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1.
Cancer Med ; 12(7): 8676-8689, 2023 04.
Artigo em Inglês | MEDLINE | ID: mdl-36775957

RESUMO

BACKGROUND: Childhood cancer survivors face education and employment challenges due to physical, cognitive, and psychosocial effects of the disease and treatments, with few established programs to assist them. The objectives of this study were to describe the implementation of Goal Attainment Scaling (GAS) to evaluate an educational and vocational counseling program established for survivors of childhood cancer, and analyze patterns of program engagement and client outcomes, stratified by demographic and diagnostic characteristics. METHODS: A population-based retrospective cohort study of childhood cancer survivors who were engaged with the Pediatric Oncology Group of Ontario's School and Work Transitions Program (SWTP) between January 2015 and December 2018 was utilized. Survivors were followed from SWTP engagement until May 30, 2019 to capture goal attainment. Individual goals were summarized across various demographic, disease, and treatment strata. RESULTS: In total, 470 childhood cancer survivors (median age = 17.9, 58% male) set 4,208 goals in the SWTP during the study period. The mean length of observation was 130.8 weeks (SD = 56.9). Overall, 68% of the goals were achieved. Eighty-three percent of the goals related to further education. Clients diagnosed with a solid tumor set the most goals on average, followed by those with central nervous system tumors and leukemia/lymphoma. CONCLUSIONS: The SWTP assists childhood cancer survivors in realizing their academic and vocational goals. Application of GAS in this setting is a feasible way to evaluate program outcomes. From the volume and breadth of the GAS goals set and achieved, the overall success of the SWTP appears strong.


Assuntos
Sobreviventes de Câncer , Neoplasias do Sistema Nervoso Central , Humanos , Masculino , Criança , Adolescente , Feminino , Estudos Retrospectivos , Objetivos , Sobreviventes/psicologia , Aconselhamento
2.
Healthc Policy ; 15(3): 76-88, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-32176612

RESUMO

BACKGROUND: Cancer in children presents unique issues for diagnosis, treatment and survivorship care. Phase-specific comparative cost estimates are important for informing healthcare planning. OBJECTIVE: The aim of this paper is to compare direct medical costs of childhood cancer by phase of care in British Columbia (BC) and Ontario (ON). METHODS: For cancer patients diagnosed at <15 years of age and propensity-score-matched non-cancer controls, we applied standard costing methodology using population-based healthcare administrative data to estimate and compare phase-based costs by province. RESULTS: Phase-specific cancer-attributable costs were 2%-39% higher for ON than for BC. Leukemia pre-diagnosis costs and annual lymphoma continuing care costs were >50% higher in ON. Phase-specific in-patient hospital costs (the major cost category) represented 63%-82% of ON costs, versus 43%-73% of BC costs. Phase-specific diagnostic tests and procedures accounted for 1.0%-3.4% of ON costs and 2.8%-13.0% of BC costs. CONCLUSION: There are substantial cost differences between these two Canadian provinces, BC and ON, possibly identifying opportunities for healthcare planning improvement.


Assuntos
Custos de Cuidados de Saúde , Neoplasias/economia , Adolescente , Colúmbia Britânica , Criança , Pré-Escolar , Bases de Dados Factuais , Custos de Cuidados de Saúde/estatística & dados numéricos , Humanos , Ontário
3.
J Natl Cancer Inst ; 111(3): 322-330, 2019 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-30053118

RESUMO

BACKGROUND: Adolescents with cancer can receive care in pediatric or adult institutions. Survival often differs by locus, but little is known about relative health care utilization and costs. We estimated these in a population-based cohort of adolescents. METHODS: All Ontario adolescents (15.0-17.9 years) diagnosed with cancer between 1995 and 2010 were identified from provincial cancer registries. We compared health care resource utilization (hospitalizations, emergency department visits, same-day surgeries, outpatient chemotherapy, radiation, diagnostic/laboratory tests, physician services, home care) and costs (2012 Canadian dollars) during four discrete care phases-prediagnosis (60 days), initial (360 days), continuing (variable), and terminal (360 days)-between adolescents treated in pediatric vs adult institutions, for the whole cohort and within seven diagnostic categories. All statistical tests were two-sided. RESULTS: Of 1356 eligible adolescents, 691 and 665 were treated in adult and pediatric institutions, respectively. Hospitalization rates were higher in pediatric institutions during prediagnosis (14.9% vs 6.9%, P < .001), initial (95.1% vs 73.3%, P < .001), and continuing phases (43.2% vs 34.4%, P = .002), but similar (96.1% vs 96.3%, P = .93) during the terminal phase. Average length of stay was higher at pediatric institutions within most diagnoses and phases. For all diagnoses, median initial phase costs were higher in pediatric than adult institutions (eg, leukemia: $153 926 vs $102 418 per 360 days, P < .001; lymphoma: $65 025 vs $19 846, P < .001, respectively). CONCLUSIONS: The costs of caring for adolescents with the same malignancy are considerably higher in pediatric than adult institutions during most phases. Resource utilization, particularly hospitalization, drives much of the cost difference, making these data applicable to other jurisdictions.


Assuntos
Análise Custo-Benefício , Custos de Cuidados de Saúde , Recursos em Saúde/estatística & dados numéricos , Neoplasias/economia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , Adulto , Estudos de Coortes , Feminino , Seguimentos , Hospitalização , Humanos , Masculino , Neoplasias/terapia , Ontário , Prognóstico , Sistema de Registros
4.
Pediatr Blood Cancer ; 64(11)2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28500732

RESUMO

BACKGROUND: Cancer in children and adolescents presents unique issues regarding treatment and survivorship, but few studies have measured economic burden. We estimated health care costs by phase of cancer care, from the public payer perspective, in population-based cohorts. METHODS: Children newly diagnosed at ages 0 days-14.9 years and adolescents newly diagnosed at 15-19.9 years, from January 1, 1995 to June 30, 2010, were identified from Ontario cancer registries, and each matched to three noncancer controls. Data were linked with administrative records describing resource use for cancer and other health care. Total and net (patients minus controls) resource-specific costs ($CAD2012) were estimated using generalized estimating equations for four phases of care: prediagnosis (60 days), initial (360 days), continuing (variable), final (360 days). RESULTS: Mean ages at diagnosis were 6 years for children (N = 4,606) and 17 years for adolescents (N = 2,443). Mean net prediagnosis phase 60-day costs were $6,177 for children and $1,018 for adolescents. Costs for initial, continuing, and final phases were $138,161, $15,756, and $316,303 per 360 days for children, and $62,919, $7,071, and $242,008 for adolescents. The highest initial phase costs were for leukemia patients ($156,225 per 360 days for children and $171,275 for adolescents). The final phase was the most costly ($316,303 per 360 days for children and $242,008 for adolescents). CONCLUSIONS: Costs for children with cancer are much higher than for adolescents and much higher than those reported in adults. Comprehensive population-based long-term estimates of cancer costs are useful for health services planning and cost-effectiveness analysis.


Assuntos
Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Neoplasias/economia , Adolescente , Adulto , Estudos de Casos e Controles , Criança , Pré-Escolar , Análise Custo-Benefício , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/terapia , Ontário , Prognóstico , Sistema de Registros , Adulto Jovem
5.
Value Health ; 20(3): 345-356, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-28292479

RESUMO

BACKGROUND: Childhood and adolescent cancers are uncommon, but they have important economic and health impacts on patients, families, and health care systems. Few studies have measured the economic burden of care for childhood and adolescent cancers. OBJECTIVES: To estimate costs of cancer care in population-based cohorts of children and adolescents from the public payer perspective. METHODS: We identified patients with cancer, aged 91 days to 19 years, diagnosed from 1995 to 2009 using cancer registry data, and matched each to three noncancer controls. Using linked administrative health care records, we estimated total and net resource-specific costs (in 2012 Canadian dollars) during 90 days prediagnosis and 1 year postdiagnosis. RESULTS: Children (≤14 years old) numbered 4,396: 36% had leukemia, 21% central nervous system tumors, 10% lymphoma, and 33% other cancers. Adolescents (15-19 years old) numbered 2,329: 28.9% had lymphoma. Bone and soft tissue sarcoma, germ cell tumor, and thyroid carcinoma each comprised 12% to 13%. Mean net prediagnosis costs were $5,810 and $1,127 and mean net postdiagnosis costs were $136,413 and $62,326 for children and adolescents, respectively; the highest were for leukemia ($157,764 for children and $172,034 for adolescents). In both cohorts, costs were much higher for patients who died within 1 year of diagnosis. Inpatient hospitalization represented 69% to 74% of postdiagnosis costs. CONCLUSIONS: Treating children with cancer is costly, more costly than treating adolescents or adults. Substantial survival gains in children mean that treatment may still be very cost-effective. Comprehensive age-specific population-based cost estimates are essential to reliably assess the cost-effectiveness of cancer care for children and adolescents, and measure health system performance.


Assuntos
Saúde do Adolescente/economia , Saúde da Criança/economia , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde/estatística & dados numéricos , Neoplasias/economia , Adolescente , Adulto , Estudos de Casos e Controles , Neoplasias do Sistema Nervoso Central/diagnóstico , Neoplasias do Sistema Nervoso Central/economia , Neoplasias do Sistema Nervoso Central/epidemiologia , Criança , Pré-Escolar , Custos e Análise de Custo , Feminino , Humanos , Lactente , Leucemia/diagnóstico , Leucemia/economia , Leucemia/epidemiologia , Linfoma/diagnóstico , Linfoma/economia , Linfoma/epidemiologia , Masculino , Neoplasias/diagnóstico , Neoplasias/epidemiologia , Ontário/epidemiologia , Sistema de Registros , Sobrevida , Adulto Jovem
7.
J Cancer Surviv ; 10(4): 611-8, 2016 08.
Artigo em Inglês | MEDLINE | ID: mdl-26868681

RESUMO

PURPOSE: The purpose of the present study is to determine predictors of attendance at a network of publicly funded specialized survivor clinics by a population-based cohort of adult survivors of childhood cancer. METHODS: We conducted a retrospective study linking data on eligible patients identified in a provincial pediatric cancer registry with health administrative databases to determine attendance at five specialized survivor clinics in the Canadian province of Ontario between 1999 and 2012. Eligible survivors were treated for cancer at ≤18 years between 1986 and 2005, had survived ≥5 years from their most recent pediatric cancer event, and contributed ≥1 year of follow-up after age 18 years. We assessed the impact of cancer type, treatment intensity, cumulative chemotherapy doses, radiation, socioeconomic status, distance to nearest clinic, and care from a primary care physician (PCP) on attendance using recurrent event multivariable regression. RESULTS: Of 7482 children and adolescents treated for cancer over the study period, 3972 were eligible for study inclusion, of which 3912 successfully linked to administrative health data. After a median of 7.8 years (range 0.2-14.0) of follow-up, 1695/3912 (43.3 %) had attended at least one adult survivor clinic visit. Significantly increased rates of attendance were associated with female gender, higher treatment intensity, radiation, higher alkylating agent exposure, higher socioeconomic status, and an annual exam by a PCP. Distance significantly impacted attendance with survivors living >50 km away less likely to attend than those living within 10 km (relative rate 0.77, p = 0.003). CONCLUSION: Despite free access to survivor clinics, the majority of adult survivors of childhood cancer do not attend. IMPLICATIONS FOR CANCER SURVIVORS: Alternate models of care need to be developed and assessed, particularly for survivors living far from a specialized clinic and those at lower risk of developing late effects.


Assuntos
Assistência Ambulatorial/estatística & dados numéricos , Neoplasias/mortalidade , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/terapia , Sistema de Registros , Sobreviventes
8.
Cancer Epidemiol Biomarkers Prev ; 24(10): 1585-92, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26189768

RESUMO

BACKGROUND: The purpose was to describe the development of subsequent malignant neoplasms (SMN) among a population-based cohort of pediatric cancer patients, with a focus on SMNs that occurred within the first 5 years from diagnosis. METHODS: The cohort was identified from POGONIS, an active provincial registry. Cohort members were Ontario residents ages 0 to 14.9 years at primary diagnosis between January 1985 and December 2008. SMNs that developed <18 years were captured by POGONIS, whereas SMNs diagnosed later were identified through linkage. Cumulative incidence and standardized incidence ratios (SIR) were calculated, and proportional hazards models were estimated to examine factors associated with SMN development. RESULTS: A total of 7,920 patients were eligible. 2.4% (188/7,920) developed 197 SMNs. Mean follow-up time was 10.7 years (SD = 7.6 years; range, 0.0-26.4 years) with mean time to SMN of 8.5 years (SD = 6.3 years; range, 0.0-24.9 years). The SIR for the development of a SMN was 9.9 [95% confidence interval (CI), 8.6-11.4]. 40.6% of SMNs (80/197) developed within 5 years. Early SMNs were more likely to be leukemia and lymphoma. Factors associated with early SMN were primary diagnosis of a bone tumor (OR, 4.88; 95% CI, 1.52-15.60), exposure to radiotherapy (OR, 1.82; 95% CI, 1.02-3.22), and the highest dose of epipodophyllotoxin (OR, 3.74; 95% CI, 1.88-7.42). CONCLUSIONS: Over 40% of SMNs diagnosed in childhood cancer patients occurred in the first 5 years after diagnosis, suggesting a need for early and ongoing surveillance. IMPACT: The early development of certain SMNs reinforces the need for early and continued surveillance at all stages for pediatric cancer patients.


Assuntos
Previsões , Neoplasias/epidemiologia , Vigilância da População/métodos , Sistema de Registros , Adolescente , Adulto , Distribuição por Idade , Fatores Etários , Criança , Pré-Escolar , Terapia Combinada , Progressão da Doença , Feminino , Seguimentos , Humanos , Incidência , Lactente , Recém-Nascido , Masculino , Neoplasias/diagnóstico , Neoplasias/terapia , Ontário/epidemiologia , Estudos Retrospectivos , Fatores de Risco , Adulto Jovem
9.
Health Serv Res ; 50(4): 1021-42, 2015 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-25600956

RESUMO

OBJECTIVES: Characterize longitudinal changes in the use of medical care in adult survivors of childhood cancer. DATA SOURCES: The Childhood Cancer Survivor Study, a retrospective cohort study of 5+ year survivors of childhood cancer. STUDY DESIGN: Medical care was assessed at entry into the cohort (baseline) and at most recent questionnaire completion. Care at each time point was classified as no care, general care, or survivor-focused care. DATA COLLECTION: There were 6,176 eligible survivors. Multivariable models evaluated risk factors for reporting survivor-focused care or general medical care at baseline and no care at follow-up; and survivor-focused care at baseline and general care at follow-up. PRINCIPAL FINDINGS: Males (RR, 2.3; 95 percent CI 1.8-2.9), earning <$20,000/year (RR, 1.6; 95 percent CI 1.2-2.3) or ≤ high school education (RR, 2.5; 95 percent CI 1.6-3.8 and RR 2.0; 95 percent CI 1.5-2.7 for

Assuntos
Serviços de Saúde/estatística & dados numéricos , Neoplasias/epidemiologia , Sobreviventes/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Feminino , Nível de Saúde , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Estudos Retrospectivos , Fatores Sexuais , Fatores Socioeconômicos , Adulto Jovem
10.
Health Expect ; 18(6): 1941-55, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25052198

RESUMO

PURPOSE: To develop and validate scales to measure constructs that survivors of childhood cancer report as barriers and/or facilitators to the process of transitioning from paediatric to adult-oriented long-term follow-up (LTFU) care. METHODS: Qualitative interviews provided a dataset that were used to develop items for three new scales that measure cancer worry, self-management skills and expectations about adult care. These scales were field-tested in a sample of 250 survivors aged 15-26 years recruited from three Canadian hospitals between July 2011 and January 2012. Rasch Measurement Theory (RMT) analysis was used to identify the items that represent the best indicators of each scale using tests of validity (i.e. thresholds for item response options, item fit statistics, item locations, differential item function) and reliability (Person Separation Index). Traditional psychometric tests of measurement performance were also conducted. RESULTS: RMT led to the refinement of a 6-item Cancer Worry scale (focused on worry about cancer-related issues such as late effects), a 15-item Self-Management Skills scale (focused on skills an adolescent needs to acquire to manage their own health care), and a 12-item Expectations scale (about the nature of adult LTFU care). Our study provides preliminary evidence about the reliability and validity of these new scales (e.g. Person Separation Index ≥ 0.81; Cronbach's α ≥ 0.81; test-retest reliability ≥ 0.85). CONCLUSION: There is limited knowledge about the transition experience of childhood cancer survivors. These scales can be used to investigate barriers survivors face in the process of transition from paediatric to adult care.


Assuntos
Neoplasias/psicologia , Psicometria/métodos , Sobreviventes/psicologia , Transição para Assistência do Adulto , Adolescente , Adulto , Canadá , Feminino , Humanos , Masculino , Neoplasias/terapia , Qualidade de Vida , Reprodutibilidade dos Testes , Autocuidado/psicologia , Inquéritos e Questionários , Adulto Jovem
11.
BMC Cancer ; 14: 805, 2014 Nov 03.
Artigo em Inglês | MEDLINE | ID: mdl-25367402

RESUMO

BACKGROUND: Cancer is the leading cause of disease-related death in adolescents and young adults (AYA). Annual improvements in AYA cancer survival have been inferior to those observed in children and older adults. Prior studies of AYA with cancer have been limited by their focus on patients from select treatment centres, reducing generalizability, or by being population-based but lacking diagnostic and treatment details. There is a critical need to conduct population-based studies that capture detailed patient, disease, treatment and system-level data on all AYA regardless of treatment location. METHODS/DESIGN: We will create a cohort of all AYA (aged 15-21 years) at the time of diagnosis with any malignancy between 1992 and 2011 in Ontario, Canada (n = 5,394). Subjects will be identified through the Ontario Cancer Registry and the final cohort will be expanded to include 2012 diagnoses, as these data become available. Detailed diagnostic, treatment and outcome data for those patients treated at a pediatric cancer centre will be provided by a population-based pediatric cancer registry (n = 1,030). For 15-18 year olds treated at adult centres (n = 923) and all 19-21 year olds (n = 3396), trained abstractors will collect the comparable data elements from medical records. We will link these data to population-based administrative health data that include physician billings, hospitalizations and emergency room visits. This will allow descriptions of health care access and use prior to cancer diagnosis, and during and after treatment. DISCUSSION: The IMPACT cohort will serve as a platform for addressing questions that span the AYA cancer journey. These will include determining which factors influence where AYA receive care, the impact of locus of care on the types and intensity of cancer therapy, appropriateness of surveillance for disease recurrence, access to clinical trials, and receipt of palliative and survivor care. Findings using the IMPACT cohort have the potential to lead to changes in practice and cancer policy, reduce mortality, and improve quality of life for AYA with cancer. The IMPACT data platform will be a permanent resource, accessible to researchers across Canada.


Assuntos
Neoplasias/epidemiologia , Vigilância da População , Adolescente , Adulto , Canadá/epidemiologia , Estudos de Coortes , Feminino , História do Século XX , História do Século XXI , Humanos , Mortalidade , Neoplasias/diagnóstico , Neoplasias/história , Neoplasias/terapia , Ontário/epidemiologia , Avaliação de Resultados em Cuidados de Saúde , Administração dos Cuidados ao Paciente , Sistema de Registros , Tamanho da Amostra , Adulto Jovem
12.
Leuk Res ; 38(2): 204-9, 2014 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-24333116

RESUMO

The objectives were to describe times to diagnosis and initiation of treatment in pediatric ALL in Ontario from 1997 to 2007, and to measure their impact on OS and EFS. In 1000 children, the median times to diagnosis and treatment were both 1 day (IQR = 1-2). Those who began treatment >3 days after diagnosis had inferior OS (AHR = 2.49; 95% CI = 1.40-4.43; p = 0.002), and inferior EFS (AHR = 1.73; 95% CI = 1.01-2.96; p = 0.047) compared to those who began treatment ≤ 3 days after diagnosis. There was no statistically significant relationship between time to diagnosis and survival. Longer time to treatment was associated with worse survival in pediatric ALL; reasons for this relationship may be multi-factorial.


Assuntos
Diagnóstico Tardio/mortalidade , Leucemia-Linfoma Linfoblástico de Células Precursoras/diagnóstico , Leucemia-Linfoma Linfoblástico de Células Precursoras/mortalidade , Tempo para o Tratamento/estatística & dados numéricos , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Ontário/epidemiologia , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Análise de Sobrevida , Resultado do Tratamento
13.
Value Health ; 16(4): 639-46, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23796299

RESUMO

OBJECTIVES: We described previously the development of a set of quality indicators (QIs) of a childhood cancer system in Ontario, Canada. The purpose of this study was to determine the acceptability of the proposed set of QIs among stakeholders of the childhood cancer system. METHODS: A modified Delphi method was used to assess stakeholder agreement on the value of the proposed QIs. A QI evaluation survey was mailed to a stakeholder group of 23 multidisciplinary health care providers, survivors, parents, and policymakers who rated each QI on specific criteria. Prior to an in-person consensus meeting, the distribution of scores was provided to panel members. At the meeting, QIs were reevaluated and discussed in three successive rounds. QIs with 80% or more of panel agreement were considered endorsed. RESULTS: Overall, 20 QIs were endorsed by the panel, measuring all seven quality dimensions of Ontario's Cancer System Quality Index framework. Five QIs were endorsed by 100% of the panel as follows: Five-year event-free survival, chemotherapy admission delay, drug availability, sufficient multidisciplinary staff, and parent satisfaction. Although none of the QIs relating to end-of-life or Satellite care were endorsed, panel members emphasized the need to measure these components of the system. CONCLUSIONS: Standardized implementation of the 20 pediatric cancer QIs endorsed by the multidisciplinary stakeholder panel will provide ongoing monitoring of various dimensions of system quality and the development of benchmarks over time, greatly augmenting the ability to identify needed system improvements across populations and jurisdictions.


Assuntos
Atenção à Saúde/normas , Neoplasias/terapia , Indicadores de Qualidade em Assistência à Saúde , Qualidade da Assistência à Saúde , Adolescente , Antineoplásicos/uso terapêutico , Criança , Coleta de Dados , Técnica Delphi , Intervalo Livre de Doença , Humanos , Ontário , Pais/psicologia , Satisfação do Paciente , Melhoria de Qualidade
14.
Value Health ; 16(4): 647-54, 2013 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-23796300

RESUMO

OBJECTIVES: A set of indicators to assess the quality of a childhood cancer system has not been identified in any jurisdiction internationally, despite the movement toward increased accountability and provision of high-quality care with limited health care resources. This study was conducted to develop a set of quality indicators (QIs) of a childhood cancer control and health care delivery system in Ontario, Canada. METHODS: A systematic review and targeted gray literature search were conducted to identify potential childhood cancer QIs. A series of investigator focus group sessions followed to review all QIs identified in the literature, and to generate a provisional QI set for a childhood cancer system. QIs were evaluated by three content experts in a sequential selection process on the basis of a series of criteria to select a subset for presentation to stakeholders. Following an appraisal of the relevance of quality assessment frameworks, remaining QIs were mapped onto the Cancer System Quality Index framework. RESULTS: The systematic review yielded few relevant childhood cancer system QIs. Overall, 120 provisional QIs were developed by the investigator group. Based on median QI rating scores, representation across the childhood cancer continuum, and feasibility of data collection, a subset of 33 QIs was selected for stakeholder consideration. CONCLUSIONS: The subset of 33 QIs developed on the basis of a systematic literature review and consensus provides the basis for the selection of a set of QIs for ongoing, standardized monitoring of various dimensions of quality in a childhood cancer system.


Assuntos
Atenção à Saúde/normas , Neoplasias/terapia , Indicadores de Qualidade em Assistência à Saúde , Qualidade da Assistência à Saúde , Criança , Coleta de Dados , Estudos de Viabilidade , Grupos Focais , Humanos , Ontário , Melhoria de Qualidade
15.
J Cancer Surviv ; 6(3): 260-9, 2012 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-22547096

RESUMO

PURPOSE: Childhood cancer survivors require life-long care focused on the specific late effects that may arise from their cancer and its treatment. In many centers, survivors are required to transition from follow-up care in a paediatric cancer center, to care provided in an adult care setting. The purpose of this study was to identify the psychological factors involved in this transition to adult care long-term follow-up clinics. METHODS: Qualitative interviews were conducted with ten paediatric survivors still in paediatric care, as well as 28 adult survivors of whom 11 had transitioned successfully to adult care (attended three long-term follow-up (LTFU) appointments consecutively); ten who failed to transition (attended at least one LTFU appointment as an adult, but were inconsistent with subsequent attendance); and seven who had never transitioned (did not attend any LTFU care as an adult). Line-by-line coding was used to establish categories and themes. Constant comparison was used to examine relationships within and across codes and categories. RESULTS: Two overall categories and four subthemes were identified: (1) Identification with being a cancer survivor included the subthemes of 'cancer identity' and 'cancer a thing of the past' and; (2) Emotional components included the subthemes of 'fear and anxiety' and 'gratitude and gaining perspective'. The analysis revealed that the same factor could act as either a motivator or a hindrance to successful transition in different survivors (e.g., fear of recurrence of cancer might be a barrier or a facilitator depending on the survivor's life experience). CONCLUSIONS: Psychological factors are an important consideration when preparing cancer survivors for transition to adult long-term follow-up care. Identifying and addressing the individual psychological needs of childhood cancer survivors may improve the likelihood of their successful transition to adult care.


Assuntos
Atitude Frente a Saúde , Continuidade da Assistência ao Paciente/organização & administração , Assistência de Longa Duração/psicologia , Neoplasias/psicologia , Sobreviventes/psicologia , Transição para Assistência do Adulto , Adolescente , Adulto , Ansiedade/psicologia , Criança , Pré-Escolar , Atenção à Saúde , Feminino , Seguimentos , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/terapia , Prognóstico
16.
Int J Cancer ; 131(11): 2660-7, 2012 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-22396183

RESUMO

Gains in survival rates among adolescents and young adults (AYA) are reported from the USA to be lower than in both younger and older patients. Limiting factors include low accrual to clinical trials related to the type of institutional care. This study aimed to determine the incidence of cancer in the 15-29 age group in Ontario, and the 5-year survival of these cases by disease class, age at diagnosis group and highest level of institutional complexity of care. The primary data source was Cancer Care Ontario (CCO). Diseases were classified according to an AYA-specific system. Age at diagnosis was grouped as 15-19, 20-24 and 25-29 years; and institutional site of care was categorized as pediatric oncology group of Ontario (POGO) centers, regional cancer centers (RCC-tertiary care centers associated with CCO), RCC affiliate and satellite institutions and other institutions having no specialized cancer services. More than 10,000 incident cases were identified during 1990-2001. Carcinomas and lymphomas each accounted for > 20% of the total. Overall 5-year survival rate was 83%; significantly higher for lymphomas at POGO centers and RCC than elsewhere. About 40% of eligible AYA cases were treated at a POGO center and 25% of those were accrued to clinical trials. The low proportion of adolescents referred to pediatric cancer centers may result in a survival disadvantage for this group. All AYA, especially with lymphomas, should be referred to specialized centers. Accrual of AYA to clinical trials must be improved substantially.


Assuntos
Neoplasias/epidemiologia , Adolescente , Adulto , Humanos , Incidência , Neoplasias/mortalidade , Ontário/epidemiologia , Taxa de Sobrevida , Atenção Terciária à Saúde , Adulto Jovem
17.
J Pediatr Hematol Oncol ; 33(6): e226-30, 2011 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-21792028

RESUMO

Despite high survival rates, many survivors of hepatoblastoma develop late effects including ototoxicity and cardiomyopathy. With the goal of minimizing long-term toxicities, our institution treated hepatoblastoma with continuous infusion of doxorubicin and cisplatinum (PLADO), rather than short infusion or bolus dosing as used in other treatment protocols. This retrospective cohort study includes consecutive patients diagnosed between 1985 and 2007. Patients were scheduled for treatment with 6 cycles of continuous infusion of PLADO with resection after the third or fourth cycle. Audiograms and echocardiograms were obtained at baseline, after every 2 chemotherapy cycles and yearly after the completion of therapy. Fifty-five patients were treated (34 localized; 21 metastatic). Fifty-one patients received at least 1 cycle of PLADO. Median follow-up was 7.0 years (range, 0.11 to 17.8 y). Event-free and overall survival for these 51 patients were 72.2% (standard error 6.3%) and 75.6% (standard error 6.2%) respectively. Of the 38 survivors treated with cisplatin who had an audiogram during follow-up, 4 (11%) demonstrated severe (Brock grade 3/4) and 13 (34%) mild (Brock grade 1/2) hearing loss. At a median of 10.0 years (range, 5.0 to 13.0 y) after therapy, 2 of 41 (5%) patients who were still alive had evidence of cardiac dysfunction. Overall, continuous infusion of PLADO therapy resulted in survival rates consistent with those observed in intergroup studies, but rates of chronic cardiac and ototoxicity did not differ sufficiently from those observed after shorter infusion of PLADO therapy to warrant the use of continuous infusions.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/uso terapêutico , Hepatoblastoma/tratamento farmacológico , Neoplasias Hepáticas/tratamento farmacológico , Criança , Pré-Escolar , Cisplatino/administração & dosagem , Estudos de Coortes , Doxorrubicina/administração & dosagem , Feminino , Seguimentos , Hepatoblastoma/patologia , Humanos , Lactente , Recém-Nascido , Infusões Intravenosas , Neoplasias Hepáticas/patologia , Masculino , Estudos Retrospectivos , Taxa de Sobrevida , Resultado do Tratamento
18.
J Pediatr Hematol Oncol ; 33(6): 450-8, 2011 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-21646917

RESUMO

Five-year survival rates of childhood acute lymphoblastic leukemia (ALL) exceed 80% due to central nervous system-directed treatment including cranial radiation (CRT) and chemotherapy. However, these treatments are associated with neurocognitive compromise, the extent of which is correlated with higher dose and younger age at treatment. The aims of this study were to explore long-term neurocognitive outcomes in adult survivors of childhood ALL, and to identify measures sensitive to neurotoxicity in long-term survivors. We examined 24 adults who received 18 Gy CRT and chemotherapy for treatment of ALL between ages 2 and 15 years (median, 5.5). Time since diagnosis ranged from 6 to 26 years (median, 16.6). Younger age at diagnosis and longer time since diagnosis were associated with lower scores on a computerized battery that requires speed and accuracy across a number of domains (MicroCog), and other standardized neurocognitive tests. When compared with population norms, MicroCog indices were below average in survivors diagnosed with ALL before age 5, but only the reasoning/calculation index was below average in survivors diagnosed with ALL after age 5. In contrast, intelligence quotient (IQ) scores were average. In addition to confirming earlier studies showing that younger children are more vulnerable to treatment-related neurotoxicity, here we show that deficits exist many years post treatment even with a relatively lower dose of CRT, and that these deficits are especially evident on tasks involving rapid processing of information.


Assuntos
Protocolos de Quimioterapia Combinada Antineoplásica/efeitos adversos , Neoplasias Encefálicas/etiologia , Transtornos Cognitivos/etiologia , Irradiação Craniana/efeitos adversos , Leucemia-Linfoma Linfoblástico de Células Precursoras/mortalidade , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Sobreviventes , Adolescente , Adulto , Neoplasias Encefálicas/mortalidade , Criança , Pré-Escolar , Transtornos Cognitivos/mortalidade , Feminino , Humanos , Lactente , Inteligência , Masculino , Taxa de Sobrevida , Fatores de Tempo , Resultado do Tratamento , Adulto Jovem
19.
Pediatr Blood Cancer ; 57(3): 467-72, 2011 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-21280201

RESUMO

BACKGROUND: The optimal frequency of echocardiographic surveillance in asymptomatic childhood cancer survivors exposed to anthracyclines has not been established. We evaluated the effectiveness of performing surveillance echocardiograms according to the Children's Oncology Group's (COG) Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers in survivors ≥1 year from concluding therapy. METHODS: We reviewed all children treated at our institution with anthracycline chemotherapy from 1995 to 2003. We assessed the frequency of abnormal echocardiograms according to risk groups defined in the COG guidelines, and evaluated the risk factors for an abnormal echocardiogram using Cox proportional hazards modeling. RESULTS: At least one echocardiogram was completed by 469/603 (77.8%) eligible survivors. Mean diagnosis age was 7.7 (SD = 4.6) years. Mean cumulative doxorubicin-equivalent dose was 205 mg/m(2) (SD = 115). Survivors completed 1,013 echocardiograms (median = 2, range =1-10) beyond 1 year after concluding therapy. Seventy-nine (16.8%) survivors had an abnormal echocardiogram at a median of 2.9 years (range 0.01-9.8) from 1 year after concluding therapy. Anthracycline dose >300 mg/m(2) (hazard ratio [HR] 3.00; 95% CI 1.51-5.98), age 1-4 years at treatment (HR 1.89; 95% CI 1.08-3.31) and radiation to a field involving the heart (HR 1.73; 95% CI 1.08-2.76) predicted an increased risk of an abnormal echocardiogram; however, even survivors in the lower COG risk groups demonstrated abnormalities. CONCLUSION: Periodic echocardiographic surveillance in childhood cancer survivors can yield abnormalities that require further evaluation. Abnormalities may become evident as early as 1 year after the conclusion of therapy and can impact even those survivors considered to be at low risk.


Assuntos
Antraciclinas/efeitos adversos , Cardiomiopatias/induzido quimicamente , Ecocardiografia , Neoplasias/complicações , Guias de Prática Clínica como Assunto , Idade de Início , Antraciclinas/administração & dosagem , Cardiomiopatias/diagnóstico , Criança , Pré-Escolar , Doxorrubicina/administração & dosagem , Seguimentos , Humanos , Neoplasias/tratamento farmacológico , Vigilância da População , Estudos Retrospectivos , Fatores de Risco , Sobreviventes
20.
J Clin Pharmacol ; 51(1): 60-5, 2011 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-20457589

RESUMO

Following the introduction of mandatory Canadian folic acid flour fortification in mid-1997, the incidence of selected childhood cancers that declined in Ontario prior to and subsequent to this public policy initiative was examined. A population-based cohort study of all incident cases of childhood malignancy in Ontario between the years 1985 and 2006 was conducted. Participants were identified from a database provided by the Pediatric Oncology Group of Ontario and included children 0 to 4 years of age and 5 to 9 years of age who were diagnosed with cancer. Among children aged 0 to 4 years, the incidence rate of Wilms' tumor declined from 1.94 to 1.43 per 100,000 (incidence rate ratio 0.74, 95% confidence interval, 0.57-0.95). No significant change was seen in the prefortification vs postfortification time periods for acute lymphoblastic leukemia, brain cancers, or embryonal cancers among the 0- to 4-year or 5- to 9-year age groups. There was an approximately 30% reduction in risk of Wilms' tumor following introduction of the initiative. This corroborates a recent case-control study from Germany. These data may also provide some reassurance that universal flour fortification does not heighten the risk of pediatric cancer.


Assuntos
Ácido Fólico/administração & dosagem , Alimentos Fortificados , Neoplasias/prevenção & controle , Criança , Pré-Escolar , Estudos de Coortes , Ácido Fólico/farmacologia , Humanos , Lactente , Neoplasias Renais/epidemiologia , Neoplasias Renais/genética , Neoplasias Renais/prevenção & controle , Neoplasias/epidemiologia , Neoplasias/patologia , Ontário/epidemiologia , Sistema de Registros , Estudos Retrospectivos , Tumor de Wilms/epidemiologia , Tumor de Wilms/prevenção & controle
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