京都大学 / 0048 / 新制・課程博士 / 博士(社会健康医学) / 甲第22383号 / 社医博第105号 / 新制||社||医11(附属図書館) / 京都大学大学院医学研究科社会健康医学系専攻 / (主査)教授 古川 壽亮, 教授 川上 浩司, 教授 滝田 順子 / 学位規則第4条第1項該当 / Doctor of Public Health / Kyoto University / DFAM

<p><strong>Abstract</strong></p> <p><strong>Purpose: </strong>While most children diagnosed with cancer survive their initial disease, the intensive treatments they receive place them at risk for late effects. Long-term follow-up (LTFU) care is recommended for cancer survivors for surveillance and early detection of late effects. Knowledge, or lack thereof, regarding diagnosis, treatment and late effects is an important barrier and/or facilitator for attending LTFU care in adolescent and young adult (AYA) cancer survivors. The purpose of our study was to examine the extent of knowledge in Canadian AYA survivors of childhood and adolescent cancer, and identify factors associated with such knowledge.</p> <p><strong>Methods: </strong>Survivors of childhood and adolescent cancer, between the ages of 15 and 26 years, were recruited from three pediatric oncology centres. Patients were invited to participate in the study through mail and clinic recruitment. A questionnaire booklet, including the Cancer Knowledge Survey that asked questions about cancer, treatment and late effects, was administered to collect necessary information. Clinical data was extracted from hospital records to validate participants’ answers.</p> <p><strong>Results: </strong>250 (response rate= 75.5 percent) out of 331 patients invited to participate completed the questionnaire booklet. 18 (7.2 percent) participants lacked information regarding their type of cancer, whereas 25 (10.3 percent) participants were ‘not knowledgeable’ of their treatment. Lack of knowledge regarding treatment was associated with being non-white [odds ratio= 0.3 (0.2-0.6)] compared with white. Also, 83 (33.5 percent) participants were unaware of their late effects. Lack of knowledge regarding late effects was associated with younger age [odds ratio= 1.2 (1.1-1.3)], and having leukemia compared with embryonal tumour [odds ratio= 3.41 (1.10-10.6)].</p> <p><strong>Conclusion:</strong> Results from this study highlights important knowledge deficits, especially in terms of understanding risk of late effects from cancer treatments. Findings from this study can be used to design programs and interventions aimed at increasing cancer knowledge in AYA cancer survivors.</p> / Master of Science (MSc)

No description available.

Survivors of adolescent and young adult (AYA) cancer endure a range of symptoms and side effects, including weight gain, unfavourable changes in body composition, physical disfigurements, and tissue damage, which can impair their physical and psychological health. Identifying and optimizing interventions that can mitigate negative side effects are necessary. Whereas physical activity has been identified as one such intervention for child and older adult cancer survivors, the evidence for survivors of AYA cancer is far less convincing to put forward recommendations and argue for integrating physical activity into practice. Research seeking to understand if/how and under what circumstances physical activity is related to physical and psychological outcomes is of particular importance to guide care aimed at relieving cancer-related damage and distress. This research program sought to address this through three interrelated studies, which progressed sequentially. Study One examined the clarity, appropriateness, and relevancy of eight widely used questionnaires assessing self-reported physical activity and psychological outcomes. Cognitive interviews were conducted with seven survivors of AYA cancer who were representative of individuals likely to participate in future research. Findings from this study indicated most of the questionnaires tested could be used to assess self-reported physical activity and psychological outcomes among survivors of AYA cancer with or without slight modifications. After incorporating participants’ feedback into the questionnaires, Study Two was conducted to: (1) examine the cross-sectional relationships between physical self-perceptions and self-esteem (physical and global), and (2) explore if physical activity and/or self-efficacy for physical activity moderated these relationships. Correlation analyses were conducted, and as hypothesized, physical self-perceptions and physical and global self-esteem were positively related. Hierarchical multivariate linear regression analyses showed that self-efficacy for physical activity moderated the relationship between physical self-perceptions and physical self-esteem (but not global self-esteem), such that at higher levels of self-efficacy for physical activity, the magnitude of the association between physical self-perceptions and physical self-esteem was greater. Physical activity did not moderate the relationship between physical self-perceptions and physical or global self-esteem. These findings provide empirical evidence that physical self-perceptions and self-esteem (physical and global) are related and suggest self-efficacy for physical activity may serve to strengthen the relationship between physical self-perceptions and physical self-esteem among survivors of AYA cancer. However, more work exploring if/how and under what circumstances physical activity is implicated in this relationship is needed via experimental study designs. In Study Three, a two-arm, mixed-methods randomized controlled trial (RCT) designed to test a 12-week physical activity intervention among survivors of AYA cancer was piloted. The objectives of this study were to assess the feasibility and acceptability of trial methods and the intervention. Findings suggest modifications to the methods and intervention are required. Making the trial multi-site, using multiple recruitment strategies, refining assessments of directly-measured physical activity behaviour and aerobic capacity, and incorporating behavioural support into the intervention may improve feasibility and acceptability. This study highlights the value of pilot trials and provides useful data that can be used to optimize trial methods and physical activity interventions for this population. Collectively, the studies comprising this thesis lay the foundation for further testing of if/how and under what circumstances physical activity and physical and psychological outcomes are related in survivors of AYA cancer. Findings offer researchers and practitioners information to aid in the development of theoretically- and empirically-based interventions seeking to mitigate the adverse effects of cancer and its treatments in this population.

No description available.

Adolescents and young adults (AYAs, 15-39 years of age) with cancer face unique challenges. Efforts have been made to improve both care and outcomes for this population. Metrics to evaluate AYA cancer care efforts help to ensure that objectives and outcomes are being met. This thesis comprises 7 papers which explore system performance metrics for cancer care and control in AYAs. A scoping review introduces the topic and addresses the current state of indicator metrics for the AYA cancer population. The second paper extends this work and develops a consensus-based list of relevant indicators. The subsequent papers focus on further development of two of the identified indicators for implementation in Canada (identification of patient reported outcome measures (PROMS) for assessing distress; a referral indicator for oncofertility care). This thesis describes 14 indicators in 5 care areas. Two identified indicators were further developed to aid in implementation (“Proportion of AYA patients screened for distress with standardized AYA specific tools” and “Proportion of AYA patients who had fertility preservation discussion before treatment”). Criteria from the National Quality Forum (NQF) were used to assess commonly used PROMs for distress. It was found that although all PROMs had acceptable psychometric properties, only the “Impact of Cancer” scale of the CDS-AYA had strong content validity for AYA with cancer. For Oncofertility, the indicator “Proportion of cases attending a fertility consult visit ≤ 30 days from diagnosis of cancer” was recommended for use. Finally, factors associated with attending such a fertility consult were identified. Important factors for both men and women included: age at diagnosis, risk to fertility, year of diagnosis, treatment with radiation or chemotherapy, region of care, income and residential instability. The information presented in this thesis can be applied to national system performance initiatives to identify and implement metrics to monitor and evaluate cancer care in AYA. / Thesis / Doctor of Philosophy (PhD) / A person 15 to 39 years old with cancer will face many challenges. This is a time of life with many changes such as continuing schooling, getting married, starting a career, or starting a family. To make sure that young people with cancer are getting the best care, and that they have the best chance to achieve their goals and contribute to society, we need to measure what is important to this group. These measures can be used to compare hospitals, or changes over time to help make care better. This paper looks at what we already measure in this group, and what patients, researchers and healthcare workers think also should be measured to help provide the best care for these patients. Measures discussed in this paper could be used in programs to monitor the quality of care given to young people with cancer.

No description available.

A tese tem como objetivo qualificar cientificamente a Bateria de Aptidão Física para Crianças e Jovens com Deficiência Visual (BAF‐DV), baseada na bateria do Projeto Esporte Brasil (PROESP/BR). Para atingi‐lo, subdividiu-­‐se a pesquisa em três estudos, cada um com metodologias e resultados específicos. O primeiro estudo, de adaptação dos testes do PROESP/BR, se embasou na experiência empírica e profissional da autora, na sua observação participante na aplicação dos testes adaptados, em uma entrevista semiestruturada com a amostra (21 jovens com baixa visão ou cegos de 7 a 25 anos) e um questionário para três professores de Educação Física. Os resultados da adaptação foram satisfatórios, com aprovação tanto da amostra quanto dos professores avaliadores. O segundo estudo, de validação dos testes adaptados no primeiro estudo, se tratou de uma avaliação por cinco pareceristas doutores na área de Atividade Motora Adaptada e/ou Avaliação Física a respeito da adaptação dos testes da bateria através de um questionário. Os resultados da validação pelos pareceristas doutores foram satisfatórios. O terceiro e último estudo, de verificação de fidedignidade dos testes validados no segundo estudo, foi realizado através da verificação da correlação dos testes e do re‐teste de cada teste da bateria adaptada com uma amostra de 72 jovens com baixa visão ou cegos de 7 a 25 anos. Os resultados indicam que todos os testes da BAF‐DV são fidedignos e podem ser aplicados para os jovens das faixas etárias indicadas que sejam cegos ou tenham baixa visão, tanto sendo homens ou mulheres. / The thesis has the goal of scientifically qualifying the Bateria de Aptidão Física para Crianças e Jovens com Deficiência Visual (BAF‐DV), based on the test battery of Projeto Esporte Brasil (PROESP/BR). To achieve it, the research was divided in four studies, each with its own method and specific results. The first study, adapting the tests of PROESP/BR, was based on the author’s empirical and professional experience and participant observation in the battery application, on a semi-­‐structured interview with the sample (21 youngsters, either blind or with low vision, between 7 and 25 years‐old) and on a survey for three Physical Education teachers. The results for the adaptation were satisfactory, with the approval by the sample and by the teachers. The second study, validating the battery, was an evaluation of the tests by five PhD judges from the Adapted Physical Activities and/or from the Physical Evaluation fields through a survey. The results of the validation by the PhD judges were satisfactory. The third and last study, assessing the reliability of the battery, was developed by verifying the correlations of testing and retesting each test of the battery in a sample of 72 youngsters, either blind or with low vision, between 7 and 25 years-­‐old. The results show that every test of the BAF‐DV is reliable and may be applied to youngsters of the suggested age groups that are either blind or have low vision, either male or female.

A tese tem como objetivo qualificar cientificamente a Bateria de Aptidão Física para Crianças e Jovens com Deficiência Visual (BAF‐DV), baseada na bateria do Projeto Esporte Brasil (PROESP/BR). Para atingi‐lo, subdividiu-­‐se a pesquisa em três estudos, cada um com metodologias e resultados específicos. O primeiro estudo, de adaptação dos testes do PROESP/BR, se embasou na experiência empírica e profissional da autora, na sua observação participante na aplicação dos testes adaptados, em uma entrevista semiestruturada com a amostra (21 jovens com baixa visão ou cegos de 7 a 25 anos) e um questionário para três professores de Educação Física. Os resultados da adaptação foram satisfatórios, com aprovação tanto da amostra quanto dos professores avaliadores. O segundo estudo, de validação dos testes adaptados no primeiro estudo, se tratou de uma avaliação por cinco pareceristas doutores na área de Atividade Motora Adaptada e/ou Avaliação Física a respeito da adaptação dos testes da bateria através de um questionário. Os resultados da validação pelos pareceristas doutores foram satisfatórios. O terceiro e último estudo, de verificação de fidedignidade dos testes validados no segundo estudo, foi realizado através da verificação da correlação dos testes e do re‐teste de cada teste da bateria adaptada com uma amostra de 72 jovens com baixa visão ou cegos de 7 a 25 anos. Os resultados indicam que todos os testes da BAF‐DV são fidedignos e podem ser aplicados para os jovens das faixas etárias indicadas que sejam cegos ou tenham baixa visão, tanto sendo homens ou mulheres. / The thesis has the goal of scientifically qualifying the Bateria de Aptidão Física para Crianças e Jovens com Deficiência Visual (BAF‐DV), based on the test battery of Projeto Esporte Brasil (PROESP/BR). To achieve it, the research was divided in four studies, each with its own method and specific results. The first study, adapting the tests of PROESP/BR, was based on the author’s empirical and professional experience and participant observation in the battery application, on a semi-­‐structured interview with the sample (21 youngsters, either blind or with low vision, between 7 and 25 years‐old) and on a survey for three Physical Education teachers. The results for the adaptation were satisfactory, with the approval by the sample and by the teachers. The second study, validating the battery, was an evaluation of the tests by five PhD judges from the Adapted Physical Activities and/or from the Physical Evaluation fields through a survey. The results of the validation by the PhD judges were satisfactory. The third and last study, assessing the reliability of the battery, was developed by verifying the correlations of testing and retesting each test of the battery in a sample of 72 youngsters, either blind or with low vision, between 7 and 25 years-­‐old. The results show that every test of the BAF‐DV is reliable and may be applied to youngsters of the suggested age groups that are either blind or have low vision, either male or female.

A tese tem como objetivo qualificar cientificamente a Bateria de Aptidão Física para Crianças e Jovens com Deficiência Visual (BAF‐DV), baseada na bateria do Projeto Esporte Brasil (PROESP/BR). Para atingi‐lo, subdividiu-­‐se a pesquisa em três estudos, cada um com metodologias e resultados específicos. O primeiro estudo, de adaptação dos testes do PROESP/BR, se embasou na experiência empírica e profissional da autora, na sua observação participante na aplicação dos testes adaptados, em uma entrevista semiestruturada com a amostra (21 jovens com baixa visão ou cegos de 7 a 25 anos) e um questionário para três professores de Educação Física. Os resultados da adaptação foram satisfatórios, com aprovação tanto da amostra quanto dos professores avaliadores. O segundo estudo, de validação dos testes adaptados no primeiro estudo, se tratou de uma avaliação por cinco pareceristas doutores na área de Atividade Motora Adaptada e/ou Avaliação Física a respeito da adaptação dos testes da bateria através de um questionário. Os resultados da validação pelos pareceristas doutores foram satisfatórios. O terceiro e último estudo, de verificação de fidedignidade dos testes validados no segundo estudo, foi realizado através da verificação da correlação dos testes e do re‐teste de cada teste da bateria adaptada com uma amostra de 72 jovens com baixa visão ou cegos de 7 a 25 anos. Os resultados indicam que todos os testes da BAF‐DV são fidedignos e podem ser aplicados para os jovens das faixas etárias indicadas que sejam cegos ou tenham baixa visão, tanto sendo homens ou mulheres. / The thesis has the goal of scientifically qualifying the Bateria de Aptidão Física para Crianças e Jovens com Deficiência Visual (BAF‐DV), based on the test battery of Projeto Esporte Brasil (PROESP/BR). To achieve it, the research was divided in four studies, each with its own method and specific results. The first study, adapting the tests of PROESP/BR, was based on the author’s empirical and professional experience and participant observation in the battery application, on a semi-­‐structured interview with the sample (21 youngsters, either blind or with low vision, between 7 and 25 years‐old) and on a survey for three Physical Education teachers. The results for the adaptation were satisfactory, with the approval by the sample and by the teachers. The second study, validating the battery, was an evaluation of the tests by five PhD judges from the Adapted Physical Activities and/or from the Physical Evaluation fields through a survey. The results of the validation by the PhD judges were satisfactory. The third and last study, assessing the reliability of the battery, was developed by verifying the correlations of testing and retesting each test of the battery in a sample of 72 youngsters, either blind or with low vision, between 7 and 25 years-­‐old. The results show that every test of the BAF‐DV is reliable and may be applied to youngsters of the suggested age groups that are either blind or have low vision, either male or female.