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Clinical interventions and research have mostly focused on the orthopedic, genetic, and pharmacological outcomes of individuals with osteogenesis imperfecta (OI), and although quality of life (QoL) has gained recognition as an important patient-outcome, it has received little attention in individuals with OI. This mixed-methods systematic review of the(More)
BACKGROUND Abandonment of therapy is a significant cause of paediatric cancer treatment failure in low- to middle-income countries (LMIC), but its impact has been underestimated. We performed a meta-analysis to determine the magnitude of abandonment in paediatric leukaemia in LMIC and sought to identify patient-, centre- and country-specific predictors of(More)
Children's quality of life (QOL) following bone marrow transplant (BMT) is an important but poorly understood concept. The aim of this paper is to critically review all research study designs to determine the QOL of childhood BMT recipients and to identify implications for research, practice and theory. The studies' methodological quality was evaluated(More)
The costs incurred by the families of children with cancer remain under researched. The objectives were to systematically review the literature and identify research and clinical implications. Thirteen studies were critically appraised using the Pediatric Quality Appraisal Questionnaire (PQAQ) [Ungar and Santos. Value Health 2003; 6:584-594]. Existing(More)
The provision of tele-practice symptom management is often without the provision of evidence-based guidelines. Under the auspices of the Pediatric Oncology Group of Ontario, a nursing task force was established to appraise the evidence and develop guidelines. Promising new efforts to enhance symptom management through tele-practice are emerging. Seven(More)
OBJECTIVES A diagnosis of cancer in childhood places a considerable economic burden on families, although costs are not well described. The objectives of this study were to identify and determine independent predictors of the direct and time costs incurred by such families. METHODS A prospective, cost-of-illness study was conducted in families of children(More)
Osteogenesis imperfecta (OI) is a genetic disorder (prevalence: 1:10,000), leading to bone fragility, frequent fractures, and varying degrees of physical limitations. Despite a substantial amount of research on the genetics, pathophysiology, and treatments related to OI, there remains a paucity of knowledge concerning the lived psychosocial experience of(More)
BACKGROUND Families of children with cancer are confronted with a broad range of direct costs (out-of-pocket expenses), but the nature of these costs is poorly understood. This study aimed to disaggregate and describe these costs. PROCEDURE A prospective, mixed method, cost-of-illness design was utilized. Starting in the fourth week following their(More)
In the United States, rising health care costs have led to discussion about bending the cost curve. To understand the true burden of disease and its treatment, costs of care, including those incurred by patients and their families, must be comprehensively assessed using psychometrically sound instruments. The Resource Utilization Questionnaire (RUQ) is a(More)