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<p><strong>Background</strong>: Health-related quality of life (HRQL) studies have inconsistently identified a burden of pain in survivors of brain tumours in childhood, with limited exploration of this morbidity.</p> <p><strong>Objective: </strong>To explore the HRQL, with a focus on pain, in survivors greater than 10 years from diagnosis of a primary brain tumour in childhood or adolescence.</p> <p><strong>Methods:</strong> A cross-sectional study was undertaken using Health Utilities Index (HUI) questionnaires. Location of pain was queried using a homunculus and a colour-analog scale facilitated the reporting of severity. Single-attribute HRQL scores for participants with and without pain were compared. Stability of pain over a decade was established using available HUI2/3 data from the same cohort with imputation for missing variables.</p> <p><strong>Results:</strong> Twelve males and 13 females out of 37 eligible subjects participated in this study. Participants (mean time from diagnosis of 19.7 years) had mean multi-attribute HRQL scores of 0.79 (SD of 0.23) for HUI2 and 0.69 (SD of 0.29) for HUI3. Thirteen (52%) participants reported pain, with ranges in severity and location of the discomfort. Participants with pain had considerably greater burdens of morbidity in sensation and emotion than those without pain. Pain also increased from the initial interview (10 years prior) to the final interview.</p> <p><strong>Conclusion:</strong> As a group, long-term survivors of brain tumours in childhood have diminished overall HRQL. However there is variability between subjects. Pain appeared to be a persistent and significant burden in a subset of individuals, with those experiencing pain reporting greater severity of morbidities in other attributes.</p> / Master of Science (MSc)

Background: Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disease characterized by the loss of motor neurons. Preference-based measures (PBMs) of health-related quality of life (HRQL) can be utilized for cost-effectiveness analyses of interventions in individuals with ALS. However, current measures are generic (GPBMs) and the psychometric properties of these measures have not yet been evaluated in ALS. Purpose: The purpose of this thesis was to evaluate the psychometric properties of GPBMs in ALS by 1) conducting a systematic review of the psychometric properties of GPBMs, and 2) assessing the content and convergent validity of GPBMs in ALS. Methods: Two studies were conducted. First, a systematic review was performed, and four databases were searched to identify studies that used and reported on the psychometric properties of GPBMs in ALS. Second, participants were recruited from three clinical sites across Canada and outcome measures were administered through an online or hardcopy survey. Areas of importance to the HRQL of individuals with ALS were identified using the Patient Generated Index (PGI), mapped against GPBMs to determine their coverage and scores were compared to determine convergent validity. Results: For the first study, the EQ-5D-3L was found to be the most commonly used GPBMs in ALS. It demonstrated convergent and known-groups validity however, significant floor effects were observed. For the second study, results indicated that the majority of GPBMs identified approximately half of the areas impacted by ALS. In addition, there were several domains not identified by GPBMs. Conclusion: This thesis highlights the importance of complete psychometric evaluation of measures in ALS. There is the need for the development of an ALS specific preference-based measures that reflects the health concerns of individuals with ALS; as GPBMs used in ALS were evaluated and deemed to be lacking in support for their usage in ALS. / Thesis / Master of Science Rehabilitation Science (MSc) / Amyotrophic Lateral Sclerosis (ALS) is a fatal disease that causes individuals to lose their strength and eventually the ability to speak, eat, move and breathe. Questionnaires can be used to understand the health-related quality of life (HRQL) of individuals with ALS however these measures do not always reflect the experiences of these individuals. The goal of this dissertation was to identify whether measures truly capture areas important to individuals with ALS. In our studies, we found that there is little proof in the accuracy of measures used. In addition, the measures do not fully capture the areas of life important to individuals with ALS. This is important to help researchers and health care professionals understand the effects of ALS on HRQL. These results will help them determine which treatments are worthwhile and the best to use in practice and provide recommendations for future research.

Yes / Young people choose energy-dense, nutrient-poor diets, yet understanding of potential determinants is limited. Associations between food choices, mental wellbeing, health-related quality of life (HRQoL) and family affluence were explored to identify targets for intervention to promote dietary health and wellbeing in young people. Adolescents were recruited via post-primary schools in the UK and surveyed at two time-points when aged 13-14 years and 15-16 years. The questionnaire enquired about mental wellbeing using the Short Warwick-Edinburgh Mental Wellbeing Scale, HRQoL using the KIDSCREEN-10, socio-economic status using the Family Affluence Scale and food choice by Food Frequency Questionnaire (FFQ). With missing and anomalous cases excluded, the sample comprised 1208 cases. Factor analysis on the FFQ indicated five food choice factors: ‘Junk Food’; ‘Meat’; ‘Healthy Protein’; ‘Fruit/Vegetables’; ‘Bread/Dairy’. Multivariate regression analysis indicated that frequent consumption of Junk Food was associated with being male and lower mental wellbeing. Frequent Meat intake was associated with being male and with lower HRQoL. Frequent choice of Bread/Dairy foods was more common among males and associated with higher wellbeing and greater affluence. Those who consumed Fruit/Vegetables frequently were more likely to be female, have higher HRQoL, higher mental wellbeing, and greater family affluence. These direct associations endured between time points. The dietary factors were not mutually exclusive. Those who frequently chose Junk Food were less likely to choose Fruit/Vegetables. Frequent choice of Meat was associated with more frequent choice of Junk Food and Healthy Protein. Intervention to improve dietary and psychological health in young people should target males, those in less affluent households, seek to reduce consumption of ‘junk’ food, and increase fruit and vegetable intake. / This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. This ma-terial is based upon work conducted as part of the Wellbeing in Schools (WiSe) study which was financially supported by the Centre of Excel-lence for Public Health (Northern Ireland), and the Centre of Evidence and Social Innovation, at Queens University Belfast.