyroidism based on a blood TSH reading, was found at 56.7%, 43.3%, and 66.7 % respectively. In addition acute attacks of asthma and gout occurred in 22.7% and 32.8% respectively. This does not represent good control. Definition of disease control for each condition is placed in the text. The survey revealed overall patient understanding for the disease processes of asthma, gout and hypothyroidism to be 69.6%, 73.3% and 66.8% respectively. The patient survey satisfaction rating for asthma, gout and hypothyroidism was 93.1%, 93.9% and 89.2% respectively. Patient suggestions for improvement included three dominant themes: better assessment of disease control, education about their chronic disease and implementation of a clearer referral process. The study concludes that disease control can be achieved if patients are educated about their chronic disease and regularly followed up to assess disease control based on standard management guidelines. Patients' disease education was a major contributing factor for satisfaction rating bias. The study confirms that in spite of high satisfaction ratings, patients are not optimally managed with substandard disease control. It would be expected that as disease education improves, the quality of care will improve, but satisfaction ratings will decrease.

Background The number of people in Sub-Saharan Africa dying of heart failure is increasing. However, little is known about their experiences and needs. In Kenya, palliative care services are available for some people with cancer and HIV/AIDS, but these services may not be configured to meet the needs of patients dying with heart failure. Aims and objectives This study aimed to explore the experiences of patients living and dying with heart failure in Kenya. Specifically, it sought to understand how patients describe their illness experience, their experience of receiving treatment and care, and their perspectives on how their care could be improved. Methods Twenty patients admitted and diagnosed with advanced heart failure were purposively recruited from a rural district hospital. Serial in-depth interviews were conducted with patients at 0, 3 and 6 months after recruitment. Bereavement interviews were carried out with carers. All interviews were conducted and recorded in the local language of Kiswahili, transcribed into English and analysed thematically with the assistance of Nvivo software. Results Forty-four interviews were conducted. Three significant phases were identified in patients’ experience (i) coming to a diagnosis, (ii) living with heart failure and (iii) dying with heart failure. Before receiving the diagnosis of heart failure, many patients were mistakenly misdiagnosed with common serious infectious conditions such as pneumonia, tuberculosis, and malaria. Once treatment commenced and physical symptoms abated, many patients were hopeful of a full recovery, unaware that there would be a progressive deterioration in their health. Social relationships were a source of encouragement but were strained by the accumulating cost of care. Patients particularly those who were younger, felt anxious or depressed when symptoms failed to improve with treatment. Uncertainty was prevalent and underlay patients’ experiences from the time of diagnosis to the end of life. Very few patients spoke about the possibility of death believing that life and death are in the hand of God. Majority of patients had poor understanding of their illness and expressed a need for more information and better communication with health professionals. Conclusion Patients with advanced heart failure in Kenya have significant unmet physical, psychological, social, spiritual, financial, and information needs. Patients’ narratives pointed to how they could benefit from a holistic approach aimed at catering for their multidimensional wellbeing. There is need to improve patients access to information and support better communication with health professionals. Chronic disease management aimed at (i) early identification of patients (ii) improving treatment and care guidelines and (iii) promoting primary and secondary prevention to identify, treat and control common risk factors for heart failure is needed.

Background: Health care needs to evolve to meet the needs of people living with HIV as they age and become a more diverse population. For HIV and other conditions, physician specialty and experience are often positively associated with disease-specific outcomes but negatively associated with primary care outcomes. The objectives of this thesis were to: 1) assess comorbidity prevalence among people living with HIV in Ontario; 2) describe the type and extent of care by physician specialty; 3) use a theoretical shared primary/specialist care typology to characterize this care; 4) measure the quality of care delivered related to this typology; and 5) assess the independent effect of family physician HIV experience. Methods: Population-based data were used to describe a cohort of 14,282 individuals living with HIV in Ontario. Health care visits to this cohort were categorized by physician specialty, physician HIV experience, and HIV-related versus HIV-unrelated care. A theoretically-based typology of care was developed by linking patients to usual family physicians and to HIV specialists with 5 possible patterns of care. Prevention and chronic disease management adherence, antiretroviral (ART) prescribing, and health care utilization were compared across typology models using multivariable hierarchical logistic regression analyses. The independent effect of family physician experience was also examined. Results: People with HIV had significant comorbidity. Family physicians provided the majority of care. Five patterns of care were described: exclusively primary care (45.4%); specialist-dominated co-management (30.7%); family physician-dominated co-management (10.1%); low engagement (8.6%); and exclusively specialist care (5.3%). After adjustment, HIV patients in exclusively specialist care had lower odds of colorectal cancer screening but higher odds of receiving ART. Odds of having an emergency department visit did not differ among models. Among HIV patients seeing only family physicians, those linked to family physicians with high HIV experience were significantly more likely to receive ART than those with lower HIV experience. Discussion: People with HIV in Ontario have substantial comorbidity. A typology of shared care between family physicians and HIV specialists had a strong influence on the quality of care delivered. These findings have important policy and practice implications and support emerging evidence that multi-specialty expertise is required to address the care needs of this population.

Thesis(Ph.D.(Medical Science)) -- University of Limpopo, 2016 / Background: Chronic disease management (CDM) is an approach to health care that keeps people as healthy as possible through the prevention, early detection and management of chronic diseases. This approach offers holistic and comprehensive care, with a focus on rehabilitation, to achieve the highest level of independence possible for individuals.The aim of this study was to develop an integrated, evidence-based model for the management of chronic non-communicable diseases in a rural community of the Limpopo Province, South Africa. Methods: The study was conducted at Dikgale Health and Demographic Surveillance System (HDSS) site is situated in Capricorn District of Limpopo Province in South Africa. This study followed mixed methods methodology with an aim on integrating quantitative and qualitative data collection and analysis in a single study to develop an intervention program in a form of model to improve management of chronic diseases in a rural area. Therefore, this included literature review and WHO STEPwise approach to surveillance of NCD risk factors for quantitative techniques and focus group discussions, semi-structures interviews and quality circles for qualitative techniques. In the surveillance of NCD risk factors standardised international protocols were used to assess behavioural risk factors (smoking, alcohol consumption, fruit and vegetable consumption, physical activity) and physical characteristics (weight, height, waist and hip circumferences, and blood pressure). A purposive sampling method was used for qualitative research to determine knowledge, experience and barriers to chronic disease management in respect of patients, nurses, community health workers (CHWs), traditional health practitioners (THPs) and managers of chronic disease programmes. Data were analysed using STATA 12 for Windows, INVIVO and Excel Spreadsheets. Results: The study revealed that epidemiological transition is occurring in Dikgale HDSS. This rural area already demonstrates a high burden of risk factors for non-communicable diseases, especially smoking, alcohol consumption, low fruit and vegetable intake, physical inactivity, overweight and obesity, hypertension and dyslipidaemia, which can lead to cardiovascular diseases. The barriers mostly mentioned by the nurses, patients with chronic disease, CHWs and THPs include lack of knowledge of NCDs, shortages of medication and shortages of nurses in the clinics which cause patients to stay for long periods of time in a clinic. Lack of training on the management of chronic diseases, supervision by the district and provincial health managers, together with poor dissemination of guidelines, were contributing factors to lack of knowledge of NCDs management among nurses and CHWs. THPs revealed that cultural insensitivity on the part of nurses (disrespect) makes them unwilling to collaborate with the nurses in health service delivery. x The model developed in this study which was the main aim of the study describes four interacting system components which are health care providers, health care system, community partners and patients with their families. The main feature of this model is the integration of services from nurses, CHWs and THPs including a well-established clinical information system for health care providers to have better informed patient care. The developed model also has an intervention such as establishment of community ambassadors. Conclusion: Substantially high levels of the various risk factors for NCDs among adults in the Dikgale HDSS suggest an urgent need for adopting healthy life style modifications and the development of an integrated chronic care model. This highlights the need for health interventions that are aimed at controling risk factors at the population level in order to slow the progress of the coming non-communicable disease epidemic. Our study highlights the need for health interventions that aim to control risk factors at the population level, the need for availability of NCD-trained nurses, functional equipment and medication and a need to improve the link with traditional healers and integrate their services in order to facilitate early detection and management of chronic diseases in the community. The developed model will serve as a contribution to the improvement of NCD management in rural areas. Lastly, concerted action is needed to strengthen the delivery of essential health services in a health care system based on this model which will be tasked to organize health care in the rural area to improve management and prevention of chronic illnesses. Support systems in a form of supervisory visits to clinics, provision of medical equipments and training of health care providers should be provided. Contribution from community partners in a form of better leadership to mobilise and coordinate resources for chronic care is emphasized in the model. This productive interaction will be supported by the district and provincial Health Departments through re-organization of health services to give traditional leaders a role to take part in leadership to improve community participation. / Medical Science Department, University of Limpopo in South Africa,International Health Unit, and Antwerp University

Indiana University-Purdue University Indianapolis (IUPUI) / With an estimated 30.2 million diagnosed and undiagnosed cases among adults (and another 84 million at risk), diabetes mellitus is one of the most prevalent chronic conditions and a leading cause of mortality in the US. Diabetes self-management education and training (DSME/T) is a recognized standard of care and provides patients with the requisite knowledge and skills to properly manage the condition, improve long-term health outcomes, and reduce health care expenditures. Yet, DSME/T is greatly underutilized. Health insurance coverage that does not include benefits for DSME/T effectively imposes barriers to access for patients in need of the service. Many states have adopted laws and regulations requiring public and/or private insurers in their market to provide benefits for DSME/T; however, these requirements vary by state. It is unclear if these policies effectively improve access to DSME/T services. This dissertation seeks to rigorously assess the impact of state-mandated benefits and reimbursement provisions on access to DSME/T among adult patients with diabetes. The first analysis utilizes a unique combination of legal and programmatic data to quantify changes in the supply of DSME/T resources after the adoption of state-mandated benefits (potential access). The second analysis merges legal data with the Medical Expenditure Panel Survey (MEPS) from 2008 to 2016 to examine the impact of state mandates and reimbursement provisions on patient utilization of DSME/T (realized access). Lastly, the final analysis utilizes electronic health record data (2010-2016) from a safety net population to determine if patients’ evaluated need for DSME/T predicts the likelihood of receiving a DSME/T referral during a provider encounter (equitable access). Using novel data sources and a sophisticated policy analysis technique, this study provides a rigorous assessment of the impact of decades of state policies designed to improve access to care. / 2020-04-02

Submitted by William Justo Figueiro (williamjf) on 2015-08-20T19:00:53Z No. of bitstreams: 1 24e.pdf: 2612397 bytes, checksum: b639cb23c503f86dd9560fcf6386dde4 (MD5) / Made available in DSpace on 2015-08-20T19:00:53Z (GMT). No. of bitstreams: 1 24e.pdf: 2612397 bytes, checksum: b639cb23c503f86dd9560fcf6386dde4 (MD5) Previous issue date: 2013 / CAPES - Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / PROSUP - Programa de Suporte à Pós-Gradução de Instituições de Ensino Particulares / De acordo com a Organização Mundial de Saúde, doenças cardíacas, doenças respiratórias crônicas, câncer e diabetes são as doenças crônicas não transmissíveis mais comuns, assim como uma das principais causas da mortalidade no mundo. Nesses casos é necessário mais do que o engajamento do paciente no auxílio ao cuidado destas doenças. O apoio da comunidade e das organizações de saúde também é desejável. Estes devem apoiar os pacientes em suas atividades de autogerenciamento, fazendo-os sentirem-se confiantes e motivados. A computação ubíqua dá condições para ajudar os pacientes de doenças crônicas na gestão de suas atividades, oferecendo-lhes apoio a qualquer hora, em qualquer lugar. O presente trabalho apresenta o U’Ductor, um modelo para cuidado ubíquo de doenças crônicas não transmissíveis, cujo objetivo é facilitar a integração entre pacientes e recursos da comunidade e organizações de saúde. O U’Ductor dá um passo a frente em relação aos trabalhos estudados ao integrar pacientes, membros da comunidade e organizações de saúde, e recursos da comunidade e organizações de saúde. Tais características não foram exploradas nos trabalhos estudados da maneira como é feita no U’Ductor. Um protótipo do modelo foi avaliado por pacientes crônicos que deram pareceres positivos em relação a sua aplicabilidade nas atividades de cuidado de doenças crônicas não transmissíveis. / Accordingly with the World Health Organization, heart disease, chronic respiratory diseases, cancer and diabetes are the most common non-communicable diseases and one of the leading causes of the mortality in the world. In such cases we need more than patient engagement to help to control of the disease, community and health organizations support is also desirable. These roles must support the patients self-management activities, making them feel confident and motivated. This support can be accomplished by ubiquitous computing. The ubiquitous computing gives conditions to help chronic diseases patients in the management of their activities, offering support to them anytime, anywhere. This work presents U’Ductor, a model for supporting ubiquitous non-communicable disease care, whose goal is to help the integration between patient and community resources. The U’Ductor gives a step forward in relation to the studied related works by integrating patients, community resources and community members. Those features were not completely explored in the studied works in the way it’s employed in U’Ductor. An implementation of the model was evaluated by chronic patients, which had given a positive feedback about it.

Management of chronic disease requires a different service delivery model from that of acute illness. The uninsured population experience poorer health status and increased incidence of chronic disease than do the insured population. The purpose of this study was to identify the supports and barriers present in providing chronic disease management to patients at Ohio free clinics. Wagner's theory of chronic disease management served as the theoretical lens. The sequential, exploratory mixed methods study collected data from 13 free clinics belonging to the Ohio Association of Free Clinics (OAFC). Quantitative questions focused on processes in clinics with high and low fidelity to the chronic care model (CCM) determined by the Assessment of Chronic Illness Care (ACIC) survey. A backwards stepwise logistic regression was used. The quantitative analysis determined the 3 highest and lowest scoring clinics on the ACIC survey who then participated in a 2 tiered multi-case study series. Qualitative questions examined supports present in high fidelity clinics and barriers present in clinics with low fidelity. Qualitative findings identified 5 support areas that centered on progressive vision and patient-centered care themes that existed in high fidelity clinics. Four barriers were identified in low fidelity clinics that focused on the theme of capacity building. These findings provide evidence to guide the OAFC's work in improving adherence to the CCM constructs, thereby elevating the quality of care to the uninsured with chronic disease to the level of those providers governed by accrediting organizations. Changes in quality of care may result in an improvement to the health status of the individual and the communities in which they live.