The effects of acupuncture on mental wellbeing in chronically ill patients II Department of Social and Clinical Pharmacy, Faculty of Pharmacy in Hradec Králové, Charles University in Prague Student: Ivana Chuová Tutor: PharmDr. JitkaPokladníková, Ph.D Introduction: Traditional Chinese Medicine (TCM), including acupuncture, is widely used in the treatment of chronically ill patients, whose numbers are increasing. This treatment is widely used either alone or as a supplementary method. Though, more attention should be given to the research of TCM effectiveness in studies. Objective: To assess the effect of selected sociodemographic and clinical variables such as age, gender, size of residence, type of musculoskeletal disorders and concomitant use of Chinese phytotherapy on the alteration in personal well-being and pain in patients with musculoskeletal disorders, who underwent the acupuncture therapy at the Czech-Chinese Centre of TCM University Hospital Hradec Králové (FNHK). Methods: The Evaluation of patients' personal well-being from the data obtained by using WEMWBS and Visual Analogue Scale (VAS) questionnaires. The patients were undergoing therapy at the Czech-Chinese TCM FNHK Centre. The process of the Data collection from questionnaires took place in the period from 7 April 2017 to 12...

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Thèse numérisée par la Direction des bibliothèques de l'Université de Montréal.

Chronic illnesses, particularly poorly understood and complex conditions like endometriosis, present significant challenges for patients and healthcare providers. Endometriosis is a systemic, multifactorial condition affecting approximately 6–10% of women of reproductive age. It is characterized by highly variable and unpredictable symptoms, a lack of biomarkers, no cure, and individualized responses to treatment. This requires significant patient-provider collaboration and ongoing self-management. Despite advances in artificial intelligence (AI) and personal informatics systems for managing chronic illness, limited support exists for complex conditions like endometriosis, where significant uncertainty and variation impede care and management. This dissertation seeks to understand the needs of individuals faced with the complex chronic illness that is endometriosis and address those needs, particularly through leveraging patient-generated data and personal informatics tools to support care. Throughout this work, we take a human-centered AI (HAI) approach to promote the perspectives of individuals and align their needs and priorities with the capabilities of the technologies we use. In this research, we first document the work of patients and providers in caring for such a complex chronic illness, and elicit the data and technology needs of patients and providers (Aim 1). There, qualitative research methods, including focus groups and interviews, reveal that patients and providers face barriers in synthesizing complex health data, aligning perspectives, and navigating individualized management pathways. Next, we develop and evaluate interpretable temporal phenotypes of health status (Aim 2). There, we use a probabilistic modeling approach to generate interpretable, temporal phenotypes of health status from self-tracked data, then validate these health status representations through user feedback and a real-world computational task. Finally, we identify human and technical specifications for an intelligent system that provides adaptive self-management recommendations using reinforcement learning (RL) (Aim 3). There, we propose and implement a novel HAI framework, which facilitates conducting a mixed-methods study where we map and align human needs and values with technical capabilities and requirements. This research can inform the development of adaptive, explainable, and personalized self-management recommendations. Findings from this dissertation demonstrate the potential of computational approaches and novel intelligent systems to empower individuals with endometriosis by augmenting their understanding and use of their health-related data and self-management efforts with data-driven insights and AI-enabled intelligent systems. This dissertation has several important contributions. First, this work both leverages and advances human-centered AI. The introduction of the Multi-Perspective Directed Analysis (MPDA) framework provides an approach to bridge human and technical needs in the design of AI-enabled systems. By aligning insights from end-users with the specifications of data science, MPDA operationalizes an HAI approach to design, offering a reproducible approach for other researchers seeking to address similar interdisciplinary challenges. This framework highlights the potential of HAI in translating patient needs into actionable computational design requirements and provides a blueprint for tackling open questions in health and other domains through human-centered AI. We also elaborate on several HAI principles, for example, how to empower patients through control of intelligent systems. Second, this dissertation contributes to advancing personal informatics technologies. We have documented a range of technology gaps and opportunities to innovate solutions to address these gaps. The development of interpretable, temporal representations of health status and the requirements gathering for an AI-enabled personal informatics tool for individualized recommendations are both novel contributions. These innovations expand the literature on chronic illness support, particularly by demonstrating the potential of AI in addressing a particular real-world, complex health scenario. We also highlight and articulate several sociotechnical gaps where technologies cannot meet the complex needs of users at this time. Despite the barriers in translating these technologies into practical systems, this work explores how AI can enhance chronic disease management through pragmatic, user-centered solutions. Finally, we advance illness-specific endometriosis research. This dissertation addresses an illness context with significant gaps in research and technologies to support care and management. By identifying the complex work undertaken by patients and providers in care and the associated needs of patients and their care teams, this research provides a foundation for designing tools and systems tailored to this context. While we propose HAI solutions for some of these gaps, we also highlight additional opportunities for computational and interactive systems that could better support individuals and care teams managing endometriosis. As an ultimate goal, this thesis seeks to understand and address the needs of individuals caring for endometriosis, a complex and poorly understood chronic illness. In particular, we aim to develop HAI technologies to support patients and their care teams. Through the alignment of human needs and values with technological constraints, this research facilitates patient-centered care, empowers individuals with their data, and contributes to the broader fields of biomedical informatics, human-computer interactions, and human-centered AI.

This research examines the relationship between health literacy among End Stage Renal Disease (ESRD) patients and its relevance for communication between patients and providers. The study was conducted among dialysis services providers at the Good Samaritan Dialysis Center and dialysis patients receiving care at the Center. Data collection techniques included individual interviews, surveys, and the Short Test of Functional Health Literacy in Adults (S-TOFHLA), which measured the health literacy level of the participants. The results of the study show that a large majority of the patients have "adequate" health literacy, which contradicts the provider's perceptions of the patient's ability to comprehend health information. Provider's perspectives are shaped by their training and work environment. The study suggests that structural barriers and communication issues impede effective patient-provider interactions. This issue is especially serious for those chronic disease patients who have limited self-management skills. / Graduation date: 2012

Indiana University-Purdue University Indianapolis (IUPUI) / Technology dependent children such as those who require a feeding tube, tracheotomy or ventilator are a special group of chronically ill children who require complex care on a daily basis. When these children are hospitalized, the accompanying parent and the nurse caring for the child on the inpatient unit must communicate together about the care of the child. Care for the technology dependent child is optimized when parents and nurses both understand the plan of care for the child. To discover the process of parent-nurse communication that results in mutual understanding of the child’s plan of care, a grounded theory study to explore the perspectives of the parents of previously hospitalized technology dependent children was undertaken. The Theory of Shared Communication emerged from the data and illuminates the parent-nurse communication process. The antecedents of the process are respect for own and others expertise. The communication process consists of six communication behaviors; ask, listen, explain, advocate, verify understanding and negotiate roles. The behaviors are nested within each other and all are not necessarily required for the non-linear process to result in the relational outcome of mutual understanding of the child’s plan of care. An integrative review of the literature regarding the process of communication between parents of hospitalized chronically ill children and their nurses shed light on the components of the process, but no study was found that explicated the entire communication process. A subsequent grounded theory study added the perspectives of the nurses to the original theory. No new components of the process were uncovered, but the nurse’s narratives added significantly to our understanding of the communication process. Additionally, parents of currently hospitalized technology dependent children confirmed the propositions of the Theory of Shared Communication.

INTRODUÇÃO: Com a melhora do prognóstico nos pacientes com lúpus eritematoso sistêmico juvenil novas recomendações são necessárias na reumatologia pediátrica, como avaliação da saúde bucal e do sistema mastigatório. O objetivo deste estudo é avaliar o comprometimento orofacial nos pacientes com lúpus eritematoso sistêmico juvenil e grupo controle, e avaliar possíveis associações entre o comprometimento orofacial e manifestações clínicas, exames laboratoriais e terapias da doença. MÉTODOS: Entre março de 2004 e julho de 2005 foram avaliados 48 pacientes com diagnóstico de lúpus eritematoso sistêmico juvenil, atendidos na Unidade de Reumatologia Pediátrica do ICr-HC-FMUSP. O grupo controle incluiu 48 crianças e adolescentes saudáveis atendidos na Divisão de Odontologia do HC-FMUSP. A pesquisa incluiu avaliação de dados sócio-demográficos, manifestações clínicas, exames laboratoriais, atividade da doença (SLEDAI), dano cumulativo (SLICC/ACR-DI) e terapias da doença. A avaliação orofacial incluiu questionário de anamnese, índice CPO-D, índice de placa, índice de sangramento gengival, relação dentária, perfil facial, índice de Helkimo e avaliação da articulação temporomandibular através da radiografia panorâmica de face em todos os pacientes e tomografia computadorizada apenas nos casos com achatamento e/ou destruição dos côndilos mandibulares. RESULTADOS: Os dois grupos foram homogêneos com relação à faixa etária, distribuição por gênero e classe sócio-econômica. A idade dos pacientes com lúpus eritematoso sistêmico juvenil variou de 87 a 218 meses (média de 161,9±38,4) e do grupo controle de 78 a 254 meses (média de 154,4±45,8; p=0,384). As medianas dos índices de placa e de sangramento gengival nos pacientes com lúpus eritematoso sistêmico juvenil foram superiores em relação aos controles (61,5X38,1; p=0,003 e 26,0X15,95; p=0,014). O índice de disfunção clínica e o índice de mobilidade mandibular mostraram-se mais alterados nos pacientes com LESJ versus controles (p=0,002, p=0,025). Correlação linear estatística foi evidenciada entre: tempo de doença e índice de sangramento gengival (p=0,017; r=0,11), dose cumulativa de prednisona e índice de placa (p=0,010, r=0,385) e dose cumulativa de prednisona e índice de sangramento gengival (p=0,001, r=0,02). A mediana do índice de mobilidade mandibular foi superior nos pacientes com lúpus eritematoso sistêmico juvenil em uso de um ou mais imunossupressores em relação aos que não utilizaram estas drogas (p=0). Apenas dois pacientes apresentaram radiografia panorâmica com achatamento e/ou destruição dos côndilos mandibulares e na tomografia computadorizada de ATM os achados foram: redução do espaço articular bilateralmente, erosões dos platôs articulares com aplainamento dos côndilos sugestivo de necrose avascular da articulação temporomandibular. CONCLUSÕES: Os pacientes com lúpus eritematoso sistêmico juvenil apresentaram uma precária higiene oral, maior freqüência de gengivite e disfunção da articulação temporomandibular em relação ao grupo controle. Os pacientes com maior tempo de doença e maior dose cumulativa de prednisona tiveram maior freqüência de gengivite e os que utilizaram imunossupressores apresentaram disfunção da articulação temporomandibular / INTRODUCTION: Given the enhanced prognosis of patients with juvenile systemic lupus erythematosus, new recommendations are necessary in pediatric rheumatology, such as the analysis of oral health and the masticatory system. The aim of this study was to compare dental and facial conditions of patients with juvenile systemic lupus erythematosus and a control group, and to evaluate a potential relationship between dental and facial endangering and clinical manifestations, laboratory tests and therapies for the disease. PATIENTS AND METHODS: A total of 48 children and adolescents with juvenile systemic lupus erythematosus attending the Pediatric Rheumatology Unit of the Children\'s Institute of our University Hospital were studied between January 2004 and July 2005. The control group included 48 healthy children and adolescents that were selected from the Odontology Division of our University Hospital. The search included the analysis of social and demographic data, clinical manifestations, laboratory tests, juvenile systemic lupus erythematosus disease activity and cumulative damage (using the SLEDAI and the SLICC/ACR-DI), and therapies. The dental and facial examination included the anamnesis questionnaire, DMFT index, plaque and gengival bleeding index, dental relationship, facial profile, Helkimo\'s index and evaluation of the temporomandibular joint through a radiographic panoramic examination of all patients and a computer tomography on those with flattening and/or destruction of the mandibular condyles. RESULTS: The two groups were homogeneous regarding age, gender and social-economic class. The age of the juvenile systemic lupus erythematosus patients ranged from 87 to 218 months (mean of 161.9±38.4) and of the control group from 78 a 254 months (mean of 154.4±45.8; p=0.384). The medians of the plaque and gingival bleeding indexes were higher in juvenile systemic lupus erythematosus patients than in the control group (61.5X38.10; p=0.003 and 26.0X15.95; p=0.014). The indexes of clinical dysfunction and mandibular mobility were higher in juvenile systemic lupus erythematosus patients versus the control group (p=0,002, p=0,025). A linear statistical correlation was evidenced between: juvenile systemic lupus erythematosus duration and the gingival bleeding index (p=0.017; r=0.11), cumulative dose of prednisone and the plaque index (p=0,010; r=0.385) and cumulative dose of prednisone and the gingival bleeding index (p=0.001, r=0.02). The median of the mandibular mobility index was higher in juvenile systemic lupus erythematosus patients that used at least one imunossupressive drugs compared with those that didn\'t use this medication (p=0). Only two patients showed a panoramic radiography with flattening and/or destruction of the mandibular condyles. The computer tomography revealed: narrowing of joint spaces bilaterally and erosions of joints plateaus with flattening of condyles that suggested avascular necrosis of temporomandibular joint. CONCLUSIONS: Juvenile systemic lupus erythematosus patients presented poor oral hygiene, higher incidence of gingivitis and temporomandibular joint dysfunction compared to the control group. Patients with longer disease duration and higher cumulative dose of prednisone had a greater incidence of gingivitis, and those who used imunossupressives drugs showed temporomandibular joint dysfunction

The continued development of the American health care system and evolving technology have led to an increased life expectancy within the general population. In fact, these advancements have also resulted in growing numbers of young people with chronic illnesses living into adulthood. Approximately one third of children ages 10-17 have a chronic disease, and the vast majority of these children will survive beyond their 20th birthday (Blum, 1995; Lotstein, McPherson, Strickland, & Newacheck, 2005; White, 2002). The main objective of this study was to explore the healthcare transition (HCT) practices of health care providers and the HCT experiences of chronically ill young adults living with sickle cell disease, cystic fibrosis, and/or diabetes. Meleis, Sawyer, Im, Hifinger Messias, & Schumacher’s (2000) theory on transition and Boykin and Schoenhofer’s (2001) theory of Nursing as Caring provided the theoretical lenses throughwhich study findings were viewed. This was a descriptive exploratory mixed methods design that consisted of survey data and used conventional content analysis to analyze the qualitative data. The quantitative portion of this study incorporated a 41-question survey that was completed by 33 health care providers working with chronically ill young adults in the southeast Florida region. Additionally, semi-structured interviews were conducted with eight young adults (18-24 years of age) living with a sickle cell disease, cystic fibrosis, and/or diabetes. Five themes emerged from an analysis of the data describing the healthcare transition (HCT) experience: Transition Confusion, Familial Reliance, Lost in Transition, Fiscal Stressors, and Transition Uneasiness. The findings of this study demonstrate that there are, at minimum, three general parts of the HCT process that remain deficient: educational preparation, consistent communication between all parties involved in the HCT process, and guidance for the independent negotiation of the present healthcare system. Recommendations for healthcare providers that work with chronically ill young adults include establishing a HCT framework that incorporates consistent communication among team members and patients/families, individualized educational formats, and guidance for navigational skills to negotiate the healthcare system. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2014. / FAU Electronic Theses and Dissertations Collection

Conclusions. The growing epidemic of type 2 diabetes and its cardiorenal complications place a major burden on our health care system. Diabetic kidney disease is of particular importance in Asian populations including Chinese. In this series of studies, using a large prospective cohort established since 1995, I confirmed the powerful predictive value of albuminuria on cardio-renal complications. Inhibition of the RAAS interacted with both modifiable and genetic factors, notably the ACE I/D polymorphism, on the development of cardio-renal complications. In addition, it was found that CKD predicts CVD independent of albuminuria. Based on two prospective studies, I confirmed the effectiveness of global risk-factor control using structured care protocol to prevent these devastating complications. (Abstract shortened by UMI.) / I then examined the possible independent and interactive effects of CKD and albuminuria on cardio-renal outcomes in the original cohort of 5,004 patients. Glomerular filtration rate was estimated (eGFR) by the Modification of Diet in Renal Disease equation. The frequency of CKD as defined by eGFR <60ml/min/1.73m 2 was 15.8% in the cohort at baseline, when 6% of patients had serum creatinine ≥150mumol/L. / In collaboration with colleagues, I have conducted a series of studies to examine the prognostic factors for cardio-renal complications in Chinese type 2 diabetic patients. The modulating effects of RAAS inhibition and the effectiveness of rnuitidisciplinary care to prevent ESRD are also examined. / Research Hypotheses. (1) Albuminuria is a prognostic factor on cardio-renal outcomes in type 2 diabetes patients; (2) Chronic Kidney Disease is associated with other metabolic risk factors and phenotypes and is a prognostic factor on cardio-renal outcomes in type 2 diabetes patients; (3) Angiotensin-converting-enzyme insertion/deletion polymorphism is a prognostic factor on cardio-renal outcomes in type 2 diabetes patients, and has an effect on treatment responses with RAAS blockage with ACE inhibitors; (4) Structured care models by risk stratification using various prognostic factors and adherence to care protocol can improve cardio-renal outcome in type 2 diabetes patients. / Results. In a prospective cohort of 5,004 patients, I examined the effect of albuminuria and ACE inhibition on survival and cardio-renal outcomes in 3,773 patients who had been observed for at least 6 months with a mean follow up period of 35.8 months. / Taken together, measurement of serum creatinine alone without GFR estimation may underestimate the frequency of CKD in Chinese type 2 diabetic patients. Estimated GFR was inversely associated wit-29h an increasing frequency of micro- and macrovascular complications cross-sectionally and an increased risk of all-cause mortality prospectively, independent of albuminuria and metabolic control. / So Wing Yee. / Source: Dissertation Abstracts International, Volume: 70-06, Section: B, page: 3422. / Thesis (M.D.)--Chinese University of Hong Kong, 2008. / Includes bibliographical references (leaves 203-243). / Electronic reproduction. Hong Kong : Chinese University of Hong Kong, [2012] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / Electronic reproduction. [Ann Arbor, MI] : ProQuest Information and Learning, [200-] System requirements: Adobe Acrobat Reader. Available via World Wide Web. / School code: 1307.