[Formula: see text]Examining parent and clinician views of a hospital-based pediatric neuropsychological service: a Canadian perspective.

Understanding how pediatric neuropsychological evaluations support families and the child's medical team is an important component of ensuring evidence-based care. For the first time within a Canadian context, we investigated the impact of neuropsychological assessments on parent knowledge, advocacy, and stress and the role of socioeconomic factors in parents' perceptions of the assessment. Responses from referring clinicians were also examined. As part of a hospital quality improvement project, 91 parents of children between the ages of 3 and 17 years (M = 8y7m; SD = 4y1m) and 45 clinician consumers (clinical staff who use neuropsychological services) completed one of two online questionnaires in English: Parent Overall Assessment of Supports and Testing, or Clinician Overall Assessment of Supports and Testing. Most parents indicated the neuropsychological evaluation promoted understanding of their child's cognitive profile and improved their ability to support their child at home and at school or in the community. Families characterized as being at higher social risk indicated that the evaluation led to more changes in how they approached their child at home than families with lower social risk status. Referring clinicians indicated neuropsychological reports were effective in communicating findings to them and patients/families. The most valuable sections of the report according to referring clinicians included the diagnosis/impression and recommendations sections. Parents and referral providers reported many benefits from the neuropsychological evaluation but also identified areas for service delivery improvement. Parent perceptions varied based on family and socio environmental factors, offering important targets for future research and clinical consideration.

Outcomes of haemoglobin Bart's hydrops fetalis following intrauterine transfusion in Ontario, Canada.

OBJECTIVES: With improved access to intrauterine transfusion (IUT), more fetuses with haemoglobin Bart's hydrops fetalis (HBHF; homozygous α0-thalassaemia) will survive. DESIGN: To evaluate the long-term outcome of affected fetuses with and without IUT in Ontario, Canada, we retrospectively collected data on IUTs and pregnancy outcomes in all cases of HBHF, from 1989 to 2014. Clinical outcome and neurocognitive profiles of long-term survivors were also collected and compared with data from 24 patients with transfusion-dependent ß-thalassaemia (TDT-ß). RESULTS: Of the 99 affected pregnancies (93 prenatally diagnosed), 68 resulted in miscarriage or elective termination of pregnancy. Twelve mothers (12%) continued their pregnancies without IUT, and none of those newborns survived the first week of life. All 13 fetuses that received IUT(s) were live-born, but 3 died due to severe hydrops at birth and 1 died due to infection. The remaining nine survivors, in comparison with TDT-ß patients, had earlier iron overload requiring iron chelation therapy. Endocrinopathies and short stature were more frequent in these patients. Neurocognitive outcome was not significantly affected in five patients who were assessed, and none were diagnosed with intellectual impairment. In three patients, MRI studies demonstrated brain white matter changes in keeping with 'silent' ischaemic infarcts. CONCLUSIONS: In patients with HBHF, IUT is associated with improved survival. While acceptable neurocognitive outcome can be expected, these patients have more clinical complications compared with their TDT-ß counterparts. The clinical and neurocognitive outcomes of HBHF should be discussed in detail when counselling and offering IUT for patients.

Implementing guidelines: Proposed definitions of neuropsychology services in pediatric oncology.

Several organizations have published guidelines for the neuropsychological care of survivors of childhood cancer. However, there is limited consensus in how these guidelines are applied. The model of neuropsychology service delivery is further complicated by the variable terminology used to describe recommended services. In an important first step to translate published guidelines into clinical practice, this paper proposes definitions for specific neuropsychological processes and services, with the goal of facilitating consistency across sites to foster future clinical program development and to clarify clinical practice guidelines.

Clinical neuropsychology practice and training in Canada.

OBJECTIVE: This invited paper provides information about professional neuropsychology issues in Canada and is part of a special issue addressing international perspectives on education, training, and practice in clinical neuropsychology. METHOD: Information was gathered from literature searches and personal communication with other neuropsychologists in Canada. RESULTS: Canada has a rich neuropsychological history. Neuropsychologists typically have doctoral-level education including relevant coursework and supervised practical experience. Licensure requirements vary across the 10 provinces and there are regional differences in salary. While training at the graduate and internship level mirrors that of our American colleagues, completion of a two-year postdoctoral fellowship in neuropsychology is not required to obtain employment in many settings and there are few postdoctoral training programs in this country. The majority of neuropsychologists are employed in institutional settings (e.g. hospitals, universities, rehabilitation facilities), with a growing number entering private practice or other settings. There are challenges in providing neuropsychological services to the diverse Canadian population and a need for assessment measures and normative data in multiple languages. CONCLUSIONS: Canadian neuropsychologists face important challenges in defining ourselves as distinct from other professions and other psychologists, in maintaining funding for high-quality training and research, in establishing neuropsychology-specific training and practice standards at the provincial or national level, and ensuring the clinical care that we provide is efficient and effective in meeting the needs of our patient populations and consumers, both within and outside of the publically funded health care system.

Pre-Morbid Developmental Vulnerabilities in Children With Newly Diagnosed Acute Lymphoblastic Leukemia (ALL).

BACKGROUND: Not all children with acute lymphoblastic leukemia (ALL) were developing in a typical manner prior to diagnosis. Pre-existing developmental vulnerabilities (DV) may be related to long-term neuropsychological sequelae following ALL treatment, yet little is known about the prevalence or nature of prior DV in this population. PROCEDURE: Children with newly diagnosed ALL aged 2-18 years (n = 115) were screened for DV by asking parents about the child's prior developmental history and with the Developmental Profile-3 (DP-3). RESULTS: Twenty-six participants (23% of total sample) screened positive for prior DV, with one or more of the following: delayed early motor and/or language milestones that required intervention (n = 17), prior diagnosis of Down syndrome (n = 3), prior diagnosis of autism spectrum disorder (n = 1), prior diagnosis of attention-deficit/hyperactivity disorder and/or learning disability (n = 6), or prior neurological conditions (n = 5). CONCLUSIONS: A sizable proportion of children with newly diagnosed ALL have pre-morbid DV that could potentially make them more vulnerable to reduced educational opportunities during treatment and neurotoxic late effects following treatment. Identification of the subset of children with ALL and DV is essential to direct early interventions and to study their long-term outcomes.

Long-term outcomes in survivors of childhood acute lymphoblastic leukemia.

Cure rates for childhood acute lymphoblastic leukemia (ALL) now exceed 80%. Consequently, there is a growing population of survivors of childhood ALL who are at risk for developing late sequelae of their cancer therapy. The risk of developing a late effect of therapy is particularly high in those survivors treated with cranial radiation or hematopoietic stem cell transplantation; however, most children who survive after treatment in the current era are expected to live normal lives with minimal or no longterm morbidity. In this article, the more common, serious late effects of ALL therapy are reviewed, the treatment exposures that predispose some survivors to their development are discussed, and the need for life-long risk-based medical care for all survivors of childhood ALL is emphasized.

Neurodevelopmental sequelae of pediatric acute lymphoblastic leukemia and its treatment.

This review will describe the neurocognitive outcomes associated with pediatric acute lymphoblastic leukemia (ALL) and its treatment. The literature is reviewed with the aim of addressing methodological issues, treatment factors, risks and moderators, special populations, relationship to neuroimaging findings, and directions for future research. It is concluded that neurocognitive outcomes for the majority of children with standard-risk ALL treated according to current chemotherapy protocols is relatively good, but subgroups of children are more significantly compromised. As medical treatments advance and survival rates continue to improve, neurocognitive outcomes and other quality of life indicators will become increasingly important. Preventing or ameliorating treatment-related neuropsychological sequelae represents the next major challenge in pediatric ALL.