"A complex interface: Exploring sickle cell disease from a parent's perspective, after moving from Sub-Saharan Africa to North America".

INTRODUCTION: Sickle cell disease (SCD) is an inherited, multi-system, chronic disease with the highest prevalence affecting people of Sub-Saharan African descent. While major advances in SCD care have occurred over the last few decades in many African countries these advances are not readily available. Prior literature from Ghana and Kenya describe stigma, despair, and economic burden as well as hope when a child has SCD. When people migrate to North America with a child with SCD it is unknown whether their perception of the disease changes. We asked, "How do immigrant parents of children with SCD from Sub-Saharan Africa perceive, and manage the disease in the context of western medical care?" METHODS: The research question was explored with qualitative methodology, specifically focused ethnography. Semi-structured interviews were conducted with parent(s). The interviews were audio recorded, transcribed, and open coded. Rigor was determined through methodological coherence, appropriate and sufficient sampling, and iterative data collection and analysis. RESULTS: Twelve interviews were conducted. Identified themes are as follows: memories of SCD in Africa, the emotional journey towards acceptance, and parental approach to care for their child. CONCLUSIONS: Healthcare providers should be responsive to an immigrant families' needs and not expect linear progression of emotional acceptance to the diagnosis. Healthcare providers patience with the process helps establish trust, works to facilitate and encourage hope and acknowledges the strength of the families, and their dedication to their family member. Healthcare providers should acknowledge parents' sources of support (religion/family) and ensure parents are aware of medical advances.

Central nervous system (CNS) tumor trends in children in a western Canadian province: a population-based 22-year retrospective study.

In Canada, CNS tumors accounted for nearly 22% of the new childhood cancer diagnoses during 1995-2000 in the ≤ 15 year age group. The study's objective was to describe children and youth (age <20 years) diagnosed with CNS tumors in Alberta, Canada during a 22-year period using population-based data. The Alberta Cancer registry was used to extract information, including sex, age and geography, on all CNS (ICCC-3 III) tumor diagnoses during April 1, 1982, and March 31, 2004. Analyses included population summaries and rates. During 22 fiscal years, 568 Alberta children were diagnosed with CNS tumors and nearly 82% of the cases were malignant (461). The majority of cases were male (322, 57%) and the median age at diagnosis was 8 years. The crude rate per 100,000 children increased over the study period from 2.1 in 1983/1984 to 4.2 in 2003/2004. Astrocytoma was the most common diagnosis (257, 45%), followed by medulloblastoma (12%), mixed and unspecified glioma (9%) and ependymoma (9%). There were 86 diagnoses of juvenile pilocytic astrocytoma (55% male) and the crude rates per 100,000 increased during the study (<0.5 in the early years to 1.15 in 2003/2004). Our data suggests an emerging trend with the latter few years having a seemingly higher standardized incidence rate than earlier years. Further study is required to determine if the trend persists.

Leukemia and lymphoma incidence in children in Alberta, Canada: a population-based 22-year retrospective study.

There is a paucity of published literature on the epidemiology of childhood acute leukemias and lymphomas in Canada. This study was designed to describe children and youth (age <20 years) diagnosed with acute lymphoblastic leukemia (ALL), acute myeloid leukemia (AML), Hodgkin lymphoma (HL), and non-Hodgkin lymphoma (NHL) in Alberta, Canada, during 22 fiscal years. The Alberta Cancer Registry was used to extract data all ALL, AML, HL, and NHL cases diagnosed between April 1, 1982, and March 31, 2004. Population data for Alberta were also obtained. Descriptive statistics and cluster detection tests were used. During 22 years, 525, 117, 257, and 111 children (total = 1010) were diagnosed with ALL, AML, HL, and NHL, respectively. The median ages at diagnosis were 4, 11, 16, and 12 years for ALL, AML, HL, and NHL, respectively. The majority were male for ALL (287/525, 55%), AML (64/117, 55%), and NHL (81/111, 73%), and female for HL (133/257, 52%). The crude rates per 100,000 children were variable, without significant trends, over time and for each diagnosis; the median annual rates, per 100,000 children, were 3.00 (ranging from 1.87 to 3.75) for ALL, 0.62 (ranging from 0.26 to 1.27) for AML, 1.42 (ranging from 0.76 to 2.67) for HL, and 0.54 (ranging from 0.24 to 1.40) for NHL. A few potential spatiotemporal clusters were identified. They are likely due to small number of cases and plausibly clinically insignificant. Overall, childhood leukemia and lymphoma rates in Alberta have remained relatively stable, with no clear epidemiological trends and no significant spatiotemporal clustering. Further investigations are warranted to see if such stability continues and if spatiotemporal patterns arise from longer studies and studies in larger geographic regions with a larger sample size, whilst analyzing for other causal/associated factors, individual susceptibilities, and disease outcomes.

Childhood cancer trends in a western Canadian province: a population-based 22-year retrospective study.

OBJECTIVES: The objective of this study was to describe children and youth <20 years of age diagnosed with malignant cancer in Alberta, Canada over 22 years. We consider both temporal and geographical variations. PROCEDURE: The Alberta Cancer registry was used to extract information on cancer diagnoses during April 1, 1982, and March 31, 2004. Data extracted included gender, age at diagnosis, diagnosis, and geographic information. Population data were also obtained and analyses included descriptive summaries, rates, and cluster detection tests. RESULTS: During 22 fiscal years, 2,758 Alberta children and youth were diagnosed with malignant cancer. The average age of diagnosis was 9.6 years. The most common diagnoses were leukemia (24.8%), central nervous system (16.7%), lymphoma (15.8%), and other epithelial neoplasm and melanoma (11.2%). The number of malignant cases varied over year with crude rates of 13.4 per 100,000 in 1982/1983 to 17.3 per 100,000 in 2003/2004. Variation was also seen over diagnosis sub-group and geographic region. CONCLUSIONS: Although a relatively rare number of children and youth in Alberta were diagnosed with cancer during the study period, there were suggestions that an increase incidence in childhood cancer occurred in later years and some geographic areas have more cases than expected by chance. Further study is required to see if emerging trends continue and explain higher rate areas.

The effects of treatment for posterior fossa brain tumors on selective attention.

We sought to identify whether deficits in selective attention are present in pediatric brain tumor patients. Selective attention was assessed with covert-orienting, filtering, and visual-search tasks in 54 patients with either (1) posterior fossa (PF) tumors treated with cranial radiation and surgery (n = 22); (2) PF tumors treated with surgery alone (n = 17); or (3) non-CNS tumors (n = 15), who served as a patient control group. To account for normal development, patient performance was also compared with that of healthy age-matched controls (n = 10). We found that in PF tumor patients selective attention was impaired, regardless of whether they were treated with cranial radiation and surgery or surgery alone. However, patients treated with cranial radiation were most impaired. These patients may have greater damage to posterior brain regions know to mediate selective attention as the result of tumor location, effects of surgery, and higher doses of radiation to the posterior regions of the brain. These findings help to elucidate the potential impact of pediatric brain tumors and their treatment on discrete attentional skills.

Delivery of pediatric sleep services via telehealth: the Alberta experience and lessons learned.

Concerns regarding a child's sleep, identified by a caregiver or by the health care practitioner, are commonly raised but often left unexplored. Families in geographically isolated areas, with limited access to specialty services such as pediatric sleep medicine, are at increased risk for unmet treatment needs. Telehealth is a potential vehicle for delivery of these specialty services and overcoming barriers in diagnosing and treating sleep disorders in children by improving access and enhancing support for the families in their communities. This article describes the initiation of a pilot program in the delivery of multidisciplinary pediatric sleep medicine services via telehealth in Alberta, Canada.

Core neurocognitive functions in children treated for posterior fossa tumors.

Identifying cognitive deficits associated with pediatric brain tumors and their treatment is important in delineating the mechanisms of intellectual decline often associated with these diseases. The authors evaluated sustained attention, information processing speed, working memory, and IQ in 64 patients with posterior fossa tumors, including those treated with either: (a) surgery and cranial radiation (n = 32), and (b) surgery without radiation (n = 32). Ten patients treated for non-CNS solid tumors were included as a comparison group. The authors also examined the impact of relevant demographic and medical variables on neurocognitive outcome. The authors found that neither age at, nor time since, diagnosis predicted cognitive outcome in this sample. Further, sustained attention and working memory were largely intact and there were no differences between groups. Patients treated with cranial radiation demonstrated lowered short-form IQ and slow information processing speed: Patients treated with cranial radiation and who experienced postsurgical complications demonstrated the poorest performance. The authors consider information processing speed to be an excellent candidate mechanism in understanding the impact of cranial radiation on intellectual outcome.

Neurobehavioral functioning in children with fetal alcohol spectrum disorder.

Neurobehavioral functioning of 50 Canadian children diagnosed with Fetal Alcohol Spectrum Disorder (FASD) was evaluated. The aims of this study were to identify specific areas of weakness in neurobehavioral functioning, to examine whether neurobehavioral functioning was related to various predictor variables, and to determine which measures differentiated between children given a brain score of 2 (possible dysfunction) and 3 (probable dysfunction). Participants displayed difficulties with many aspects of intelligence, memory, executive functioning, and attention. Measures of Full scale and Verbal IQ, as well as memory for faces and numbers differentiated between children with a brain 2 and 3 ranking. An interesting pattern of strengths and weaknesses emerged as well as significant differences related to ethnic background, gender, and age. Aboriginal children and Caucasian children with FASD do not appear to show the same pattern of strengths and weaknesses in neurobehavioral functioning.

Soccer heading frequency predicts neuropsychological deficits.

This study investigated the presence of neuropsychological deficits associated with hitting the ball with one's head (heading) during soccer play. A neuro-cognitive test battery was administered to 60 male soccer players, high school, amateur and professional level, and 12 nonplaying control participants. The effects of currently reported heading behavior as well as that of estimated lifetime heading experience on neuropsychological test performance were examined. Players with the highest lifetime estimates of heading had poorer scores on scales measuring attention, concentration, cognitive flexibility and general intellectual functioning. Players' current level of heading was less predictive of neuro-cognitive level. Comparison of individual scores to age-appropriate norms revealed higher probabilities of clinical levels of impairment in players who reported greater lifetime frequencies of heading. Because of the worldwide popularity of the game, continued research is needed to assess the interaction between heading and soccer experience in the development of neuropsychological deficits associated with soccer play.