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Canadian adolescents and young adults with cancer: opportunity to improve coordination and level of care.

https://arctichealth.org/en/permalink/ahliterature138996
Source
CMAJ. 2011 Feb 22;183(3):E187-94
Publication Type
Article
Date
Feb-22-2011
Author
Prithwish De
Larry F Ellison
Ronald D Barr
Robert Semenciw
Loraine D Marrett
Hannah K Weir
Dagny Dryer
Eva Grunfeld
Author Affiliation
Canadian Cancer Society, Toronto, ON, Canada. pde@cancer.ca
Source
CMAJ. 2011 Feb 22;183(3):E187-94
Date
Feb-22-2011
Language
English
Publication Type
Article
Keywords
Adolescent
Adolescent Health Services
Adult
Canada - epidemiology
Continuity of Patient Care
Female
Humans
Incidence
Male
Neoplasms - epidemiology - therapy
Quality of Health Care
Survival Rate
Young Adult
Notes
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PubMed ID
21115674 View in PubMed
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The Canadian Childhood Cancer Surveillance and Control Program (CCCSCP): a status report.

https://arctichealth.org/en/permalink/ahliterature159914
Source
Pediatr Blood Cancer. 2008 Feb;50(2 Suppl):518-9
Publication Type
Article
Date
Feb-2008
Author
Ronald D Barr
Mark L Greenberg
Amanda K Shaw
Les Mery
Author Affiliation
Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada. rbarr@mcmaster.ca
Source
Pediatr Blood Cancer. 2008 Feb;50(2 Suppl):518-9
Date
Feb-2008
Language
English
Publication Type
Article
Keywords
Canada - epidemiology
Child
Data Collection - statistics & numerical data
Humans
Neoplasms - epidemiology - therapy
PubMed ID
18064655 View in PubMed
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Cancer surveillance and control in adolescents--similarities and contrasts between Canada and the United States.

https://arctichealth.org/en/permalink/ahliterature172572
Source
Pediatr Blood Cancer. 2006 Mar;46(3):273-7
Publication Type
Article
Date
Mar-2006
Author
Ronald D Barr
Mark L Greenberg
Author Affiliation
Pathology and Medicine, McMaster University, Hamilton, Ontario, Canada.
Source
Pediatr Blood Cancer. 2006 Mar;46(3):273-7
Date
Mar-2006
Language
English
Publication Type
Article
Keywords
Adolescent
Canada
Clinical Trials as Topic - methods
Female
Health Personnel - legislation & jurisprudence - organization & administration
Humans
Male
Neoplasms - epidemiology - psychology - therapy
Palliative Care - legislation & jurisprudence - methods
Papillomaviridae
Papillomavirus Infections - epidemiology - psychology - therapy
Patient Compliance - psychology
United States
Viral Vaccines - therapeutic use
Abstract
Opportunities for cancer prevention in adolescents range from limitation of sun exposure to the use of human papillomavirus vaccines. Those who develop malignant disease experience longer waiting times for diagnosis and treatment than do children, especially when referred to adult treatment centers, and they are less frequently enrolled in clinical trials. More attention to developmentally appropriate psychological support, enhancement of compliance/adherence, health promotion, and palliative care is needed. Improving cancer surveillance and control in adolescents in North America will require co-ordinated national efforts, involving pediatric and adult health care providers, institutions, and multiple levels of government.
PubMed ID
16206210 View in PubMed
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Childhood cancer registries in Ontario, Canada: lessons learned from a comparison of two registries.

https://arctichealth.org/en/permalink/ahliterature186041
Source
Int J Cancer. 2003 May 20;105(1):88-91
Publication Type
Article
Date
May-20-2003
Author
Mark L Greenberg
Ronald D Barr
Bruna DiMonte
Eva McLaughlin
Corin Greenberg
Author Affiliation
Hospital for Sick Children, University of Toronto, Toronto, Canada. mgreenberg@pogo.on.ca
Source
Int J Cancer. 2003 May 20;105(1):88-91
Date
May-20-2003
Language
English
Publication Type
Article
Keywords
Adolescent
Child
Child, Preschool
Glioma - classification - epidemiology - therapy
Histiocytosis - classification - epidemiology - therapy
Hospitals, Pediatric
Humans
Infant
Infant, Newborn
Neoplasms - classification - epidemiology - therapy
Ontario
Registries
Reproducibility of Results
Time Factors
Abstract
Two childhood cancer registries exist in Ontario. One (POGO) accrues by active registration by pediatric cancer centers, utilizing a histologically based classification system. The other accrues by passive linkage within a larger adult oriented cancer registry (OCR) using a topographically based classification. A reportedly high incidence of childhood cancer based on the latter registry prompted a comparison of the content of the two registries over a 2-year period with the hypothesis that there would be systematic accrual errors. All registrations in both registries for the specified period were reviewed systematically and validated by pathology reports. A small number (2.6%) of registrations in the passive registry were not incident cases, while 2 particular pathologic diagnoses were included in the histologically based registry and not the topographically based registry. These were low grade gliomas and Langerhans cell histiocytosis (LCH). The validated annual incident rate (15.6 per 100000 children 0-14 years of age, excluding LCH) is slightly higher than that reported in other industrialized countries. Ninety-six percent of children aged 0-14 were treated in pediatric oncology centers, while only 46% of adolescents aged 15-17 were treated in such centers. Of the remaining adolescents, more than one-third had lymphomas. This maldistribution of care provided for the young adolescent population may compromise their survival prospects. The results of this study should prompt revision of health care policy and patterns of service delivery.
PubMed ID
12672035 View in PubMed
Less detail
Source
Cancer Treat Rev. 2007 Nov;33(7):597-602
Publication Type
Article
Date
Nov-2007
Author
Ronald D Barr
Author Affiliation
Health Sciences Centre, Room 3N27, McMaster University, 1200 Main Street West, Hamilton, Ont., Canada L8S 4J9. rbarr@mcmaster.ca
Source
Cancer Treat Rev. 2007 Nov;33(7):597-602
Date
Nov-2007
Language
English
Publication Type
Article
Keywords
Adolescent
Humans
Neoplasms - epidemiology
Ontario - epidemiology
Prevalence
Risk factors
Abstract
Adolescence, spanning 15-19 years of age, is a time of developmental transition from childhood to adult life. The spectrum of cancers affecting this age group reflects a similar transition. The common malignant diseases of childhood - leukemias, lymphomas, tumors of the central nervous system and embryonal solid tumors (such as nephroblastoma and neuroblastoma) - are replaced in relative frequency by sarcomas of bone and soft tissue, and tumors of the male and female genital tracts. Moreover, the epithelial tumors (carcinomas), so prevalent in adults, occur (albeit at much lower frequencies) in adolescents. Within individual tumor types, biological features may be distinctive in this age group. Examples are the high prevalence of poor prognostic determinants in acute lymphoblastic leukemia and histologically higher grade forms of astrocytic/glial tumors. Particular challenges in addressing the common tumors of adolescence include the development of better categorization, especially of soft tissue sarcomas, and exploring these diseases in this age group within the developing world where most adolescents reside.
PubMed ID
17222981 View in PubMed
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Delays in diagnosis and treatment among children and adolescents with cancer in Canada.

https://arctichealth.org/en/permalink/ahliterature157408
Source
Pediatr Blood Cancer. 2008 Oct;51(4):468-74
Publication Type
Article
Date
Oct-2008
Author
Tam Dang-Tan
Helen Trottier
Leslie S Mery
Howard I Morrison
Ronald D Barr
Mark L Greenberg
Eduardo L Franco
Author Affiliation
Departments of Oncology and Epidemiology, McGill University, Montreal, Canada.
Source
Pediatr Blood Cancer. 2008 Oct;51(4):468-74
Date
Oct-2008
Language
English
Publication Type
Article
Keywords
Adolescent
Canada
Child
Child, Preschool
Delivery of Health Care
Female
Humans
Infant
Infant, Newborn
Male
Neoplasms - classification - diagnosis - epidemiology - therapy
Time Factors
Abstract
Few studies have investigated delays in diagnosis and treatment among children and adolescents with cancer, especially from the perspective of an entire country. Detailed understanding of delays along the continuum of cancer patient care is important in order to establish appropriate benchmarks for timely oncological care. Our objective was to characterise the different components of delay in 2,896 Canadian children and adolescents (aged 0-19 years) with cancer that were enrolled in the Treatment and Outcome Surveillance component of the Canadian Childhood Cancer Surveillance and Control Program from 1995 to 2000.
We examined median and standardised means concerning the distribution of delay times across categories of pertinent variables and over time. The word "delay" was used simply to represent a time interval, measured in days, without implying whether this interval exceeded a particular threshold of clinical acceptability.
The median times (and inter-quartile ranges) for patient, diagnosis and healthcare system delays for all cancers were 9 (1-31), 30 (13-69) and 12 (4-35) days, respectively. The median total delay was 34 (16-76) days.
Patient and referral delays were the longest time segments influencing timely diagnosis. Differences in delays were observed across age groups, cancer types and geographical regions. There was a significant trend for decreasing delays to diagnosis and treatment.
Notes
Comment In: Pediatr Blood Cancer. 2008 Oct;51(4):447-818623208
PubMed ID
18454472 View in PubMed
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Determinants of delays in treatment initiation in children and adolescents diagnosed with leukemia or lymphoma in Canada.

https://arctichealth.org/en/permalink/ahliterature148255
Source
Int J Cancer. 2010 Apr 15;126(8):1936-43
Publication Type
Article
Date
Apr-15-2010
Author
Tam Dang-Tan
Helen Trottier
Leslie S Mery
Howard I Morrison
Ronald D Barr
Mark L Greenberg
Eduardo L Franco
Author Affiliation
Department of Oncology, McGill University, Montreal, Canada H2W1S6.
Source
Int J Cancer. 2010 Apr 15;126(8):1936-43
Date
Apr-15-2010
Language
English
Publication Type
Article
Keywords
Adolescent
Age Factors
Age of Onset
Canada
Child
Child, Preschool
Cohort Studies
Delivery of Health Care - statistics & numerical data
Female
Humans
Infant
Leukemia - diagnosis - therapy
Lymphoma - diagnosis - therapy
Male
Referral and Consultation
Risk factors
Socioeconomic Factors
Time
Abstract
Minimizing delays that may occur along the cancer care pathway requires an understanding of their determinants. Few studies on childhood cancers have been published on the factors that influence the time it takes for patients to get a first medical consultation (patient delay) and treatment (health care system [HCS] delay) once cancer symptoms have been recognized. Our objective was to assess factors related to disease, patient and HCS on patient and HCS delay for children and adolescents with leukemias and lymphomas in Canada. A prospective cohort study was conducted on subjects enrolled in the Treatment and Outcomes Surveillance program of the Canadian Childhood Cancer Surveillance and Control Program, a national surveillance program. We studied 963 leukemia and 397 lymphoma patients who were less than 19-years old at diagnosis in 1995-2000. Logistic regression models were used to measure the associations between candidate predictive factors and delays. Age was positively associated with patient delay for both leukemia and lymphoma patients, but not with HCS delay. Patients first seen in a hospital emergency room had a lower risk of HCS delay than patients first seen by a general practitioner. Cancer subtype was associated with patient delay for leukemia patients, and HCS delay for lymphoma patients. Longer patient delay was associated with a lower risk of long HCS delay for both cancers. Factors related to the patients, their disease and the HCS may exert different influences on varying segments of the care pathway of leukemia and lymphoma patients.
PubMed ID
19795458 View in PubMed
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Evidence about HUI and hemophilia in response to Young et al. "How well does the Canadian hemophilia outcomes-kids' life assessment tool (CHO-KLAT) measure the quality of life of boys with hemophilia?".

https://arctichealth.org/en/permalink/ahliterature165613
Source
Pediatr Blood Cancer. 2007 Dec;49(7):1047-8; author reply 1049
Publication Type
Article
Date
Dec-2007

Health status and health-related quality of life associated with von Willebrand disease.

https://arctichealth.org/en/permalink/ahliterature185369
Source
Am J Hematol. 2003 Jun;73(2):108-14
Publication Type
Article
Date
Jun-2003
Author
Ronald D Barr
Julia Sek
John Horsman
William Furlong
Mahassen Saleh
Mohan Pai
Irwin Walker
Author Affiliation
McMaster University Medical Centre, Hamilton Health Sciences, Hamilton, Ontario, Canada. rbarr@mcmaster.ca
Source
Am J Hematol. 2003 Jun;73(2):108-14
Date
Jun-2003
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Aged
Canada - epidemiology
Cognition
Cohort Studies
Cross-Sectional Studies
Emotions
Female
Health status
Humans
Male
Middle Aged
Pain - physiopathology
Quality of Life
Sex Characteristics
von Willebrand Diseases - epidemiology - physiopathology - psychology
Abstract
Von Willebrand disease (VWD) is the commonest inherited disorder of hemostasis and the majority of women with this disorder experience excessive uterine bleeding. Yet very little information is available on the health-related quality of life (HRQL) in individuals with VWD. To test the a priori hypotheses that these individuals will have poorer HRQL than members of the general population, and that this burden of morbidity will correlate with the severity of VWD, a cross-sectional study was undertaken of a population-based cohort in a regional hemophilia program in Ontario, Canada. A survey was made of individuals over 13 years of age with VWD who self-reported their health status using a standard 15 item questionnaire. The responses were converted to levels in the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) health status classification systems to form multi-element vectors from which single attribute morbidity and overall HRQL utility scores were determined. As a group, individuals with VWD were shown to have poorer HRQL than members of the general population and those with Type 2 disease carried a greater burden of overall morbidity than those with Type 1 disorder. Morbidity was evident mainly in the attributes of emotion, cognition with pain. A striking difference was observed between males and females, with the latter having overall HRQL utility scores similar to those reported previously for HIV positive, severe hemophiliacs. It is possible that this remarkable burden of morbidity reflects chronic iron deficiency associated with menorrhagia. A national study has been proposed to address this likelihood as it offers an opportunity for effective therapeutic intervention (iron supplementation) with a concomitant gain in health status and HRQL.
PubMed ID
12749012 View in PubMed
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Health status in survivors of cancer in childhood and adolescence.

https://arctichealth.org/en/permalink/ahliterature171188
Source
Qual Life Res. 2006 Feb;15(1):143-57
Publication Type
Article
Date
Feb-2006
Author
Lisa Pogany
Ronald D Barr
Amanda Shaw
Kathy N Speechley
Maru Barrera
Elizabeth Maunsell
Author Affiliation
Public Health Agency of Canada, Centre for Chronic Disease Prevention and Control, Ottawa, Canada. lisa_pogany@phac-aspc.gc.ca
Source
Qual Life Res. 2006 Feb;15(1):143-57
Date
Feb-2006
Language
English
Publication Type
Article
Keywords
Adolescent
Adult
Canada - epidemiology
Child
Child, Preschool
Cohort Studies
Female
Health Status Indicators
Humans
Logistic Models
Male
Neoplasms - physiopathology - rehabilitation
Odds Ratio
Outcome Assessment (Health Care)
Psychometrics - instrumentation
Psychomotor Disorders - epidemiology - etiology
Quality of Life
Questionnaires
Retrospective Studies
Survivors - psychology - statistics & numerical data
Abstract
Assessing health status in survivors of childhood cancer is increasingly important due to improved survival rates. However, there are limited estimates available for this population based on large samples and compared to population controls.
In a retrospective cohort study, 2,152 long-term survivors and 2,432 controls, aged 5-37, who had survived cancer during childhood or adolescence were compared on the Health Utilities Index Mark III (HUI3). Descriptive and logistic regression analyses were used to assess the effect of age at diagnosis, type of cancer and therapy received on HUI3 domains.
More survivors than controls showed deficits in dexterity, ambulation, hearing, speech and cognition but not in vision, emotion or pain. The largest numbers of survivors reporting excess impairment was found in the cognition attribute. Survivors of central nervous system tumors were most likely to show impairments across multiple domains. Lastly, impairments in cognition were found most commonly in survivors exposed to cranio-spinal radiation at young ages.
Seventy-five percent of childhood cancer survivors and 80% of controls were found to have two or fewer impaired attributes. Those reporting impairments that were most likely to be of clinical relevance were among survivors diagnosed with central nervous system and bone tumours, and those exposed to cranial radiation as young children. Tools assessing health status should be included in prospective trials to more clearly assess the contribution of therapy to reduced long-term health status.
Notes
Comment In: Qual Life Res. 2006 Feb;15(1):159-6016411039
PubMed ID
16411038 View in PubMed
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19 records – page 1 of 2.