It is well established that mucosal dryness is the most common symptom in primary Sjögren's Syndrome (pSS) patients, affecting the nasal, oral and genital mucosa. A systematic review was conducted and a study with the following aims was established: 1) To assess the functions of the smell, taste and sexuality in patients with pSS. 2) To determine whether the mucosal dryness has an impact on the functions of the smell, taste and sexuality in pSS patients. 3) To investigate the impact of the impairment of the functions of smell, taste and sexuality on the quality of life (QoL) and mental health well-being in women with pSS. Methodology: Sixty-five pSS patients and 62 sex-matched healthy volunteers were recruited for this study. The smell function was assessed by the University of Pennsylvania Smell Identification Test (UPSIT). The taste function was comprehensively evaluated by assessing the gustatory function using the Taste Strips Test (TST), and the neurosensory threshold by an electrogustometer (EGM). The sexual function was assessed by the Female Sexual Function Index (FSFI). The oral dryness was assessed by means of stimulated and unstimulated salivary flow rate (SFR), clinical assessment of oral dryness scale (CODS) and Xerostomia Inventory (XI). The World Health Organisation Quality of Life-BRÉF (WHOQoL- BRÉF) and Oral Health Impact Profile-14 (OHIP-14) were used for the general and oral health related QoL respectively. The Hospital Anxiety and Depression Scale (HADS) was used to assess the mental health status. Results: Data analysis showed that the smell dysfunction was twice as prevalent in the patients group (41.5%, n=27/65) compared with healthy volunteers (24.1%, n=15/62). This difference was even more pronounced when assessing the gustatory function impairment, which was six times more prevalent in pSS patients (54%, n=34/63) than in healthy participants (8.3%, n=5/60). The neurosensory threshold of taste was three times higher in the patients' group (31.7%, n=20/64) compared with the healthy volunteers (9.8%, n=6/61), and was associated with gustatory deterioration in pSS group (β=-0.4, 95% CI=-0.2 - 0), indicating possible neurological impairment in this group. As expected, the salivary flow rate and the clinical oral dryness score were significantly lower in the patient group compared with healthy volunteers. No evidence was found to support that the oral dryness was associated with deterioration of smell, taste or sexual functions in pSS patients. The number of sexually active pSS patients (n=28) was half of that in the healthy volunteers group (n=42), and the FSFI showed that the sexual function was significantly impaired in pSS patients (p= < 0.05). The self-administered questionnaires showed that the life quality was significantly compromised in patients, who were more anxious (58.5%, n=38/65) and four times more depressed (32.3%, n=21/65) compared with healthy volunteers (Anxiety=21%, n=13/61; depression=8.2%, n=5/61). However, neither smell nor taste dysfunction were contributory factors to the reduced QoL, but the sexual dysfunction was the main factor contributed to the compromised general QoL in pSS patients. Conclusion: The smell, taste and sexual impairment are manifestations seen in pSS, but only the sexual dysfunction appear to have a diminishing effect on the QoL and mental health well-being of patients. The taste deterioration in pSS does not seem to be associated with mucosal dryness but maybe precipitated by a Sjögren's syndrome-associated neuropathy.

Quality of life (QoL) questionnaires have been suggested as the most appropriate way to measure the effectiveness of low vision rehabilitation. However, several research studies have not been able to detect differences in effectiveness between rehabilitation strategies. The hypothesis of this study is that there are other factors, unrelated to vision, influencing the scores obtained in these questionnaires and masking the changes achieved by rehabilitation. The suggestion is that patients' realistic acceptance of, and successful adaptation to, their visual loss is influenced by psychosocial factors such as; personality, religious beliefs, social support, general health (i.e. mental and physical), understanding of their eye condition, level of education, and financial status. Concurrently, a parallel study was conducted with children. As with the adult arm, the aim of the study was to understand whether quality of life, and social behaviour and relationships in children with a visual impairment were related to the vision loss, vision rehabilitation, or non-visual factors. Patients attending the Manchester Royal Eye Hospital low vision clinic between May 2009 and August 2010, were recruited: 448 patients between 18 and 96 years old, with best-corrected binocular visual acuity smaller or equal to6/18, and 62 children between 5 and 16 years old. Telephone delivery of previously validated questionnaires was used with adult patients and parents of child patients; face-to-face interviews were completed by children. Both studies showed how psychosocial factors were stronger determinants of quality of life in people with low vision, than traditional low vision rehabilitation using optical aids. In the case of adults, physical and mental health appeared to be major predictors of quality of life, adaptation to the vision loss and participation restriction. In the case of children, visual acuity at distance and near, contrast sensitivity (CS), age, and parents' coping strategies appeared to determine quality of life and children behaviours. The final element of this work was a pilot study to attempt to address issues causing poor quality of life. Seventy-one participants who scored low in the Low Vision Quality of Life Questionnaire (LVQOL-25) (i.e. below 62.5) were given the opportunity to enrol for the Expert Patient Programme, which is a self-management programme aimed at adults with chronic health problems or disabilities. Only 2 participants expressed an interest in the programme, and none of them actually took part.

文希甄. / "2011年6月". / "2011 nian 6 yue". / Thesis (M.Div.)--Chinese University of Hong Kong, 2011. / Includes bibliographical references (leaves 55-58). / Abstract in Chinese and English. / Wen Xizhen. / 前言 --- p.3 / 摘要 --- p.4 / Abstract --- p.5 / Chapter 第一章 --- 引言：探討「美好人生」的方法視野 --- p.6 / Chapter I. --- 從閒暇說起 --- p.6 / Chapter II. --- 工具理性思維 --- p.8 / Chapter III. --- 重提意義價値 --- p.11 / Chapter IV. --- 透過宗教靈性去建構意義價値 --- p.14 / Chapter 第二章 --- 閒暇，邁向「美好人生」的基礎 --- p.19 / Chapter I. --- 社會需要閒暇 --- p.19 / Chapter II. --- 閒暇是文化的基礎 --- p.20 / Chapter i. --- 閒暇是探索意義價値的傳統 --- p.21 / Chapter ii. --- 現代理性難以作爲文化的基礎 --- p.24 / Chapter iii. --- 以道家無爲來理解閒暇現象 --- p.25 / Chapter III. --- 閒暇是生活的重心 --- p.27 / Chapter i. --- 閒暇作爲人類的理想生活 --- p.27 / Chapter ii. --- 拒絶將工具理性、經濟效益價値體系神聖 --- p.29 / Chapter iii. --- 閒暇不是茶餘飯後的生活附加品 --- p.33 / Chapter IV --- 閒暇植根於崇拜慶典 --- p.34 / Chapter V --- 小結：閒暇對我們社會文化的提醒 --- p.36 / Chapter 第三章 --- 安息，展現.「美好人生」的另類實踐 --- p.38 / Chapter I --- 對世界的創造及參與 --- p.40 / Chapter II. --- 對世界的救贖及改造 --- p.41 / Chapter III. --- 記念生命的痕跡 --- p.43 / Chapter IV --- 在社群中的慶賀及歡樂 --- p.44 / Chapter V --- 懷有盼望、繼續向前 --- p.46 / Chapter VI. --- 安息所展現靈性 --- p.47 / Chapter VII. --- 小結：安息對閒暇的意義 --- p.48 / Chapter 第四章： --- 總結 --- p.51 / 參考書目及資料： --- p.55

Objetivo: Avaliar o impacto na qualidade de vida dos distÃrbios obstrutivos do sono (DOS) do sono em crianÃas atendidas pelo Sistema Ãnico de SaÃde (SUS), assim como a repercussÃo do tratamento com adenoidectomia ou adenotonsilectomia na qualidade de vida destas crianÃas. MÃtodos: Foi realizado um estudo de intervenÃÃo nÃo controlado do tipo antes e apÃs (before and after) com um componente avaliativo (avaliaÃÃo da qualidade de vida). Uma amostra consecutiva de crianÃas com indicaÃÃo de adenoidectomia ou adenotonsilectomia foi recrutada no ambulatÃrio de otorrinolaringologia do Hospital UniversitÃrio Walter CantÃdio da Faculdade de Medicina da Universidade Federal do CearÃ, e aplicados aos cuidadores um questionÃrio validado, especÃfico para a avaliaÃÃo da qualidade de vida de crianÃas com DOS, o OSA-18, antes da cirurgia e com pelo menos 30 dias apÃs a sua realizaÃÃo. AlÃm disso, foi realizado exame nasofibroscÃpico, otorrinolaringolÃgico, visando responder a questionÃrio semi-estruturado sobre o perfil clÃnico e social da crianÃa, em ambas as consultas. Resultados: A populaÃÃo do estudo foi de 48 crianÃas e a idade mÃdia de 5,93 anos (DP=2,43). A mÃdia de tempo de escolaridade do cuidador foi de 8,29 anos (DP=3,14). Os sintomas mais presentes foram de sono agitado, apnÃia e ronco. A mÃdia de tempo de queixa de DOS foi de 4,62 anos (DP=2,49), sendo a mÃdia de escore total do OSA-18 basal de 82,83 (grande impacto na qualidade de vida) e no pÃs-operatÃrio, de 34,15. As diferenÃas nos escores total e dos domÃnios entre o OSA-18 basal e pÃs operatÃrio foram todas significantes (p<0,00). ConclusÃes: A crianÃas com DOS apresentam impacto relevante na qualidade de vida e apresentam melhora considerÃvel apÃs o tratamento cirÃrgico. / Objective: To evaluate the impact of sleep-disordered breathing (SDB) in the quality of life of children under treatment by the âSistema Ãnico de SaÃde â SUSâ, and the outcomes of the treatment with adenoidectomy or adenotonsillectomy in these childrenâs quality of life. Methods: A non-controlled intervening study was made, of the kind âbefore and afterâ, with an assessment component (evaluation of the quality of life). A consecutive sample of children with indication of adenoidectomy or adenotonsillectomy was recruited from the Walter CantÃdio University Hospital otolaryngology clinic of the Federal University of Cearà Medical College, and the guardians answered a validated survey, specific for the evaluation of quality of life in children with SDB, the OSA-18, before the surgery and with, at least, 30 days after surgery, besides, a nasofibroscopic exam and an otolaryngology exam were done as well as the answering to a semi-structured survey about the childâs social and clinic profile, on both appointments. Results: The population under study was of 48 children with mean of 5,93 years of age (SD=2,43). The guardiansâ mean of years of study was 8,29 years (SD=3,14). The most frequent symptoms were agitated sleep, apnea and snoring. The SDB complaining time average was 4,62 years (SD=2,49). The total score mean of the initial OSA-18 was 82,83 (great impact in quality of life) and after surgery was 34,15. The differences in the total scores and in the domains between the initial OSA-18 and post-surgery were all significant (p<0,00). Conclusions: Children with SDB present a relevant impact in their quality of life, and they show a dramatic improvement after surgical treatment.

Research in the field of neuroendocrine tumors (NETs) has increased over the last decade, including studies focused on biochemical markers (biomarkers) of the disease. There is also growing interest in how NETs impact patients' quality of life (QOL). Consequently, there is a paucity of information about whether the expression of the specific disease biomarkers affects QOL as well as whether the primary tumor site impacts QOL. Using the explanatory model of health promotion and quality of life in chronic disabling conditions as the theoretical framework and data collected with the Norfolk QOL-NET instrument, this study's purpose was to fill that gap in knowledge through research questions addressing the relationship between the primary tumor site and NET patients' total QOL score as well as the effect of specific NET biomarkers on NET patients' total QOL score. Data were analyzed using descriptive statistics, one-way analysis of variance (ANOVA), regression analysis, and post hoc tests to determine significance. Results from an ANOVA showed that abnormal NET biomarkers affected total QOL (p = 0.011). In the analyses of whether the independent biomarker variables affected the dependent total QOL variable, only the result for Serotonin Normal was significant (p = 0.002). The presence of abnormal biomarker measurements also affected two of the Norfolk QOL-NET domains significantly, gastrointestinal and physical functioning (p = 0.005 and p = 0.030, respectively). By understanding the relationship between NETs and patient QOL, the potential positive social change implications are helping NET patients assess the severity of their condition, determining what affects their well-being, and using this information to help monitor their treatment/progress.

Objectives: The purpose of this study was to explore the level to which dental caries and socio-demographic factors impact the oral health-related quality of life (OHRQoL) in a sample of Amish children. Methods: This cross-sectional study was embedded within a pilot study of medical management of caries in the primary dentition using silver nitrate. Parents were asked to complete a baseline questionnaire which included questions regarding socio-demographics and an OHRQoL questionnaire- a 16-item Parent Perception Questionnaire (PPQ). Parents were also asked to make a global rating of their child’s oral health status and its impact on the child’s overall wellbeing. Oral examinations were completed by two previously trained and calibrated dentists for the assessment of dental caries experience. Descriptive and bivariate analyses were performed including the Spearman Correlation and Wilcoxon rank sum test. Multivariable linear modeling was used to model the covariate effects on OHRQoL. Results: 77 children were analyzed. OHRQoL was negatively impacted by caries as per the Oral Domain of the PPQ (p < .02) and the global oral health status rating (p < 0.0001). There was no significant difference between males and females in the OHRQoL outcome measures (p > 0.05). The effect of income on OHRQoL was tenuous as the results were inconsistent. Conclusions: According to parents’ perceptions, a higher caries experience was associated with a poorer oral health status rating and had a negative impact on oral symptoms as they related to the OHRQoL of the children. Finally, there may be cultural differences regarding the value and/or expectations of oral health.

Im Rahmen von Krebserkrankungen müssen zahlreiche medizinische Entscheidungen getroffen werden. Das Bedürfnis der Patienten, an solchen Entscheidungen zu partizipieren, ist individuell unterschiedlich und für Ärzte häufig schwer einschätzbar. Ziel dieser Arbeit ist eine bessere Vorhersage der Partizipationsbedürfnisse von Krebspatienten und die Untersuchung von Effekten des Partizipationsbedürfnisses auf die Lebensqualität. / In an oncological context many medical decisions have to be made. Patient participation preferences concerning these decisions individually differ. For physicians it is often hard to predict them. The aim of this work is a better prediction of oncological patients' participation preferences. Effects of a congruence of preferred and experienced participation on quality of life are investigated.

Aims: The aim of this thesis was to identify the most cost effective urogynaecological treatment from a range of five standard therapies of 217 female patients, and to test the hypothesis that the conservative treatment of urinary incontinence was more cost effective than surgical or pharmacological interventions, using the cost per Quality Adjusted Life Year (QALY) as a common assessment. Methods: The first step in this process was to determine whether a generic cost effectiveness instrument, the York Quality of Life Questionnaire was sufficiently sensitive to allow its use in the field of urogynaecology. The York Questionnaire was compared with several other quality of life questionnaires and outcome measures that have been previously utilised in urinary incontinence, and was found to be equally sensitive in detecting change in quality of life as a result of treatment. The next step was to measure the costs required to produce this change in quality of life and to calculate the QALY's for five urogynaecological treatments in three prospective trials comprising of: a randomised trial of Nurse Continence Advisor versus Urogynaecologist conservative treatment of urinary incontinence (n=143), a prospective trial of laparoscopic versus open colposuspension (n=62), and the pharmacological treatment of detrusor instability (n=12). Costs assessed included consultation fees, investigations, theatre costs, hospital stay, patient time off work & travel expenses, and reduction in protective pad costs. Results: The cost/QALY for 5 years as a result of each of the five treatments varied from $28,009 for the Nurse Continence Advisor conservative treatment to $134,069 for the open colposuspension treatment. Conclusions: This finding suggests that the conservative treatment of urinary incontinence is the most cost effective, and should be utilised as the first form of treatment. As a consequence, financial resources would be more efficiently utilised in the conservative treatment of urinary incontinence, such as increasing the availability of services offered by Nurse Continence Advisors and physiotherapists.

The popularity of non-mainstream cancer treatments raises complex issues for patients and medical practitioners and it is vital to scientifically evaluate effectiveness and investigate mechanisms of action of complementary treatments. This thesis describes sociodemographic, medical and psychological characteristics of participants in The Gawler Foundation program, which incorporates meditation, social support, positive thinking and a vegetarian diet. It describes program impact in terms of: Profile of Mood States (POMS), Mini-Mental Adjustment to Cancer (Mini-MAC), Functional Assessment of Chronic Illness Therapy (FACIT) and salivary cortisol levels. Compliance with program recommendations for up to 12-months and effects on adjustment were explored. This thesis also describes the development of a scale to assess the effects of meditation. Program participants (n=112) were predominantly female, well-educated, younger in age with good social support. Over 60% reported metastatic disease and 50% had been diagnosed for over a year. Improvements in all measures were found at program completion, with Spiritual wellbeing particularly linked to improvement in quality of life (QOL). Those with higher levels of mood disturbance and lower QOL at baseline benefited more than those who were less well adjusted. Analysis of three, six, and 12-month follow-up data showed high compliance with program recommendations. Improvements seen at program completion were mostly not maintained at follow-up, although improvements from baseline were. These results suggest that the program has significant beneficial effects on adjustment but that these may not be fully maintained at follow-up, possibly due to difficulty incorporating program recommendations into everyday life and increasing disease severity. Study limitations include self-selection, high drop-out rates and lack of a control group. Initial investigation suggested that quality of meditation experience was linked to improved adjustment and this thesis describes the initial development of a scale to assess the effects of meditation, which was divided into two sections: Experiences During Meditation and Effects of Meditation in Everyday Life, and trialled on 236 participants. Scale evaluation involved factor analysis, reliability and validity analysis. The Experiences During Meditation scale had five subscales: Cognitive effects, Emotional effects, Mystical experiences, Relaxation and Physical discomfort. The Effects of Meditation in Everyday Life scale had a single factor structure, with the final scale consisting of 30 items. Construct validity was explored by assessing correlations with the measures: Perceived Control of Internal States, Mindful Attention Awareness Scale, FACIT Spiritual wellbeing subscale, POMS-Short Form and Physical Symptoms Checklist. It is anticipated that the scale may be useful for clinicians and researchers and may contribute to improved understanding of the effects of meditation practices.

Thesis (M.D.) -- University of Texas Southwestern Medical Center at Dallas, 2007. / Vita. Bibliography: pp. 40-41.