We investigated the association of coping with quality of life (QoL) among parents of children with chronic illnesses, particularly inherited metabolic diseases (IMD); and whether coping may modify the association between caregiving complexity and parental QoL. In project 1, we systematically reviewed studies of parents of children with chronic illness. Among 10 eligible studies, we identified some evidence that adaptive coping strategies were positively associated with parental psychological QoL. In project 2, we analyzed data from a crosssectional mailed Canadian survey of parents of children <12 years of age with IMD. Among 113 respondents, greater emotion-focused coping was associated with lower mental QoL (all parents) and higher depressive symptoms (parents of children >=5 years). Analysis of significant interactions between coping and caregiving complexity did not reveal clear trends. Understanding the association of parental coping with QoL may help to inform interventions to promote parental health as part of family-centred care.

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.

Thesis (Ph. D.)--University of Hong Kong, 2006. / Title proper from title frame. Also available in printed format.

Thesis (M. Ed.)--University of Hong Kong, 2006. / Title proper from title frame. Also available in printed format.

Thesis (Ph. D.)--University of Hong Kong, 2007. / Title proper from title frame. Also available in printed format.