Cs Rae

Surveillance and survival among adolescents and young adults with cancer in Ontario, Canada

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.

Bleeding disorders, menorrhagia and iron deficiency: impacts on health-related quality of life.

von Willebrand disease (VWD) is a bleeding disorder that occurs in up to 1% of the general population. The great majority of females with VWD experience menorrhagia. The morbidity burden in females with VWD may relate to iron deficiency resulting from menorrhagia. To explore relationships between bleeding disorders, menorrhagia, iron deficiency and the outcomes of health‐related quality of life (HRQL) and educational attainment. All subjects with VWD, and females with other bleeding disorders, in the Canadian national registry who were more than 12 years of age were eligible for survey. Survey measures included the HEALTH UTILITIES INDEX®; abridged Clinical History Assessment Tool; socio‐demographic questions and serum ferritin. Statistical analyses included testing differences among groups of means using analysis of variance and of proportions using chi‐squared test. Significant size differences in mean HRQL scores were detected between VWD females and both females with other bleeding disorders [diff = (−0.08); P = 0.017] and VWD males [diff = (−0.07); P = 0.039]. Mean HRQL scores differed between females with and without menorrhagia (P < 0.001). Mean HRQL scores were not significantly different between females with and without iron deficiency. Educational attainment was not associated with disease group, menorrhagia status or iron status. Females with VWD have a greater morbidity burden than females in the general population, females with other bleeding disorders and males with VWD. Menorrhagia is associated with low HRQL scores in females with bleeding disorders, including VWD. Further investigation should assess how menorrhagia impacts HRQL in females with bleeding disorders.

Health‐related quality of life among children with acute lymphoblastic leukemia

The objective was to quantify the health‐related quality of life (HRQL) of children treated for acute lymphoblastic leukemia (ALL) and identify specific disabilities for remediation.

Health-Related Quality of Life in Survivors of High-Risk Neuroblastoma After Stem Cell Transplant: A National Population-Based Perspective

This study aimed to estimate the burden of morbidity, in terms of health‐related quality of life (HRQL), in survivors of high‐risk neuroblastoma (NBL) after myeloablative chemotherapy followed by autologous hematopoietic stem cell transplant (HSCT).