Chronic conditions negatively impact well-being, and the negative impact of a chronic condition can extend beyond the diagnosed person to his or her spouse. This association may be further influenced by gender, as gender can shape how individuals experience their own chronic conditions-- including what conditions they develop-- and how they react to the conditions and distress of their spouses. In my dissertation, I examine how one spouse’s chronic conditions are related to the other spouse's psychological distress over time. I address this using quantitative analysis of the Health and Retirement Study and qualitative analysis of in-depth interviews. In my quantitative analysis, I find that the association between one spouse’s chronic conditions and the other spouse’s distress differs by gender, number of conditions, whether one or both spouses have chronic conditions, and type of condition. Regarding number of conditions, a husband’s number of chronic conditions increases his wife’s distress more so than a wife’s number of chronic conditions increases her husband’s. These associations are mitigated by the chronically ill spouse’s own distress and functional limitations. Additionally, this gender difference is more pronounced if both spouses have chronic conditions compared to if only one has chronic conditions. Regarding type of condition, lung disease and stroke are the most negatively impactful for spouses’ distress, whereas high blood pressure, cancer, and arthritis are not related to spouses’ distress. All conditions, except for stroke, relate to husbands’ and wives’ distress similarly, but a husband's stroke increases a wife's distress initially whereas the wife's stroke increases the husband's distress over time. In my qualitative analysis, I find that when women are chronically ill, they continue to emotionally care for their husbands, which likely protects their husbands from psychological distress but exacerbates women’s own distress. My results point to the importance of promoting the psychological well-being of both spouses during periods of chronic conditions. This is especially critical for spouses of people with more than one condition, chronically ill women whose husbands are also chronically ill, and spouses of people experiencing stroke and lung disease. / text

Class of 2016 Abstract / Objectives: To describe the patterns of benzodiazepine use at a community health center in adults and to identify common demographic factors and chronic conditions that are associated with an increased usage rate. Subjects: Patients 18 years and older who had been treated at El Rio Community Health Center with an active benzodiazepine prescription on file. Methods: Data were collected from patient charts using a data collection form. Assessment included current benzodiazepine patients were taking, concurrent use of opiates and/or antispasmotics, indication for benzodiazepine use, concurrent medications for anxiety, depression, or insomnia, and prescriber type. Demographic data on age, gender, race, ethnicity, insurance type, and use of tobacco or alcohol were also collected. Results: Data were collected on 102 patients currently taking a benzodiazepine; 60 patients (mean age = 61.2, SD = 13.6) had concurrent first-line therapy for anxiety, depression, or insomnia and 42 patients (mean = 61.1, SD = 13.6) did not. There were a significantly higher proportion of women taking a benzodiazepine with first-line therapy than without first-line therapy (88.3% vs. 71.4%; p = 0.031). Additionally, higher proportion of benzodiazepine was prescribed with first-line therapy for depression than other indications (p = 0.002). Conclusions: More patients were prescribed benzodiazepines with concurrent first-line therapy for depression than other indications such as anxiety, insomnia, or other panic disorders. For this reason, health care professionals should be aware of the patterns of benzodiazepine use and comply with current recommended practice guidelines.

Background. Type 1 diabetes requires intensive management, including blood glucose monitoring, carbohydrate counting and dietary modification, and administering insulin. When a child is diagnosed with type 1 diabetes, family dynamics are often altered as family schedules revolve around care for the child with diabetes. In addition, siblings face unique challenges as they become involved in the care of the child with type 1 diabetes. Therefore, it is important to understand experiences of siblings of youth with type 1 diabetes. Aims and Objectives. To identify experiences of siblings of children with type 1 diabetes from their own perspectives. Sample. As part of a larger IRB approved study, 51 children and adolescents ages 8-18 years with diabetes (M = 13.18), who have a sibling ages 8-18 years (M = 12.6), were recruited from diabetes summer camps and the diabetes clinic at a regional medical center. Methods. A qualitative descriptive design was used to ascertain experiences of siblings of youth with T1DM using semi-structured, scripted interviews. Interviews were audio recorded, transcribed verbatim, and analyzed for common themes according to qualitative methodology. Results. Common themes emerging from the data are: (1) knowledge about type 1 diabetes – how it was obtained and what more siblings wanted to know; (2) feelings experienced; (3) sibling relationship – the impact of diabetes on the relationship; and (4) involvement in diabetic care. Implications. It is important for healthcare providers working with children with T1DM and their families need to be aware of and address the psychological effects of the disease on all family members. While providers cannot alleviate all challenges and fears experienced by siblings of a youth with T1DM, they can make the parents aware of the challenges siblings face, facilitate communication among family members, and help connect brothers/sisters with resources such as education, support groups, and counseling.

Background: Historically, most refugees have originated from countries with high rates of infectious diseases. However, non-communicable diseases are becoming increasingly more common in refugee populations resettling in the United States. Purpose: Examine the prevalence of selected chronic conditions among newly arriving adult Cuban refugees and compare the results to the prevalence of the same chronic conditions among the other top five incoming refugee populations: Burmese, Bhutanese, Iranians, Iraqis, and Somalis Methods: Data used in this study were derived from the Department of State’s Medical History and Physical Examination Worksheet and included all adult (≥20 years) Cuban, Burmese, Bhutanese, Iranian, Iraqi, and Somali refugees identified through the Center’s for Disease Control and Prevention Electronic Disease Notification Center, and who entered the United States during October 2008-September 2011. Data were analyzed using SPSS version 19.0. Descriptive statistics, chi-square analysis, and logistic regressions were performed to assess the prevalence of chronic conditions, check for associations between country of origin and outcome of interest, and to estimate the relative risk for Cubans compared to the remaining top five incoming refugee populations. Results: A total of 99,920 adults were included in the study. The largest population was Iraqi (27.6%), followed by Bhutanese (26.2%), Burmese (24.4%), Iranian (8.6%), Cuban (7.9%), and Somali (5.3%). All outcomes of interest were significantly associated with country of origin. Cubans were at a greater risk for asthma but were not the greatest at-risk population for the remaining outcomes of interest. Conclusion: The prevalence of non-communicable diseases was higher among the incoming refuges than has been traditionally assumed. These findings point to the need for a better understanding of the health status of refugee populations and the development of culturally appropriate health programs that include education on prevention and treatment of chronic conditions.

Background: Health systems internationally face a common set of challenges: ageing populations, increasing numbers of patients suffering from multiple long-term conditions (multimorbidity) and severe pressure on health and care budgets. ‘Integrated care’ is pitched as the solution to current health system challenges. But, in the literature, what integrated care actually involves is complex and contested. Aims: 1. What does ‘integrated care’ currently look like in practice in the NHS? 2. What is the effectiveness of current models of ‘integrated care’? 3. To what extent are there differential effects of ‘integrated care’ for different types of multimorbidity? Methods: The thesis utilises routinely collected data, systematic review and meta-analysis, combined with quasi-experimental methods (difference-in-differences, and subgroup analysis, difference-in-difference-in-differences). Results: The current implementation of the concept of integrated care is predominantly carried out through multidisciplinary team (MDT) case management of ‘at risk’ (usually of secondary-care admissions) patients in primary care. This approach, however, has not proven capable of meeting health outcome and utilisation/cost aims. Patient satisfaction, though, is consistently improved by the approach. There might also be positive spill-over effects of increased team-working through MDTs for the wider practice population. There does not appear to be a multimorbidity subgroup which benefits significantly more than others in terms of secondary-care utilisation or cost. However, patients at the end of life and/or those with only primary-care sensitive conditions might benefit slightly more than others. Conclusions: Integrated care, in its current manifestation, is not a silver bullet that will enable health systems to simultaneously accomplish better health outcomes for those with long-term conditions and multimorbidity while increasing their satisfaction with services and reducing costs. The current financial climate might mean that other means of achieving prioritised aims are required in the short-term, with comprehensive primary care and population health strategies employed to better prevent/compress the negative effects of lifestyle-associated conditions in the longer-term.

Chronic health conditions in youth have increased over the last several decades. It is estimated that within the United States there are between 15% to 18% of youth who are living with a chronic health condition (Centers for Disease Control and Prevention [CDC], 2010). The CDC defines a chronic health condition as an illness that lasts for three months or longer that can be managed, but not cured (CDC, 2010). Although there is some research on youth living with chronic illnesses, there are minimal studies that assess the constructs of health literacy, resiliency, and support/advocacy within this population. The current investigation was a validity study of the Health Literacy and Resiliency Scale (HLRS). This is a newly developed 37-item measure that assesses the level of health literacy, resiliency, and support/self-advocacy among chronically ill youth (Bradley-Klug, Shaffer-Hudkins, Lynn, DeLoatche, & Montgomery, 2017). Specifically, the study correlated the construct of resiliency in the HLRS with the resiliency construct from the Child Youth and Resiliency Measure (CYRM; Ungar & Liebenberg, 2011). This measure is a 28-item measure that assesses levels of resiliency among youth and young adults. The goals for this study included: 1) determining the extent to which the results of the factor analysis from the current study are consistent with the three-factor model from the original study, 2) assessing the relationship between the HLRS and the CYRM, and 3) determining the reliability (internal consistency) of the scores of the HLRS. More importantly, since there have only been preliminary analyses conducted on the psychometric properties for the HLRS, this study was the first step towards providing validation for this measure. Participants were recruited through several methods including community-based organizations and online outlets. There were a total of 226 participants, with 54% identifying as White, 31% African American, and the remaining identifying as other. Sixty-one percent were female. The participants were English-speaking with a diagnosis of a chronic health condition given at least six months prior. Some of the conditions that were frequently identified among the sample included: diabetes, HIV, lupus, cystic fibrosis, ADHD, and asthma. Individuals were asked to complete the HLRS, CYRM, and a demographic survey online. The results indicated that the reliability of the values of the three factors in the HLRS ranged from acceptable to excellent. The results also included a correlation between the scores from the HLRS and CYRM. For the HLRS there were strong correlations between the resiliency and support/self-advocacy factors and health literacy and support/self-advocacy factors. For the CYRM, there was a strong correlation (r =.954) with the resiliency factor indicating that the resiliency factor within the HLRS aligns with the resiliency construct that is measured in the CYRM. Some items on the HLRS loaded on more than one factor indicating the need for further consideration of particular items on that scale. Overall, these data provide additional support for the HLRS scale and suggest that the scale may be a step closer to being utilized in applied settings.

Therapy decision-making for patients with chronic diseases can be difficult. Such patients usually live with their illness(es) all their life, and therapies can only help them improve their condition by managing symptoms, not curing them. Patient-oriented approaches are common to caring for people with chronic conditions because patients’ priorities become relevant means of prioritizing therapies in the absence of a cure. While such type of approach is shown to be effective, it does not leverage evidence on the success of given therapies to achieve specific similar patient goals in the past. Evidence-Based Medicine (EBM) is a concept that was introduced to the medical field in the early 90s to invalidate previously accepted tests and therapies and replace them with new, more powerful, more accurate, more efficacious, and safer ones. Unfortunately, despite the prevalence of patient-oriented approaches for patients with chronic diseases, data collected on patients is not systematically leveraged to support therapy decisions. Combining evidence-based decision-making and patient-oriented approaches could potentially further improve patient outcomes by leveraging the most up-to-date data to recommend and discuss therapy options for patients with chronic conditions. The development and implementation of Learning Health Systems (LHS) is another solution to improving patient outcomes, one that the US Institute of Medicine strongly recommends. The development and implementation of a LHS to support therapy choice for patients with chronic conditions could improve related decisions by fostering continuous learning regarding which therapy may help better achieve which patient goals. However, a learning process that systematically leverages a relevant basis of evidence to support patient-oriented approaches has yet to be defined. As such, this study aims at articulating a learning process for therapy decision-making in the context of chronic conditions. The result is framework and a demonstration of its application using the Goal Attainment Scale (GAS) and synthetic data.

This dissertation is comprised of three essays, the goals of which are to provide an empirical understanding of how the income-health relationship evolves with child age and the underlying mechanisms. Previous research, conducted in US and Canadian settings, has found a positive association between household income and child health, which strengthens with age. One reason for this relationship may be that low-income children are more likely to suffer from chronic conditions than high-income children. While US research has controlled for the effects of parental health when examining the gradient, Canadian work has not. In Chapter 1, we seek to determine whether the Canadian findings persist after controlling for parental health status. Our results show that this adjustment reduces the size of the gradient in childhood and, importantly, indicates that it does not increase with age. In Chapter 2, we contribute to this literature by applying more flexible estimation techniques, namely nonparametric models, to understand the gradient in childhood. Our results provide evidence that our nonparametric model is closer to the true data generating process than the parametric model. Furthermore, our estimates confirm that the gradient does not increase with age, regardless of whether we control for parental health. In Chapter 3, we examine the relationship between family income, chronic conditions and child health. Generally, our results suggest that income does not have a significant impact on chronic conditions. Furthermore, we do not find the effect of chronic conditions on the probability of being in poor health differs by income levels, with the exception of asthma and mental handicap. / Thesis / Doctor of Philosophy (PhD)

By 2015, 149 million Americans are expected to be living with chronic health conditions (Anderson 2010). This number is expected to continue rising. Many chronic health conditions require those living with them to perform health self-management tasks on a regular basis. Nearly two in every five adults with one chronic condition and three out of every five adults with at least two chronic conditions track their health information. This paper investigates the use of mobile applications and the need to develop applications specifically designed for individuals living with chronic health conditions. Pew data are used to determine who is tracking their health information and how they are tracking it. Results from this analysis show that individuals with chronic health conditions have 69% greater odds of tracking health information than individuals who do not live with chronic conditions. Additionally, those with chronic conditions are 254% more likely than those without chronic conditions to track health indicators that are not related to diet, weight or exercise. These individuals are not, however, using mobile applications to track their health information. People with chronic health conditions have higher probabilities of tracking health information on paper or in their heads than their probability of tracking via a mobile application. However, the probability that individuals track health information via mobile apps increases when analyzing a subset of the population who own smartphones. After learning more about individuals with chronic conditions and their health information tracking habits, several mobile health applications are reviewed. The reviews of these applications include the features offered by the applications and their price. The paper concludes with several recommendations for developing and disseminating mobile health tracking applications to individuals with chronic conditions, as well as suggestions for future research. / text

Nos modelos conceituais sobre Qualidade de Vida (QV), geralmente temos encontrado, como enfoque central, a percepção do indivíduo sobre suas experiências e a satisfação em relação a diferentes áreas da vida. QV é então assumida como um conceito subjetivo. Instrumentos para sua mensuração têm sido desenvolvidos e as validações transculturais são processos importantes, relacionados à validade e confiabilidade das versões adaptadas possibilitando que os resultados possam ser comparáveis entre diferentes culturas. Este estudo metodológico teve como objetivo analisar o conteúdo do questionário DISABKIDS 37 da perspectiva dos respondentes e descrever sua tradução mexicana, adaptação cultural e validação em um estudo piloto, com vistas à primeira análise psicométrica para simulação do teste de campo. O método utilizado foi o transversal conduzido em hospitais pediátricos do México em uma amostra acidental de 47 crianças/adolescentes com asma ou epilepsia, com idades entre 8 e 18 anos e seus pais ou cuidadores. A validação semântica foi observada por meio do entendimento das crianças em relação aos itens do questionário DISABKIDS 37, a consistência interna mostrou resultados adequados para o total (0,93/0,95 crianças/cuidadores) e as dimensões do instrumento. Intercorrelações entre as sub-escalas indicaram correlações significantes umas com as outras. O DISABKIDS 37 discriminou bem entre as condições e severidade. Foram encontradas correlações moderadas entre as versões crianças e pais para todas as dimensões da escala. A dimensão Tratamento foi exceção, com concordância fraca. Em relação ao escore geral, a concordância foi forte. Como conclusões as versões finais do DISABKIDS 37 para o México foram fáceis de entender e poderão ser utilizadas como instrumentos úteis para análise da Qualidade de Vida Relacionada à Saúde (QVRS) em crianças e adolescentes com condições crônicas. / Generally, we find as the main focus in the conceptual models about Quality of Life (QoL), the individual perceptions on one?s experiences and satisfaction regarding different areas of life. QoL is assumed as a subjective concept. Instruments for its measurement have been developed and its transcultural validations are important processes, related to the validity and reliability of the adapted versions, which allow the results to be comparable between different cultures. This methodological study aimed to analyze the content of the questionnaire DISABKIDS 37 from the perspective of the respondents and describe its Mexican translation, cultural adaptation and validation of a pilot study as a first psychometric analysis for the simulation of the field test. The method used was the cross-sectional carried out in pediatric hospitals in Mexico in an accidental sample of 47 children/adolescents with asthma or epilepsy, age between 8 and 18 years old and their parents or caregivers. The semantic validation was observed through the understanding of children regarding the items of the DISABKIDS 37 questionnaire, the internal consistency showed adequate results for the total (0.93/0.95 children/caregivers) and the instruments dimensions. Intercorrelation between the sub-scales indicated significant correlations with one another. The DISABKIDS 37 discriminated between conditions and severity. Moderated correlations were found between versions children and parents for all the dimensions of the scale. The dimension Treatment was an exception, with weak concordance. Regarding the general score, the concordance was strong. Concluding, the final versions of the DISABKIDS 37 for Mexico were easy to understand and can be used as useful instruments for the Health Related Quality of Life (HRQL) analysis in children and adolescents with chronic conditions.