This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.

Improving our ability to prevent or diminish suffering in dying children and adolescents and their families is dependent on the completion of high-quality pediatric end-of-life studies. The purpose of this article is to provide useful evidence-based strategies that have been used to implement and complete clinically useful pediatric end-of-life studies in oncology. The article describes specific peer-review and methodological challenges and links those to evidence-based solutions. The challenges and solutions described in this article are from eight end-of-life studies involving pediatric oncology patients. It is hoped that the solutions described here will benefit others in their efforts to implement pediatric end-of-life studies so that clinically useful findings will result and will improve the care of dying children and adolescents.

Although measuring health-related quality of life (HRQoL) in adolescents with cancer helps clinicians to personalize care for their patients, no previous studies have included HRQoL measurement at the time of diagnosis of osteosarcoma (OS) or acute myeloid leukemia (AML). The purpose of this study was to evaluate the feasibility of measuring adolescents' HRQoL at the time of their diagnosis of OS or AML, and to compare their ratings with those of their parents and of similarly diagnosed but younger patients aged 8- to 12- years. Participants included 126 patients (79 adolescents) and 130 parents (78 parents of adolescents); most completed the HRQoL instrument/s within 48 hours of the first chemotherapy cycle. Ninety-three percent of adolescents diagnosed with OS and 93% of those diagnosed with AML completed the HRQoL instruments. Agreement between the adolescents and their parents ranged from 0.29 to 0.71 (OS) and 0.44 to 0.62 (AML). In all domains, OS adolescents had significantly lower PedsQL v.4.0 scores than adolescents with AML. Our findings demonstrates the feasibility of measuring HRQoL in adolescents with OS or AML (and their parents) at the time of diagnosis, and thus their HRQoL ratings can be used to inform their cancer care from diagnosis forward.

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Use of the provider proxy-assessed HUI3 in pediatric cancer trials may result in a high proportion of missing data. Trials may benefit more from the use of HRQL measures that consider the acuity of the child's illness, domains specific and sensitive to both disease and treatment, and items that can be proxy-assessed independent of input from parent or patient. Evaluations that combine child self-reports with both parent and provider reports may ultimately provide the most reliable and comprehensive perspective on children's quality of life.