<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.

Yes / Background: Understanding how health-related quality of life (HRQoL) is related to lifestyle factors during adolescence is crucial to effective health promotion. The aim of this analysis was to identify associations between HRQoL and lifestyle and to determine the degree to which they are mediated by food choices in adolescents. Methods: The Wellbeing in Schools (NI) survey (N = 1609; 13–14 years) assessed HRQoL using the Kidscreen52. Food choice was assessed by Food Frequency Questionnaire (FFQ) and physical activity was assessed using the Physical Activity Questionnaire for Adolescents (PAQ-A). Social media and alcohol abstinence were self-reported. Results: Path analysis indicated that fruit and vegetable intake was associated with higher HRQoL on dimensions of moods and emotions, parent relations and home life, financial resources, and social support and peers. Bread and diary intake was related to higher physical wellbeing. Protein was associated with higher psychological wellbeing, moods and emotions, self-perception, parent relations and home life, financial resources, and lower social support and peers. Junk food was related to lower moods and emotions. Males had higher psychological wellbeing, moods and emotions, parental relations and home life. Females had higher self-perception, autonomy, and social support and peers. Greater physical activity explained higher HRQoL on all dimensions. Less social media was associated with higher psychological wellbeing, moods and emotions, self-perception, parent relations and home life, and school environment. Alcohol abstinence was associated with higher physical wellbeing, psychological wellbeing, moods and emotions, self-perception, parent relations and home life, and school environment dimensions. Conclusion: Intervention to promote HRQoL in adolescents should consider food choices whilst encouraging physical activity, discouraging social media and deterring alcohol, and targeting boys and girls separately. / This study was financially supported by the Centre of Excellence for Public Health (Northern Ireland), and the Centre of Evidence and Social Innovation, at Queens University Belfast.

Health-related quality of life (HRQL) measures taken before and after coronary artery bypass grafting (CABG) aid in determining meaningful patient-perceived outcomes associated with alternative clinical interventions. This study compared performance of the Medical Outcomes Study Short Form-36 (MOS SF-36) subscales for Physical Functioning (PF), Role Physical (RP), Mental Health (MH), and Role Emotional (RE) against two other questionnaires, i.e. the Veteran's Specific Activity Questionnaire (VSAQ: self-efficacy for vigorous physical activity) and the Beck Depression Inventory (BDI-II: mental-emotional functioning). Seventy-one patients (59-M; 12-F; age, Mean + SD = 63 ± 8.6 years) were administered these three questionnaires just before and 3 months following CABG surgery. Score distributions were evaluated for the pre- and post-surgery measurements, as were change scores after CABG. All measures except the MOS SF-36 subscales for RP and RE showed statistically significant change after CABG (p<0.01). Only the subscales of RP and RE demonstrated substantial ceiling (21.0% and 56.3%) and floor effects (49.3% and 16.9%). Evaluation of individual change scores after CABG indicated that 59% and 62% of the patients, respectively, had clinically meaningful increases in the two measures of physical capability, i.e. PF and VSAQ. In contrast, 60% and 72% of patients, respectively, showed no clinically meaningful changes in the two measures of emotional functioning, i.e. RE and BDI-II scores. Chi-square analyses revealed that use of scales with similar definitional constructs resulted in significantly different surgical outcomes for the following: PF vs VSAQ (p<0.001), RP vs VSAQ (p<0.02); and MH vs BDI-II (p<0.0001). These findings illustrate the limitations in performance of the MOS SF-36 for assessing changes of importance in HRQL after CABG. The VSAQ and BDI-II, two simple measures of physical and emotional functioning that are fundamentally similar to those contained in the MOS SF-36, appear to be sensitive markers for detecting changes in these important outcomes after CABG surgery. / Master of Science

Children diagnosed with Type 1 diabetes face lifetime issues that will affect their health-related quality of life (HRQoL). These challenges require varied coping skills to manage the disease and a commitment to find ways to increase HRQoL. It was proposed that children’s general coping styles would be mediators in both the relation of family environment and children’s health-related quality of life and the relation of parental perceived social support and children’s health-related quality of life in children aged 8-16 with Type 1 diabetes. Age was also proposed to be a moderator in the relation of children’s coping to their health-related quality of life. Children aged 8 to 16 and their primary caregivers (N = 56) were recruited to participate in the study at a university hospital tertiary care clinic. Children completed the Pediatric Quality of Life Inventory 3.0 Diabetes Module for children and adolescents (PedsQL 3.0) and the Children’s Coping Strategies Checklist-Revision 1. Primary caregivers completed the PedsQL 3.0 for parents, the Family Environment Scale and the Multidimensional Scale of Perceived Social Support. Regression analyses were used to identify a model that explained the contribution of each factor to predict HRQoL. It was hypothesized that children’s active, distraction, and support-seeking general coping strategies would be mediators in the relation of family environment and parental perceived social support to children’s health-related quality of life and that children’s general avoidant coping strategies would not mediate either the relation of family environment or parental perceived social support to children’s health-related quality of life. Although children’s active, distraction, and support-seeking coping strategies were not found to mediate the relation of family environment to children’s health-related quality of life or the relation of parental perceive social support to health-related quality of life, children’s avoidant coping strategies were found to be a mediator in the relation of family environment to children’s health-related quality of life and in the relation of parental perceived social support to health-related quality of life. It was also hypothesized that children’s age would moderate the relation of children’s active, distraction, and support-seeking coping strategies to children’s health-related quality of life. Age moderated the relation of avoidant coping to HRQoL. Avoidant coping was negatively associated with HRQoL for the older children but the association was not significant for younger children. To facilitate a better health-related quality of life for children with Type 1 diabetes, therapists and healthcare professionals should identify ways to help parents feel more supported as they care for and create a more cohesive and low conflict family environment, which contributes to their children’s health-related quality of life. Additionally, therapists should work with children and their parents to increase children’s use of active, distraction, and support-seeking coping strategies, which are related to more positive outcomes compared to children’s use of avoidant coping strategies, which are related to less positive outcomes. / Ph. D. / This research study explored social and emotional climate in families, perception of parents’ social support, and children’s coping as factors that contribute to the health-related quality of life (HRQoL) in children aged 8 to 16 with Type 1 diabetes. One of the main goals of treatment for children diagnosed with Type 1 diabetes is preventing nerve, heart, and blood vessel damage from occurring in adulthood. When children are diagnosed with Type 1 diabetes, they face a lifetime issues that will affect their HRQoL. These challenges require children to develop skills to help them process both the expected and unexpected emotions and thoughts that occur while managing the disease and a commitment to find ways to increase HRQoL over the span of their lives. It was hypothesized that children with better social and emotional family climates or environments and more parental perceived social support would be able to more effectively cope and that better coping would be associated with more health-related quality of life. Effective forms of coping included three different strategies: active (e. g., use of positive restructuring of thoughts), distraction (e. g., use of physical release of emotion), and support-seeking (e. g., seeking support for managing feelings). Avoidant coping was also examined and included use of actions such as wishful thinking. Of note, the children’s coping measure used identified use general coping strategies and was not diabetes specific. Children with connected, expressive, and low conflict family climates and with parents who perceived themselves being supported more were lower in avoidant coping, which was related to more HRQoL for the children. How coping was associated with HRQoL was also predicted to be different when looking at older versus younger children. As children aged, their use of avoidant coping strategies increased and more avoidant coping was related to less HRQoL for older children but not for younger children. To facilitate a better health-related quality of life for children with Type 1 diabetes, therapists and healthcare professionals should identify ways to help parents feel more supported as they care for and create a more cohesive and low conflict family environment, which can contribute to their children’s health-related quality of life. Additionally, therapists should work with children and their parents to decrease children’s use of avoidant coping strategies, which are related to less positive outcomes.

京都大学 / 新制・課程博士 / 博士(人間健康科学) / 甲第25502号 / 人健博第122号 / 新制||人健||8(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 木下 彩栄, 教授 千葉 理恵, 教授 湊谷 謙司 / 学位規則第4条第1項該当 / Doctor of Human Health Sciences / Kyoto University / DFAM

The present study reviewed existing literature on the effects of treatment and recovery costs on the multidimensional wellness of testicular cancer (TC) survivors. Peer-reviewed and scholarly articles were systematically searched and analyzed to determine the extent and impact of the overall financial effects of a TC diagnosis. This study aimed to uncover evidence indicating the possible decline in overall health-related quality of life (HRQoL) due to the potential deleterious effects on TC survivors’ financial well-being. We found that TC survivors’ HRQoL is affected due to the damages of high out-of-pocket treatment costs, possible loss of employment, disability, and any other related financial events for a patient or survivor of cancer, which refers to financial toxicity (FT). Further, FT does not affect all cancer patients in the same capacity. Considering the number of individuals affected by the adverse effects of FT, more research is needed to better comprehend FT’s impacts on TC survivors’ well-being. We conclude that every patient should be educated on the effects of FT resulting from their cancer experience. Furthermore, they should be informed that an early return to work may not be feasible. This will enable them to adequately prepare for the long-term effects and learn how to adjust their wages and lifestyle habits.

Résumé Problématique : La perte de dents est l’une des maladies chroniques associées à plusieurs altérations anatomiques et fonctionnelles de la cavité buccale et des voies respiratoires supérieures. Ces changements entraînent une détérioration de la qualité de vie liée à la santé bucco-dentaire (OHRQoL), en particulier chez les personnes âgées. Les prothèses complètes permettent d’améliorer l'apparence et peuvent restaurer certaines fonctions masticatoires altérées par l’édentement, créant ainsi un impact positif sur la qualité de vie liée à la santé buccodentaire. Cependant, le port continu des prothèses dentaires pendant la nuit, peut amener des problèmes de santé buccodentaires. Toutefois, certaines études ont montré que le fait de dormir avec une prothèse dentaire avait un impact positif sur la qualité du sommeil et la qualité de la vie. Objectifs : L’objet de ce projet de maîtrise est d’étudier l’impact du port nocturne des prothèses complètes sur l’OHRQoL, chez les patients âgés édentés et souffrant d’apnée obstructive du sommeil (AOS). Méthodologie : Ce projet de maîtrise est imbriqué dans un essai clinique croisé randomisé portant sur 70 patients âgés (65 ans et plus), complètement édentés et diagnostiqués avec une AOS modérée à sévère (IAH ≥ 10). Les participants ont été assignés au hasard à l'un des deux groupes (dormant avec ou sans les prothèses dentaires dans un ordre inverse), pendant deux périodes de 30 jours. Les données sur les effets du port nocturne des prothèses dentaires sur la qualité de vie liée à la santé et la qualité de vie liée à la santé buccodentaire ont été recueillies au début et au cours des deux visites de suivi, à l’aide du questionnaire Oral Health Impact Profil (OHIP-20) et du formulaire abrégé SF-36 respectivement. L'analyse des données a été réalisée à l'aide de modèles à effets mixtes pour les mesures répétées, considérant notamment le type d'intervention (dormir avec ou sans prothèses), la séquence d’intervention et la période. Résultats: Les résultats rapportés ci-dessous sont basés sur les données recueillies auprès de 63 patients. Le score global de l’OHIP-20 était légèrement plus élevé, mais non significatif (p=0.08), chez les patients qui dormaient avec leurs prothèses que chez ceux qui dormaient sans prothèses. Les scores de toutes les sous-échelles du questionnaire OHIP-20 ont augmenté chez les patients qui dormaient avec leurs prothèses, à l’exception de l’incapacité sociale, qui a légèrement diminué, et de handicap qui est resté inchangé. Cependant, l’impact négatif significatif n’a été signalé que pour deux scores de l’OHIP-20 : psycho-inconfort (p = 0,04) et incapacité physique (p = 0,05). Les scores OHIP-20 n’ont été influencés ni par la séquence de randomisation ni par le nombre de visites, à l’exception des scores de handicap, qui ont légèrement augmenté chez les sujets assignés à dormir avec leurs prothèses dentaires au cours de la première période de cette étude. En revanche, les résultats du SF-36 ont montré une amélioration des scores moyens de toutes les sous-échelles chez les personnes dormant avec leurs prothèses, mais les seuls impacts significatifs étaient constatés sur les aspects de la fonction sociale et du changement de l’état de santé (p <0,01 et p = 0,01 respectivement). La séquence d'attribution a eu un effet significatif sur la fonction physique (p = 0,03), la douleur (p = 0,02) et le changement de santé (p = 0,02). Le nombre de visites de suivi n'a eu un impact significatif que sur le domaine de la fonction physique (p = 0,03). Conclusion : Bien que dormir avec les prothèses dentaires puisse avoir un impact négatif sur les aspects psychiques et physiques d’OHRQoL, il pourrait également avoir un impact positif sur les aspects sociaux de la fonction et des changements de santé de la HRQoL. Les résultats de la recherche de ce travail de maitrise doivent être considérés comme préliminaires car l’analyse totale des données n’est pas encore terminée. / Problematic: Tooth loss is one of the chronic diseases associated with several anatomical and functional alterations in the oral cavity and the upper airway tract. These changes result in the deterioration in oral health-related quality of life (OHRQoL), particularly among the elderly. Complete dentures can enhance the appearance and restore some impaired masticatory functions, creating a positive impact on OHRQoL. However, continuous nocturnal wear of dentures may raise oral health problems. In contrast, some studies have found that the impact of sleeping with dentures is positive with regard to the quality of sleep and quality of life. Objectives: The aim of this Master’s study is to investigate the impact of sleeping with dentures on OHRQoL in edentulous elderly patients who suffer from obstructive sleep apnea (OSA). Methodology: This master research project is nested in a randomized, crossover trial study of 70 edentulous elderly patients diagnosed with moderate to severe OSA (AHI ≥10). The participants were randomly assigned to one of two groups (sleeping with or without the prosthesis in opposite order), for two periods with a 30-day interval between them. Data on the effect of nocturnal wearing of dentures on OHRQoL and health-related quality of life (HRQoL) were collected at the baseline and during the two follow-up visits, using the Oral Health Impact Profile (OHIP-20) and Short form (SF-36) questionnaires respectively. Data analysis was performed using mixed effect models appropriate for repeated measures including types of intervention (sleeping with or without dentures), sequence and visit number. Results: Results reported below are based on data collected from 63 patients. The overall OHIP-20 score was slightly higher among patients who wore their dentures while sleeping than in those who did not, but not at a significant level (p=0.08). The scores of all OHIP-20 subscales were increased among patients who slept with prosthesis, except for the social disability which slightly decreased, and the handicap remained at the same average. However, the significant negative impact was reported only for two OHIP scores: psycho-discomfort (p=0.04) and physical disability (p=0.05). OHIP-20 scores were influenced neither by the assignment sequence nor by the period, with an exception for handicap scores which slightly increased among elders assigned to sleep with dentures in the first period of this study. In contrast, SF-36 results showed an improvement in the mean scores in all subscales among the elderly when participants were sleeping with dentures, but the only significant impacts were found on social function and health change aspects (p <0.01, and p=0.01, respectively). The assignment sequence had a significant effect on physical function (p=0.03), pain (p=0.02), and health change (p=0.02). The follow-up visit number had a significant impact only on the physical function domain (p=0.03). Conclusion: While sleeping with dentures could have a negative impact on psycho-discomfort and physical discomfort aspects of OHRQoL, it could have a positive impact on the social function and health change aspects of HRQoL. The results of this Master’s research should be considered as preliminary since the total data analysis has not completed yet.

I Sverige drabbas årligen omkring 7000 kvinnor av bröstcancer vilket är den vanligaste cancerformen hos kvinnor. Bröstcancer påverkar den hälsorelaterade livskvaliteten (HRQoL) både på kort- och lång sikt. HRQoL beskriver den inverkan hälsa har på funktionsförmåga och upplevda välbefinnande inom fysiska-, psykiska- och sociala livsområden. Syftet var att undersöka hur kvinnor med bröstcancer värderar sin hälsorelaterade livskvalitet. Litteraturöversiktens design utgick från en deduktiv ansats. Litteraturöversikt gjordes bland artiklar i databaser med inriktning omvårdnad. Resultatet innefattar 18 vetenskapliga artiklar, nio kvalitativa- och nio kvantitativa studier. HRQoL påverkas negativt inom fysiskt-, psykiskt- och socialt välbefinnande hos kvinnor med bröstcancer. Kvinnorna skattar fysisk funktion som försämrad vilket påverkar fysisk HRQoL negativt. Psykisk HRQoL påverkas även negativt då de upplever isolering, depression, ångest, förlust av kontroll och rädsla under bröstcancerbehandling. Kvinnorna skattar betydligt sämre social HRQoL än övrig population då de behöver avstå från dagliga aktiviteter. För att kvinnorna ska kunna uppnå god HRQoL behöver sjuksköterskor ha kunskap om vilka faktorer som påverkar HRQoL vid bröstcancer. Att även tillämpa personcentrerad omvårdnad kan vara betydelsefullt för att uppnå tillfredsställande omvårdnad och HRQoL. Förståelse för kvinnornas HRQoL är av betydelse för vägledning och stöttning genom sjukdomsprocessen. / In Sweden around 7000 women are affected by breast cancer every year which is the most common cancer among women. Breast cancer influence women both in short- and long-term health-related quality of life (HRQoL). HRQoL describes the influence health has on functional ability and the experience of physical-, psychological- and social wellbeing. The aim was to examine how women with breast cancer value their health-related quality of life. This literature review was based on a deductive approach. A literature review was made with articles from databases with focus on nursing care. The result is based on 18 scientific articles, nine qualitative and nine quantitative studies. HRQoL is negatively affected among women with breast cancer and influences physical-, psychological- and social wellbeing. The women rate physical function as decreased which affects physical HRQoL negatively. They experience isolation, depression, anxiety, loss of control and fear during treatments. Women rate significantly lower social HRQoL than the rest of the population when they must abstain from daily activities. If the women are going to achieve satisfying HRQoL the nurses need to have knowledge about which factors that may influence HRQoL in breast cancer. Using person-centred nursing is also important in order to achieve satisfying care and HRQoL. Understanding of the women´s HRQoL is significant for guidance and support during the disease.