京都大学 / 0048 / 新制・課程博士 / 博士(人間健康科学) / 甲第21306号 / 人健博第62号 / 新制||人健||5(附属図書館) / 京都大学大学院医学研究科人間健康科学系専攻 / (主査)教授 黒木 裕士, 教授 恒藤 暁, 教授 坂井 義治 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

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Due to the successful rollout of the Antiretroviral Therapy Program, an increasing number of perinatally HIV infected adolescents are emerging into young adulthood throughout Botswana. Young adulthood is a critical period of human development, with long-lasting implications for a person’s economic security, health and well-being. During this time, young women and men normally complete school, find employment and start working, develop relationships, form families, bear children and pursue those things that help set them on the path to healthy and productive adult life. However, the presence of a chronic illness such as HIV can interfere with the achievement of the developmental milestones of young adulthood and affect their Health Related Quality of Life (HRQOL). The purpose of this study was to identify the factors that affected the HRQOL of young adults living with perinatally acquired HIV (YALPH) and to propose policy guidelines to promote their HRQOL. A mixed-methods sequential explanatory research design was used. HRQOL assessments were made using the WHOQOL-HIV BREF instrument. Data about the clinical characteristics of the respondents was obtained from medical records. In-depth interviews were conducted with a purposefully selected subsample of respondents who completed the WHOQOL-HIV BREF instrument. All the respondents were recruited from Botswana-Baylor Children’s Clinical Centre of Excellence, in Gaborone, Botswana. Data were analyzed using SPSS Inc. software version 16.0 (statistical package for social science, SPSS Inc, Chicago, IL, USA). The study population consisted of 509 YALPH including 255 (50.1%) females and 254 (49.9%) males. The mean age of the population was 21.7 (± 2.6) years (range 18-29.8 years). The majority of the respondents were single (98.1%), living in their parental homes (90.8%), neither in school nor working (47.35%) and 14% were parents (range 1-3 children). The mean duration on ART was 12.4 years (± 4.0). Based on the BMI classifications by WHO, 38.5% of respondents were underweight (BMI < 18.5 kg/m2) and 7.3% were overweight (BMI ≥ 25.0 kg/m2). Unsuppressed viral load (>400 cell/mL) occurred in 13.4% of the sample. Most respondents had good HROQL (78.4%). The highest mean HRQOL score was recorded in the Physical domain (15.4 (± 2.9) and the lowest in the Environment domain 13.8 (± 2.7). The results fitted using the multivariable logistic regression suggest the odds for good general QOL were increased amongst individuals with a higher level of education and 6 those who were employed. The odds for good general QOL were reduced for individuals with unsuppressed viral load (> 400 cells/mm2) and those who had illnesses (self-reported). The odds for good general QOL increased by almost two folds (OR = 1.97, 95% CI = (1.11 – 3.48)) when comparing respondents with higher level of education against those with lower education. The odds for good general QOL were increased for employed respondents OR = 1.73 (95% CI = (0.92 – 3.23) when compared to the unemployed group. Whereas the odds for good general QOL declined by almost two folds (OR = 0.60, 95% CI = (0.33 – 1.08)) amongst patients with VL > 400 cell/mm2 compared to those with VL < 400 cells/mm2. Also, respondents who were ill had lower odds ratios for good general QOL compared to those who were not ill (OR = 0.42, 95% CI = (0.25 – 0.70)). The results of in-depth interviews with 45 respondents showed that the majority of YALPH were in good physical health and they had positive perspectives about the future including health, completing school, finding employment, marriage and childbearing. The main sources of social support for YALPH were close family members and health care workers (HCWs). However, worries and concerns about disclosure, fear of stigma, lack of financial independence, and limited social relationships and networks were the most identified stressors that put the YALPH at risk of compromised HRQOL. Some sub-groups of YALPH were at higher risk for poor HRQOL including: young mothers, YALPH who were aging out of institutional care, YALPH with disabilities and impairments, YALPH who were neither in school nor working and YALPH with maladaptive coping strategies. Therefore, the promotion of the HRQOL of YALPH will require policies and interventions to increase educational attainment, provide employment and livelihood opportunities, promote good ART adherence and VL suppression, and effectively prevent and manage illnesses. Special attention should be paid to sub-groups of YALPH who are at increased risk of compromised HRQOL. / Health Studies / D. Litt. et Phil. (Health Studies)

Submitted in fulfillment of the requirements for the Doctoral Degree in Nursing, Durban University of Technology, Durban, South Africa, 2016. / Background An increase in the world's population of ageing people is occurring not only in developed countries but also in developing countries. In South Africa, the proportion of the population aged 50 and over increased from 14.8% in 2006 to 15% in 2009 and is predicted to be 19% by 2030. This means that the supply of services for the elderly people should match the demand at all times, otherwise the quality of life of these senior citizens will be compromised. This study aimed at developing a model that would improve the quality of life for elderly people living in the uMhlathuze and uMlalazi sub-districts of the uThungulu district, KwaZulu-Natal. Methodology A qualitative, exploratory, descriptive design was applied for this study. A semi-structured interview guide based on the Health Related Quality of Life Theory and Maslow’s hierarchy of needs was used. Random sampling was used to select the elderly participants. Purposive sampling was used for the selection of the chairpersons of non-governmental organisations, and the District Programme Manager. Audits were conducted in the clubs that elderly people with chronic disease participate in. Data analysis followed Tesch’s steps after which themes and categories were formulated. Results Three major themes that emerged from the data analysis were social well-being of elderly people, physiological factors and psychological factors. The results revealed that elderly people experience poor living conditions and suffer poverty due to a number of factors which including the high unemployment rate of their children. Often the children are involved in substance abuse using the elderly person’s money pension money, which leaves them without any food items in the household. According to the District Programme Manager, there was a project on integrated chronic disease management that was conducted at uThungulu district by the Department of Health. The integrated chronic disease management focused on the population in general of all ages, yet in this study the focus has been on elderly people, which is why the researcher developed a model to improve the QoL of elderly people, due to their unique needs. Conclusion This research study gathered information regarding social, economic, health and environmental factors in rural areas which will help in bringing issues of elderly people’s quality of life to awareness. This research will deepen the knowledge and skills of professionals on ageing issues, especially in rural areas/communities. / D

Aims: Coronary Revascularization (CR) has increased patients' survival rate globally. However, the lack of a consensus definition of Health Related Quality of Life (HRQoL) and the different methodological and conceptual approaches adopted by researchers in the cardio-revascularization field create an incomplete picture of the influence of CR on individuals' HRQoL. By using mixed methodology, the current research aimed to explore Greek CHD patients' perspectives of their HRQoL after CR (Coronary Artery Bypass Grafting (CABG) or Percutaneous Coronary Interventions (PCI)), as well as detect and explain individual disparities. Method: Two studies were conducted with a total sample of 487 individuals: (1) The translation and validation of the Coronary Revascularization Outcome Questionnaire (CROQ) into Greek and (2) The longitudinal mixed methods study, the main study of the thesis, following a sequential explanatory design with two research components: a) the longitudinal quantitative component aimed to detect changes in patients' HRQoL (both overall and its subdomains) following CR over a 12-month period based on individuals' subjective evaluation as captured by the CROQ, detect the influence of CR type on the outcome and to explore potential predictors (individuals' demographic, clinical and behavioural features). Data were analysed using multilevel modelling; b) the qualitative component aimed to capture individuals' lived experience, their view and understanding of themselves and their life approximately 12 months after treatment using Interpretive Phenomenological Analysis (IPA). Results/findings: Based on participants' subjective evaluations as captured by the validated Greek version of the CROQ, one year after CR Greek Coronary Heart Disease (CHD) patients experience an increase in their HRQoL level compared to prior to CR. The pattern of change though is not constant; initially HRQoL increases with time, and then decreases again, however, remaining much greater compared to prior to CR one year after CR. Regarding the influence of the CR type of treatment on patients' HRQoL level, a year after CR mixed findings are revealed. In the symptoms and physical functioning subdomain, patients treated with CABG demonstrate a greater increase compared to patients treated with PCI. In the psychosocial functioning subdomain no difference is found. In the cognitive functioning subdomain, patients treated with CABG demonstrate a decline compared to their cognitive functioning prior to the CR. Various demographic, clinical and behavioural features are demonstrated to be predictors of the outcome though not consistent for all subdomains. The main predictors associated with larger positive changes following CR seem to be sex, BMI and smoking; females with low BMI that do not smoke tend to demonstrate a greater increase in HRQoL after CR. According to individuals' lived experience, participants, reflecting on their experience one year after treatment, perceive CR as a simple process and their negative experience is mostly related to medical care. Many participants with no symptoms or adverse effects tend to misperceive CHD, viewing their health condition as an acute disease treated with CR. Trying to understand disease causality they tend to adopt medical discourse especially in relation to stress as a factor that can be controlled by themselves and reflect on their own responsibility as a causal factor. Feeling grateful for being alive, sensing a different body, a 'revitalized body' as many participants suggest, as well as a fear of re-occurrence or disease progression motivate individuals to work on aspects of the self related to the CHD development in an effort to regain control over their life which has been reduced after the CHD diagnosis. In effect a dramatic change in how the self and life are viewed is reported, highlighting a positive growth; a greater appreciation of life, a personal growth and effort to build more meaningful relationships. Challenges that participants face in modification of their lifestyle are attributed to both external and internal factors. Concerning smoking participants' accounts point to a lack of knowledge regarding the relationship between smoking and CHD, a lack of support (by experts or family members) and conscious denial as a way to cope with every day anxiety and stress, but also a pleasure in everyday life. The findings provide a complementary insight into perceptions of individuals with CHD about their quality of life one year after CR, suggesting that other factors beyond CR may influence their perspectives. Conclusions/implications: This study highlights the benefits of using a mixed methods longitudinal design in exploring HRQoL. Both the quantitative and qualitative findings support the notion that HRQoL is a multidimensional, continuously changing concept, providing support for the Wold Health Organization's definition. Also, the findings suggest that CR has a positive influence on individuals' HRQoL. The effect of the CR type needs further investigation as mixed findings are observed in the present thesis. Moreover, it seems difficult to investigate the pure effect of CR on individuals' HRQoL without taking into consideration individuals' adjustment processes and positive growth triggered by the CR. The self regulation model (SRM) might be considered a useful theoretical framework for developing theory-based interventions aiming to alter patients' false beliefs since individuals' making-meaning process seems to be aligned with it. Finally, the complementary insights concerning smoking may help health care providers to develop smoking cessation interventions tailored to cardiac patients.

Background Recently, Taiwan has been faced with the migration of numbers of women from Southeast Asian (SEA) countries. It was estimated that the aggregate number of SEA wives in Taiwan was more than 131,000 in 2007 (Ministry of Foreign Affairs, 2006).These women are often colloquially called, “foreign brides” or “alien brides”; most of them are seen as commodities of the marriage trade, whose marriages are arranged by marriage brokers. Some women can be regarded as being sold for profit by their families. These young Vietnamese immigrant women come to Taiwan alone, often with a single suitcase, and are culturally and geographically distinct from Taiwanese peoples; the changes in culture, interpersonal relationships, personal roles, language, value systems and attitudes exert many negative impacts on their health, so greater levels of acculturation stress can be expected. This particular group of immigrant women are highly susceptible and vulnerable to health problems, due to language barriers, cultural conflicts, social and interpersonal isolation, and lack of support systems. The aims of this study were to examine the relationships between acculturation and immigrantspecific distress and health outcomes among Vietnamese transnational married women in Taiwan. This study focuses on Vietnamese intermarriage immigrants, the largest immigrant group in the period from1994 through to 2007. Methodology The quantitative study was divided into two phases: the first was a pilot study and the second the main study. This study was conducted in a communitybased health centre in the south of Taiwan, targeting Taiwanese households with Vietnamese wives, including the Tanam, Kaohsiung, and Pentong areas. This involved convenience sampling with participants drawn from registration records at the Public Health Centre of Kaohsiung and used the snowball technique to recruit 213 participants. The instruments included the following measures: (1) Socio-demographic information (2) Acculturation Scale (3) Acculturative Distress Scale, and (4) HRQOL. Questions related to immigrant women’s acculturation level and health status were modified. Quantitative data was coded and entered into the SPSS and SAS program for statistical analysis. The data analysis process involved descriptive, bivariate, multivariate multiple regression, and classification and regression trees (CART). Results Six hypotheses of this study were validated. Demographic data was presented and it revealed that there are statically significant differences between levels of acculturation and years of residency in Taiwan, number of children, marital status, education, religion of spouse, employment status of spouse and Chinese ethnic background by Pearson correlation and Kendall’s Tau-b or Spearman test. The correlations of daily activity, language usage, social interaction, ethnic identity, and total of acculturation score with DI tend to be negatively significant. In addition, the result of the one-way ANOVA supported the hypothesis that the different types of acculturation had a differential effect on immigrant distress. The marginalized group showed a greater immigrant distresses in comparison with the integrated group. Furthermore, the comparison t-test revealed that the Vietnamese immigrant women showed a lower score than Taiwanese women in HRQOL. The result showed higher acculturative stress associated with lower score of HRQOL on bodily pain, vitality, social functioning, mental health, and mental component summary. The CART procedure to the conclusion that the predictive variables for the physical component of the SF-36 (PCS) were: alienation, occupation, loss, language, and discrimination (predicted 28.8% of the total variance explained). The predictive variables for the mental component of the SF-36 (MCS) were: alienation, occupation, loss, language, and novelty (predicted 28.4% of the total variance explained). Conclusion As these Vietnamese immigrant women become part of Taiwanese communities and society, the need becomes apparent to understand how they acculturate to Taiwan and to the health status they acquire. The findings have implications for nursing practice, research, and will assist the Taiwanese government to formulate appropriate immigrant health policies for these SEA immigrant women. Finally, the application of this research will positively contribute to the health and well being of thousands of immigrant women and their families.

This work deals with effectiveness of coeliac disease management. It is a model case of chronic disease management. The analytical framework of this work is the multilevel Innovative Care for Chronic Conditions Framework. Crucial is the interaction between health care team that represents health care system, community partners and patients with their families. In the case of coeliac disease it is necessary to include also the role of representatives of market with gluten free products. The interaction of these participants takes place in wider political context, whose state influences this interaction fundamentaly and reflects so in final results - state of patients and quality of their live. Using the evaluation of the quality of life tool SF-36, it has been ascertained, that the quality of life of coealiac patients is lower in comparison with European standard of healthy population and that the causes of the problem have to be searched and systematically removed at all levels of the system of chronic health care. The findings validate the theoretic presumption, that the chronic health care is still considerably underestimated and that it does not reply to the needs of chronic ill patients, which reflects just on general quality of life.

Individuals born with primary immune deficiency diseases (PIDD) have a dysfunctional immune system, and many are treated by lifelong injections of immunoglobulin therapy. Studies have shown that these patients have low health-related quality of life (HRQOL) and well-being (WB) and that these outcomes might be improved by the availability of therapy innovated according to preferences for fewer needle sticks or a shorter infusion time. Regulators at the U.S. Food and Drug Administration (FDA) have approved therapies innovated per these preferences. However, there is limited data demonstrating how these innovations impact HRQOL and WB. Using the biopsychosocial model, the purpose of this cross sectional quantitative study was to evaluate whether patients with PIDD using therapies innovated for fewer needle sticks or a shorter infusion time had a higher mean HRQOL and WB compared to those who were not. The study included 153 patients who completed the Patient Reported Outcomes Measurement Information System (PROMIS)-29 survey. The dependent variables were HRQOL and WB measured by PROMIS-29, and the independent variables were the medical product innovations. Independent samples t tests results showed mean PROMIS-29 scores were not statistically different (p > .05). This suggests patients were optimized according to their treatment preference. A subgroup of patients who had taken the PROMIS-29 survey more than once concurrent with switching to a therapy aligned with patient preferences showed improved HRQOL and WB. These findings have implications for positive social change in that seeking the patient's voice to inform medical product innovation and FDA regulatory decision-making has potential to improve biopsychosocial outcomes.

In Anbetracht steigender Inzidenzraten für Tumorerkrankungen, bei gleichzeitig steigenden Überlebensraten, gewinnt die Frage nach der verbleibenden gesundheitsbezogenen Lebensqualität (HRQOL) im klinischen Alltag immer größere Bedeutung. Für einige HRQOL- Domänen bzw. Symptom-Items konnte bereits gezeigt werden, dass diese mit der Überlebenszeit von Patienten korrelieren bzw. Prädiktoren für längeres Überleben sind. Ziel der vorliegenden Studie war es die gesundheitsbezogenen Lebensqualität (HRQOL) bei einer großen Kohorte (N=1879) deutscher Tumorpatienten zu untersuchen. Mit Hilfe des Fragebogens EORTC QLQ-C30 (Version 3.0) wurde die physische Funktion, Rollenfunktion, emotionale Funktion, kognitive Funktion, soziale Funktion, Fatigue und die globale Lebensqualität gemessen. Aus der Krankenakte der betreffenden Patienten wurden relevante soziodemographische Merkmale (Alter, Geschlecht, Nationalität, Body-Mass-Index) und klinische Merkmale (Diagnose, TNM- Stadium, Therapieform, Intervall seit Diagnose, Rehabilitationsmaßnahme) extrahiert und statistisch ausgewertet. Wir stellten fest, dass die Tumorpatienten in allen HRQOL-Domänen starke Beeinträchtigungen im Vergleich zur gesunden deutschen Allgemeinbevölkerung zeigen. In besonderem Maße zeigten sich jüngere Tumorpatienten (≤59Jahre) beeinträchtigt. Weiterhin sahen wir klinisch relevante Beeinträchtigungen bei Patienten mit einer Therapiekombination aus Radio- und Chemotherapie, Patientinnen mit Brustkrebs und Tumoren des weiblichen Genitaltrakts und Patienten mit Migrationshintergrund aus Südosteuropa. Im gesamten Patientenkollektiv stellten wir eine überdurchschnittlich hohe Ausprägung von Fatigue (CRF) fest. Aufgrund der gemessenen Beeinträchtigungen der HRQOL, sowie der hohen Ausprägung von CRF sollten den betroffenen Patienten möglichst frühzeitig zusätzliche spezifische Therapie-Angebote unterbreitet werden, wie z.B. eine onkologische Rehabilitation und psycho-onkologische Therapiemaßnahmen, denn diese Intervention zeigte eine klinisch relevante Verbesserung in allen HRQOL-Domänen. Die routinemäßige Erfassung der subjektiven Lebensqualität der Betroffenen stellt in unseren Augen eine wichtige Zielgröße dar, welcher in der Routineversorgung neben objektiven Befunden (wie Tumoransprechen usw.) viel mehr Beachtung geschenkt werden sollte.