Purpose: A majority of childhood and adolescent cancer survivors face life-long cancer- and treatment-related sequelae. Long-term follow-up is necessary to facilitate timely diagnosis and management of these health conditions. As part of strategic long-term follow-up, provider continuity of care (PCOC) may improve outcomes through appropriate use of surveillance, screening, and coordination of services. The purpose of this thesis was to assess physician services utilization and PCOC among survivors of childhood cancer compared with general population subjects, and to examine factors associated with survivors' use of physician services and PCOC scores. Methods: Physician services utilization and PCOC were assessed in a population-based cohort of 1322 five-year cancer survivors diagnosed between 1981 and 1995 under age 20 in British Columbia, and a group of 13,220 age- and gender-frequency matched, randomly selected population-based subjects, whose records were linked to individual-level administrative healthcare datasets. Effects of clinical and sociodemographic modifiers on utilization and PCOC were examined using generalized linear modeling. Changes in utilization and PCOC by age were estimated using a longitudinal, repeated measures modeling approach. Results: Survivors incurred an average of 8.94 medical visits per year: 4.82 to primary care physicians, 2.69 to specialists, and 1.43 to non-physician providers. Survivors had more visits than comparators in all visit categories (p<0.0001 for all). As they age, survivors' use of primary care services increases significantly, while their use of specialist services declines, trends that are not mirrored by the comparison population. The average PCOC score for survivors was 0.54 ± 0.22, indicating survivors saw the same primary care provider for only 50% of their primary care visits. Mean score did not differ between survivors and comparators; however, in the population sample scores improved with age (p=0.02), while among survivors, scores worsened (p=0.05). Conclusions: The dramatic age-related increase in primary care visits observed in the survivor group suggests that primary care physicians play a key role in ensuring quality long-term follow-up care. Survivors are at heightened risk for poor PCOC as they age and transition into adult-oriented community care, raising concerns about whether they are receiving the appropriate follow-up care encompassing screening, surveillance and psychosocial support.

Purpose: A majority of childhood and adolescent cancer survivors face life-long cancer- and treatment-related sequelae. Long-term follow-up is necessary to facilitate timely diagnosis and management of these health conditions. As part of strategic long-term follow-up, provider continuity of care (PCOC) may improve outcomes through appropriate use of surveillance, screening, and coordination of services. The purpose of this thesis was to assess physician services utilization and PCOC among survivors of childhood cancer compared with general population subjects, and to examine factors associated with survivors' use of physician services and PCOC scores. Methods: Physician services utilization and PCOC were assessed in a population-based cohort of 1322 five-year cancer survivors diagnosed between 1981 and 1995 under age 20 in British Columbia, and a group of 13,220 age- and gender-frequency matched, randomly selected population-based subjects, whose records were linked to individual-level administrative healthcare datasets. Effects of clinical and sociodemographic modifiers on utilization and PCOC were examined using generalized linear modeling. Changes in utilization and PCOC by age were estimated using a longitudinal, repeated measures modeling approach. Results: Survivors incurred an average of 8.94 medical visits per year: 4.82 to primary care physicians, 2.69 to specialists, and 1.43 to non-physician providers. Survivors had more visits than comparators in all visit categories (p<0.0001 for all). As they age, survivors' use of primary care services increases significantly, while their use of specialist services declines, trends that are not mirrored by the comparison population. The average PCOC score for survivors was 0.54 ± 0.22, indicating survivors saw the same primary care provider for only 50% of their primary care visits. Mean score did not differ between survivors and comparators; however, in the population sample scores improved with age (p=0.02), while among survivors, scores worsened (p=0.05). Conclusions: The dramatic age-related increase in primary care visits observed in the survivor group suggests that primary care physicians play a key role in ensuring quality long-term follow-up care. Survivors are at heightened risk for poor PCOC as they age and transition into adult-oriented community care, raising concerns about whether they are receiving the appropriate follow-up care encompassing screening, surveillance and psychosocial support.

Purpose: A majority of childhood and adolescent cancer survivors face life-long cancer- and treatment-related sequelae. Long-term follow-up is necessary to facilitate timely diagnosis and management of these health conditions. As part of strategic long-term follow-up, provider continuity of care (PCOC) may improve outcomes through appropriate use of surveillance, screening, and coordination of services. The purpose of this thesis was to assess physician services utilization and PCOC among survivors of childhood cancer compared with general population subjects, and to examine factors associated with survivors' use of physician services and PCOC scores. Methods: Physician services utilization and PCOC were assessed in a population-based cohort of 1322 five-year cancer survivors diagnosed between 1981 and 1995 under age 20 in British Columbia, and a group of 13,220 age- and gender-frequency matched, randomly selected population-based subjects, whose records were linked to individual-level administrative healthcare datasets. Effects of clinical and sociodemographic modifiers on utilization and PCOC were examined using generalized linear modeling. Changes in utilization and PCOC by age were estimated using a longitudinal, repeated measures modeling approach. Results: Survivors incurred an average of 8.94 medical visits per year: 4.82 to primary care physicians, 2.69 to specialists, and 1.43 to non-physician providers. Survivors had more visits than comparators in all visit categories (p<0.0001 for all). As they age, survivors' use of primary care services increases significantly, while their use of specialist services declines, trends that are not mirrored by the comparison population. The average PCOC score for survivors was 0.54 ± 0.22, indicating survivors saw the same primary care provider for only 50% of their primary care visits. Mean score did not differ between survivors and comparators; however, in the population sample scores improved with age (p=0.02), while among survivors, scores worsened (p=0.05). Conclusions: The dramatic age-related increase in primary care visits observed in the survivor group suggests that primary care physicians play a key role in ensuring quality long-term follow-up care. Survivors are at heightened risk for poor PCOC as they age and transition into adult-oriented community care, raising concerns about whether they are receiving the appropriate follow-up care encompassing screening, surveillance and psychosocial support. / Medicine, Faculty of / Population and Public Health (SPPH), School of / Graduate

Adolescence is the period of physical and emotional development from childhood to adulthood. As an adolescent develops they struggle with many issues including developing independence from their parents, embracing peer culture, an increase in the importance of body image and the development of sexual, vocational, and moral identity. The diagnosis and treatment for cancer can interfere with the adolescent meeting these goals, and subsequently cause the experience of adolescence to be more difficult. The aim of this study was to identify how adolescents with cancer cope with their situation. The objectives were to determine the resources adolescents utilise to cope with their experience, and the coping strategies adolescents use to cope with their experience. A thorough literature review identified that there had previously been only limited research with adolescents with cancer. In particular there had been very few qualitative studies investigating the specific coping strategies used by adolescents with cancer, with no such research being undertaken in Queensland. This study was conducted under the epistemological stance of constructionism. Meaning was constructed for this study of adolescents with cancer through the use of grounded theory methods, and secondary analysis of data. Interviews were collected by the researcher for a project at the Royal Children’s Hospital. Using grounded theory methods, seven of the interviews were analysed. In the process of developing a central category, Schatzman's Dimensional Matrix was used to assign codes into context, processes, consequences, and conditions, under the central category of “conquering the cancer experience”. The experience of diagnosis and treatment for cancer was difficult for these adolescents, however they ultimately coped and became stronger as a result of their experience. The key findings of this study identified that adolescents were able to cope with their experience. These finding were discussed in relation to factors which enhanced their coping, factors which influenced their ability to cope and how the experience changed the adolescent. Recommendations were also made with the aim of improving the experience of adolescents undergoing treatment for cancer in Queensland. Through the implementation of the recommendations of this study, hopefully the journey of adolescents with cancer can be made easier.

Objective: The impact of childhood cancer on future quality of life (QoL) in survivors is unclear. Current studies focus on comparing outcomes to healthy peers and identifying related treatment and demographic variables, but a shift in our approach is necessary. This study is guided by the Wilson and Cleary Model (WMC) and seeks to identify longitudinal predictors of QoL in adolescent survivors of cancer that explain variance in QoL beyond the impact of treatment and demographic variables. Methods: The Childhood Cancer Survivor Study (CCSS) is a multi-institutional longitudinal study following a cohort of childhood cancer survivors. This study focuses on the CCSS cohort (N = 305) who completed the baseline survey in 1994 and the Teen survey in 2001. The baseline survey assessed parent-report of child’s psychological and physical symptoms, functional status, and health perceptions. The Teen survey utilized the Child Health and Illness Profile – Adolescent Edition (CHIP-AE), a self-report measure assessing QoL in six domains: achievement, resilience, satisfaction, discomfort, disorders, and risk. The primary hypothesis was that psychological and physical symptoms, functional status impairment, and health perceptions as rated by parents at baseline would predict variance in quality of life as rated by adolescents at follow-up after adjusting for demographic and treatment-related variables. Six separate hierarchical regressions were analyzed for each of the QoL domains. Results: The main hypothesis was supported. For each QoL outcome, a significant amount of variance was predicted: achievement, F (6, 259) = 8.90, p < .001, adjusted R2 = .152, resilience, F (12, 209) = 3.47, p < .001, adjusted R2 = .118, satisfaction, F (6, 265) = 8.73, p < .001, adjusted R2 = .146, discomfort, F (7, 273) = 6.75, p < .001, adjusted R2 = .126, disorders, F (9, 212) = 6.47, p < .0001, adjusted R2 = .182, and risk, F (7, 238) = 4.81, p < .001, adjusted R2 = .098. Furthermore, for all outcomes, psychological and physical symptoms, functional status impairment, and health perceptions predicted variance above and beyond the impact of demographic and treatment variables. These factors accounted for an additional 9.5% of the variance in the achievement domain, 6.2% for resilience, 10.8% for satisfaction, 6.5% for discomfort, 12.4% for disorders, and 6.1% for risk. Conclusions: Results suggest that psychological and physical symptoms, functional status and health perceptions should be assessed and targeted in interventions for childhood cancer survivors to promote future positive QoL. Future studies need to continue identifying factors related to positive long-term functioning in diverse samples of childhood cancer survivors.