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

Diabetes is emerging as a major threat to health, with global economic and social implications. Recent research has shown that the morbidity and mortality associated with diabetes can be reduced by timely and effective treatment. However, unless people with diabetes have access to this treatment, the impact of diabetes will continue to rise. This thesis therefore explores the current standards of care which people with diabetes receive. It also looks at factors likely to impact on delivery of diabetes care. Studies were conducted at two levels. In the studies described in Chapters 2 and 3, general data applicable to all or nearly all patients with diabetes were collected. This approach substantially eliminates selection bias but precludes the ability to examine clinical outcomes. In the other studies, detailed in Chapters 4, 5 and 6, specific aspects of diabetes care pertaining to more select groups of diabetic subjects were examined. This approach allows clinical parameters to be examined in more detail but is more subject to selection bias. It is hoped that the combination of these two approaches provides a more balanced view of the topic under examination. In Australia, the Medicare Program, a single government controlled universal health insurance fund, provides access to medical services for all residents. Medicare occasions of service data therefore represent the most comprehensive source of information regarding health service utilisation in Australia. The data does not account for people receiving diabetes care through public hospital based services. However, a survey of public hospitals within NSW (n=198), described in Chapter 2, showed that the number of individuals in this category is relatively small and represents only 5.2% of the diabetic population. Using Medicare item codes, and with the permission and assistance of the Commonwealth Department of Health and Aged Care, data were extracted on attendance to medical practitioners and utilisation of diabetes related procedures for people living in New South Wales (NSW) for the individual years between 1993 to 1997. All data were stratified by the presence of diabetes, gender and age group. Individuals were deemed to have diabetes if an HbA1c, which can only be ordered for a person with known diabetes, had been performed over the 5-year period and the sample size adjusted for the incidence of diabetes. Once adjusted, the number of people with diabetes in NSW for the individual years 1993 to 1997 were 143,920, 156,234, 168,216, 177,280 and 185,780. Comparison with 1996 census data confirmed a 91.7% capture of the total NSW population (5,495,900/5,995,545 individuals). The data were retrieved for NSW as a whole and for individual postcodes. Postcodes were then classified by population density as either major urban, urban or rural. On average over the study period, persons with diabetes accounted for 3.1% of the population but they used 5.5% of general practitioner services. As seen in Chapter 2, a large proportion of people with diabetes were also under the care of specialists and consultant physicians, up to 51.2% and 41.8% respectively, a 3 to 4 fold increase when compared with their non-diabetic counterparts. In regard to geographical location, once adjusted for age and gender, the odds ratio of attending a specialist was only slightly higher for people with diabetes living in areas of high population density when compared to people with diabetes living in rural areas. This ratio reached as high as 1.85 in regard to attendance to consultant physicians (Chapter 3). The odds ratio for the non-diabetic population was similar indicating that the difference in access to consultant physicians was not disease specific. Analysis of results showed that despite the increase in service utilisation, large proportions of people with diabetes were not routinely monitored in regard to diabetes and its complications across the State. By 1997, HbA1c was still not performed in over 40% of people with diabetes each year and only 11.6% of the diabetic population had undergone microalbuminuria estimation. Interestingly, the differences in levels of monitoring between rural and urban areas were surprisingly small. Monitoring of diabetes and its complications did improve in all parts of the State over the study period. However, the greatest improvement was seen in rural areas, despite rural patients having fewer attendances to general practitioners and fewer patients attending specialist care. In the face of finite resources and the rising prevalence of diabetes, an increasing number of patients will need to rely on general practitioners to provide diabetes care regardless of where they live. A 'shared care' approach which encourages and supports general practitioners to manage patients with diabetes, while giving them access to specialist services for those patients that require them, is increasingly being advocated as a way of maximising efficacy while minimising costs. Yet if health care professionals leave undone what they think is done by others, shared care can become neglected care. Chapter 4 reports a detailed audit of 200 randomly selected shared care patients who were assessed on two or more occasions. This study showed that the majority of specialist treatment recommendations are implemented by general practitioners. Doctors formally registered with the Diabetes Shared Care Programme and those who write longer referral letters were more likely to implement recommendations than their counterparts. Moreover, the average HbA1c and the complication profile of these patients were similar to those found in various studies around the world. This suggests that diabetes can be well managed by a shared care approach that is adequately integrated. To overcome the problem that data is lacking on those patients that did not return for specialist review, a further 200 shared care patients who were lost to follow up from the shared care system were traced. Information regarding whether treatment recommendations had been implemented was sought from both the referring doctor and the patient. Overall, information on 182 of the 200 patients could be obtained. As discussed in Chapter 5, comparison of the returned and non returned patients' demographic and clinical profiles at time of their initial specialist review showed that general practitioners differentiated between the 'more complicated' patients, choosing to re-refer those with macrovascular disease, while maintaining the care of 'less complicated' patients. Re-referral for specialist review was also dependent on the patient remaining under the care of their original doctor. Encouragingly, general practitioners seemed to take a more active role in the non-returned group. They included more details regarding type and duration of diabetes in the referral letters of patients who were not re-referred for specialist review. They also implemented more treatment recommendations in the non-returned group, with the difference in implementation rate for metabolic recommendations reaching statistical significance. This study also showed that movement of patients between doctors raises concern regarding continuity of care. The multi-factorial nature of diabetes means that best practice is not easily accommodated within a single appointment. Thus continuity of care becomes an important issue. To assess the current status, 479 consecutive patients referred to the Royal Prince Alfred Hospital Diabetes Centre in a 6-month period were recruited and underwent a detailed clinical assessment. They were also questioned regarding the number of general practitioners they attended and the length of time they had been under the care of the referring doctor. The results outlined in Chapter 6 showed that the majority of people with diabetes (87.7%) attended only one general practitioner and had been under the care of that doctor medium to long term. Younger patients, who were relatively healthy apart from the presence of diabetes, were more likely to attend several general practitioners or have changed their general practitioner within the last year. This lack of continuity had little difference on acute outcomes such as glycaemic and blood pressure control. Appropriately, continuity of care increased with increasing age and the increasing prevalence of diabetes complications, mainly macrovascular disease. These studies indicate that further efforts are required to improve the overall standard of diabetes care within Australia. At present there is a heavy dependency on specialist services. As the population ages and the number of people with diabetes increases, much of this burden will fall on general practitioners, as is already evident in rural areas. When provided with appropriate support and infrastructure, general practitioners are able to maintain standards of care through referral of patients with more complex medical problems and by maintaining the degree of continuity appropriate to the patient's needs. However, the collection of relevant information to monitor future trends in diabetes services provision is important. As shown in this thesis, Medicare data represents an easy and cost effective method with which to do so.

Diabetes is emerging as a major threat to health, with global economic and social implications. Recent research has shown that the morbidity and mortality associated with diabetes can be reduced by timely and effective treatment. However, unless people with diabetes have access to this treatment, the impact of diabetes will continue to rise. This thesis therefore explores the current standards of care which people with diabetes receive. It also looks at factors likely to impact on delivery of diabetes care. Studies were conducted at two levels. In the studies described in Chapters 2 and 3, general data applicable to all or nearly all patients with diabetes were collected. This approach substantially eliminates selection bias but precludes the ability to examine clinical outcomes. In the other studies, detailed in Chapters 4, 5 and 6, specific aspects of diabetes care pertaining to more select groups of diabetic subjects were examined. This approach allows clinical parameters to be examined in more detail but is more subject to selection bias. It is hoped that the combination of these two approaches provides a more balanced view of the topic under examination. In Australia, the Medicare Program, a single government controlled universal health insurance fund, provides access to medical services for all residents. Medicare occasions of service data therefore represent the most comprehensive source of information regarding health service utilisation in Australia. The data does not account for people receiving diabetes care through public hospital based services. However, a survey of public hospitals within NSW (n=198), described in Chapter 2, showed that the number of individuals in this category is relatively small and represents only 5.2% of the diabetic population. Using Medicare item codes, and with the permission and assistance of the Commonwealth Department of Health and Aged Care, data were extracted on attendance to medical practitioners and utilisation of diabetes related procedures for people living in New South Wales (NSW) for the individual years between 1993 to 1997. All data were stratified by the presence of diabetes, gender and age group. Individuals were deemed to have diabetes if an HbA1c, which can only be ordered for a person with known diabetes, had been performed over the 5-year period and the sample size adjusted for the incidence of diabetes. Once adjusted, the number of people with diabetes in NSW for the individual years 1993 to 1997 were 143,920, 156,234, 168,216, 177,280 and 185,780. Comparison with 1996 census data confirmed a 91.7% capture of the total NSW population (5,495,900/5,995,545 individuals). The data were retrieved for NSW as a whole and for individual postcodes. Postcodes were then classified by population density as either major urban, urban or rural. On average over the study period, persons with diabetes accounted for 3.1% of the population but they used 5.5% of general practitioner services. As seen in Chapter 2, a large proportion of people with diabetes were also under the care of specialists and consultant physicians, up to 51.2% and 41.8% respectively, a 3 to 4 fold increase when compared with their non-diabetic counterparts. In regard to geographical location, once adjusted for age and gender, the odds ratio of attending a specialist was only slightly higher for people with diabetes living in areas of high population density when compared to people with diabetes living in rural areas. This ratio reached as high as 1.85 in regard to attendance to consultant physicians (Chapter 3). The odds ratio for the non-diabetic population was similar indicating that the difference in access to consultant physicians was not disease specific. Analysis of results showed that despite the increase in service utilisation, large proportions of people with diabetes were not routinely monitored in regard to diabetes and its complications across the State. By 1997, HbA1c was still not performed in over 40% of people with diabetes each year and only 11.6% of the diabetic population had undergone microalbuminuria estimation. Interestingly, the differences in levels of monitoring between rural and urban areas were surprisingly small. Monitoring of diabetes and its complications did improve in all parts of the State over the study period. However, the greatest improvement was seen in rural areas, despite rural patients having fewer attendances to general practitioners and fewer patients attending specialist care. In the face of finite resources and the rising prevalence of diabetes, an increasing number of patients will need to rely on general practitioners to provide diabetes care regardless of where they live. A 'shared care' approach which encourages and supports general practitioners to manage patients with diabetes, while giving them access to specialist services for those patients that require them, is increasingly being advocated as a way of maximising efficacy while minimising costs. Yet if health care professionals leave undone what they think is done by others, shared care can become neglected care. Chapter 4 reports a detailed audit of 200 randomly selected shared care patients who were assessed on two or more occasions. This study showed that the majority of specialist treatment recommendations are implemented by general practitioners. Doctors formally registered with the Diabetes Shared Care Programme and those who write longer referral letters were more likely to implement recommendations than their counterparts. Moreover, the average HbA1c and the complication profile of these patients were similar to those found in various studies around the world. This suggests that diabetes can be well managed by a shared care approach that is adequately integrated. To overcome the problem that data is lacking on those patients that did not return for specialist review, a further 200 shared care patients who were lost to follow up from the shared care system were traced. Information regarding whether treatment recommendations had been implemented was sought from both the referring doctor and the patient. Overall, information on 182 of the 200 patients could be obtained. As discussed in Chapter 5, comparison of the returned and non returned patients' demographic and clinical profiles at time of their initial specialist review showed that general practitioners differentiated between the 'more complicated' patients, choosing to re-refer those with macrovascular disease, while maintaining the care of 'less complicated' patients. Re-referral for specialist review was also dependent on the patient remaining under the care of their original doctor. Encouragingly, general practitioners seemed to take a more active role in the non-returned group. They included more details regarding type and duration of diabetes in the referral letters of patients who were not re-referred for specialist review. They also implemented more treatment recommendations in the non-returned group, with the difference in implementation rate for metabolic recommendations reaching statistical significance. This study also showed that movement of patients between doctors raises concern regarding continuity of care. The multi-factorial nature of diabetes means that best practice is not easily accommodated within a single appointment. Thus continuity of care becomes an important issue. To assess the current status, 479 consecutive patients referred to the Royal Prince Alfred Hospital Diabetes Centre in a 6-month period were recruited and underwent a detailed clinical assessment. They were also questioned regarding the number of general practitioners they attended and the length of time they had been under the care of the referring doctor. The results outlined in Chapter 6 showed that the majority of people with diabetes (87.7%) attended only one general practitioner and had been under the care of that doctor medium to long term. Younger patients, who were relatively healthy apart from the presence of diabetes, were more likely to attend several general practitioners or have changed their general practitioner within the last year. This lack of continuity had little difference on acute outcomes such as glycaemic and blood pressure control. Appropriately, continuity of care increased with increasing age and the increasing prevalence of diabetes complications, mainly macrovascular disease. These studies indicate that further efforts are required to improve the overall standard of diabetes care within Australia. At present there is a heavy dependency on specialist services. As the population ages and the number of people with diabetes increases, much of this burden will fall on general practitioners, as is already evident in rural areas. When provided with appropriate support and infrastructure, general practitioners are able to maintain standards of care through referral of patients with more complex medical problems and by maintaining the degree of continuity appropriate to the patient's needs. However, the collection of relevant information to monitor future trends in diabetes services provision is important. As shown in this thesis, Medicare data represents an easy and cost effective method with which to do so.

The need for transition of care for adult survivors of chronic conditions of childhood onset is an area that has received increasing attention in the healthcare literature; however, gaps in understanding and implementation persist. The complexity of transitioning from pediatric to adult care environments present numerous challenges for patients, their families, and health care providers. Ineffectual transitions can result in increased morbidity, a decline in quality of life, and unnecessary health care spending. The fundamental challenges in transitions of care for this population originates from a lack of institutional support to develop structured transition protocols. Healthcare institutions lack impetus to develop transition programs as their utility has not been sufficiently demonstrated because of inadequate research upon which to base clinical decisions. Therefore, patients transitioning from pediatric to adult care often confront difficulties ranging from fragmented care coordination to extended lapses continuous care, which can exacerbate the progression of their chronic conditions. The primary aim of this study is to examine the current literature regarding the ability of pediatric to adult transition programs for survivors of chronic disease to determine whether they are effective in delaying disease progression. The secondary aim is to examine whether evidence exists to demonstrate cost effectiveness of such interventions. Subsequently we explore potential barriers to adoption for healthcare institutions to adopt pediatric to adult transition care programs on a broad scale. This systematic review employs methodology to extract, analyze and synthesize data from relevant peer-reviewed articles, observational studies, and clinical trials. Preliminary findings indicate that improving transition protocols can indeed enhance patient outcomes, potentially reduce hospital readmissions, and may thereby be cost-effective for health care organizations. We posit that providing optimized transitions of care during this vulnerable life stage could enhance patient outcomes for managing various chronic conditions of childhood onset supporting the argument that better transitions of care are not only desirable but also achievable and worthwhile goals for health care systems to adopt. By examining the intricacies of transitioning care for adult survivors of chronic conditions of childhood onset, we aim to open a critical dialog and make recommendations for future research and clinical practice that may significantly impact health care practices, models, and policies thereby potentially and significantly impacting health for adult survivors. / Urban Bioethics