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Centre for Chronic Disease Prevention and Control
The goal of the CCCSCP is to contribute toward reducing mortality, improving the prognosis, and reducing the suffering and burden of childhood cancer. The CCCSCP's nationwide information system, in collaboration with treatment centres and cancer registries, plans to accomplish this goal through the following activities:
The CCCSCP is overseen by a management committee of childhood cancer experts and interest groups. Most components have a working group composed of LCDC officials and external stakeholders. Current CCCSCP Projects The CCCSCP is currently involved in four projects: 1. Treatment and Outcome Surveillance The Treatment and Outcome Surveillance component of the CCCSCP, is a nationwide population-based surveillance program based in pediatric oncology centres and provincial cancer registries across Canada. Diagnosis (including the stage at diagnosis), treatment (i.e., surgeries, radiotherapy, chemotherapy) and outcome (i.e., responses, relapses, complications) information is collected from childhood cancer patients at diagnosis and at 6-monthly follow-ups for five years. The main objectives of this component are to do the following:
All provinces, except Ontario, have participated in this component since 1995. In Ontario, partial data from the Pediatric Oncology Group of Ontario (POGO) are used for inclusion in national statistics. To date, we are registering approximately 600 new cases per year (excluding subjects from Ontario), with 1997 data being close to completion. Participation rates are very high (more than 95% at most centres). Minimal information is collected on subjects who refuse to participate. Some centres have been audited in March 1998 and other centres will be audited in the summer and fall 1999. The CCCSCP is currently conducting a detailed quality control evaluation of the data. All centres will receive an evaluation and be asked to help resolve issues raised. This quality control effort is in preparation for the Treatment and Outcome Annual Report to be completed this summer. Contingent upon funding, a prospective long-term follow-up surveillance system of late effects is planned among subjects included in the Treatment and Outcome Surveillance component once the 5-year follow-up is complete. 2. Retrospective Cohort Study of the Psychosocial and Physical Health of Childhood Cancer Survivors (Late Effects Study) The Late Effects component of the CCCSCP is a retrospective cohort study of childhood cancer survivors who were diagnosed between 1981 - 1990 in one of twelve pediatric oncology centres across Canada. The main goal of the study is to assess the long-term psychosocial and physical effects of the cancer and its treatment on children and young adults who survived at least five years post-diagnosis, and to develop a risk profile of late effects. These data will be useful in recognizing and understanding the unique health care needs of survivors to ensure that limited health care resources are appropriately allocated. Data for the study were gathered using an age appropriate, self-administered questionnaire designed to measure subjects' health related quality of life. Cases who survived cancer (or their parents if under 16 years of age) along with an equal number of sex- and age-matched population controls were asked to complete and return the mail-out questionnaire which included items on the following topics:
Additionally, clinical data were extracted from the medical charts of case subjects including information on diagnosis (ie., morphology, site and stage at diagnosis), treatment procedures (ie., chemotherapy, surgery, radiotherapy) and outcomes (ie., relapses, death). To date we have 4,700 completed questionnaires entered at LCDC and clinical information for approximately 2,200 cases. We expect an additional 100-200 questionnaires by the end of May at which point data collection will cease. Data cleaning and quality control will be conducted during the summer and analysis should proceed in the fall of 2000. 3. Identification of Risk Factors for Developing Childhood Cancers (Etiology) The overall goal of the etiology component of the Canadian Childhood Cancer Surveillance and Control Program (CCCSCP) was to establish a national, population-based database of childhood cancer cases and matched controls with detailed information on major putative risk factors. The database would be used to identify individuals or groups at high risk for developing cancer, thus permitting the conduct of more focussed case-control studies. Currently, the Etiololgy component is comprised of three studies: 1. The original risk factor study; 2. A nutritional mail-out pilot survey; and 3. An environmental linkage study. The original case-control risk factor study being conducted in Quebec includes all patients diagnosed with acute lymphocytic leukemia (ALL) or brain tumours during a five-year period (1994-1998 for ALL, and 1995-1999 for brain tumours) and an equal number of sex- and age-matched population controls. Information about parental exposures during the prenatal period and the pregnancy itself, along with childhood exposures prior to diagnosis is collected from subjects' parents using a telephone interview. Detailed questions are elicited under the following broad categories: family sociodemographics and medical history; maternal reproductive history; residential history; lifestyle, occupational, and household exposures. Currently, information from 923 subjects has been collected and compiled at LCDC, including 293 cases of ALL and 84 brain tumour patients. By the end of next fiscal year (April, 2001) we expect to have data from nearly 300 ALL and 150 brain cases, together with their controls. Analysis has, thus far, focussed on risk of ALL associated with maternal use of medication during pregnancy. Other potential risk factors will be examined in the next fall. The nutrition pilot study consisted of re-contacting subjects who participated in the Western Canada Childhood Leukemia Case-Control Study (1990-1994) and asking them to complete a mail-out survey. The survey included a food-frequency table to elicit the dietary habits of the mother in the year prior to and during pregnancy, and of the infant during the first two years of life. Dietary information has been collected from 85 leukemia cases and 75 population controls residing in British Columbia, Saskatchewan and Manitoba. Conversion to nutrient content and preliminary analysis should begin in the fall of 2000. In British Columbia, cases of ALL (aged 0-14 at diagnosis) and population controls who participated in a previous Western Canadian study of leukemia (1990-1995) were re-contacted and asked to complete a nutritional questionnaire. The mail-out supplement includes a food-frequency table to elicit the dietary habits of the mother in the year prior to and during pregnancy, and of the infant during the first 2 years of life. Finally, to examine the risk of childhood leukemia associated with proximity to various industrial plants, the residential histories of 399 subjects from the Western Canada Childhood Leukemia Case-Control Study were linked to the location of four types of industrial plants (pulp, paper, petroleum, primary non-ferrous metals) as documented in the Environmental Quality Database at LCDC. Analysis of proximity to pulp mills is complete, while risk associated with living near the other three sites will be examined this summer/fall. 4. The Medical Care Cost of Childhood Cancer in Manitoba, 1990-1995 The main objective of this study was to estimate the medical care cost of childhood cancer in Manitoba, and to determine the factors which influence the cost of treating childhood cancer. All children diagnosed with cancer (age 0-14 at diagnosis) between 1990 and 1992 in Manitoba are included in this retrospective study. Relevant treatment data was collected (from chart extraction) for three years up to December 31, 1995. All the medical care information was collected in three settings: the Children's Hospital, the CancerCare Manitoba cancer clinic, and the emergency room of Children's Hospital. The following diagnostic/treatment information were collected: diagnostic procedures, treatment procedures, physician visits, and hospitalizations (hospital per diem rate). The prices of most procedures were obtained from the Manitoba Health Services Insurance Plan. A total of 118 childhood cancer patients were included. The results indicate that inpatient hospitalization accounted for 59% of the total cost, followed by bone marrow transplant (9%), medications (8%), lab investigations (7%) and physician fees (7%) (Figure 1). Overall, the average cost for the first, second and third year following diagnosis was $50,902, $13,939 and $6,769 respectively. The average medical costs within the first year after diagnosis for patients who survived were lower than for those who did not survive (Figure 2). Among the four most common cancer sites, neuroblastomas were the most expensive to treat in the first year following diagnosis, followed by leukemias, brain tumours and lymphomas. The average costs of the second year and the third year following diagnosis were dramatically less than that of the first year following diagnosis. The average total cost for the initial treatment of a childhood cancer patient (over three years) was $71,610. Life expectancy at diagnosis was estimated at 43 years, giving an average cost per potential year of life saved of $1,626. By applying a 3% discount rate, the discounted cost per potential year of life saved of $2,831 was estimated.
Figure
1. Distribution of Total Medical Care Costs
of Childhood Cancer, Manitoba, 1990-1995
Figure 2. The Average Cost of the First Year After Diagnosis By Vital Status and Cancer Site
The Medical Care Cost of Childhood Cancer in Manitoba, 1990-1995 - phase II The Phase II study has collected information on 41 cancer patients age 15 to 19 years. The data collection and analysis is complete. The leading cost is inpatient hospitalization which accounted for 37% of total cost, followed by BMT (25%), physician fees (11%), medications (9%) and lab investigations (7%). The manuscript preparation is under way. Epidemiology of Childhood Cancer - Book Review
Although childhood cancer accounts for only about 1% of all cancers in Canada and even fewer deaths, its public health importance is high, in part because of the long-term health implications for survivors. Childhood cancer differs in many ways from its adult counterpart, including site of occurrence, as well as histologic and clinical behaviour, and thus needs to be considered separately. Though there are many useful textbooks about the epidemiology of cancer, Epidemiology of Childhood Cancer is the first to synthesize and describe the various aspects of childhood cancer epidemiology in one monograph. This book is an excellent primer for anyone contemplating research into the epidemiology of childhood cancer. The review of etiologic studies is exhaustive and critical, though an update will need to be done shortly as the monograph only includes studies published before mid-1997. In such a quickly evolving field, especially when combined with molecular biology, regular updates are necessary. Moreover, the monograph should expand its discussion of biologic mechanisms; though mentioned in certain sections, a separate chapter may be useful. Nonetheless, Epidemiology of Childhood Cancer is an extremely thorough and well-documented reference book including clear and detailed tables and an extensive bibliography. It should be included in the library of anyone interested in childhood cancer epidemiology. This Battle Which I Must Fight - Childhood Cancer Monograph
Since its launch in August 1996, over 10,000 copies of the Monograph have been distributed by pediatric oncology centres, the Candlelighters Childhood Cancer Foundation, Leucan, and the Laboratory Centre for Disease Control. It was the third most popular Cancer Bureau publication in 1997/98 averaging approximately a thousand hits to the website each month. The publication is a winner of two 1997 International Gold Quill Awards of Merit, for outstanding achievement in (technical writing and design) health care and organizational communication, and the 1997 Hygeia Award for excellence in Canadian health care communications. Reply cards, enclosed in each copy of the Monograph, have provided very valuable comments and suggestions from readers. Most respondents found the Monograph very easy to read and informative and encouraged us to increase its availability ( i.e., to libraries, schools and bookstores). Many respondents found the document to be a powerful, interesting and educational resource and especially liked the personal touch of the pictures, poems and stories. We are very grateful for these precious contributions by children and their families. Several teachers and librarians were using the Monograph to educate others about childhood cancer. We encourage their role. Finally, we received encouragement to produce a second Monograph which will be initiated for the year 2001/2002.
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by
Amanda Shaw
The
Childhood Cancer Monograph, filled with poems, pictures and stories by
children with cancer and their families, offers insight into childhood
cancer and its diagnosis, the differences between adult and childhood
cancer, the causes of childhood cancer, cancer treatment and likely outcomes,
the medical needs of the child undergoing cancer treatment, the emotional
and social impact of cancer on the child and family, and resources for
information and support on childhood cancer.