Proton therapy and limited surgery for paediatric and adolescent patients with craniopharyngioma (RT2CR): a single-arm, phase 2 study.

Background: Compared with photon therapy, proton therapy reduces exposure of normal brain tissue in patients with craniopharyngioma, which might reduce cognitive deficits associated with radiotherapy. Because there are known physical differences between the two methods of radiotherapy, we aimed to estimate progression-free survival and overall survival distributions for paediatric and adolescent patients with craniopharyngioma treated with limited surgery and proton therapy, while monitoring for excessive CNS toxicity.

Methods: In this single-arm, phase 2 study, patients with craniopharyngioma at St Jude Children's Research Hospital (Memphis TN, USA) and University of Florida Health Proton Therapy Institute (Jacksonville, FL, USA) were recruited.

Factors that distinguish symptoms of most concern to parents from other symptoms of dying children.

In a previous study, we conducted telephone interviews with parents 6 to 10 months after their child's death from cancer, using open-ended questions to identify the type and frequency of cancer-related symptoms that most concerned them during the last week of their child's life. Because the parents identified many clinically striking symptoms (n=109) that were not of most concern to them, we conducted a secondary analysis of these interviews (48 mothers and four fathers of 52 patients) to identify descriptive factors associated with the parents' level of concern. Six descriptive factors were associated with symptoms of most concern and 10 factors with symptoms not of most concern.

Race does not influence do-not-resuscitate status or the number or timing of end-of-life care discussions at a pediatric oncology referral center.

Background: End-of-life care (EOLC) discussions and decisions are common in pediatric oncology. Interracial differences have been identified in adult EOLC preferences, but the relation of race to EOLC in pediatric oncology has not been reported. We assessed whether race (white, black) was associated with the frequency of do-not-resuscitate (DNR) orders, the number and timing of EOLC discussions, or the timing of EOLC decisions among patients treated at our institution who died.

Conducting end-of-life studies in pediatric oncology.

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 Health Utilities Index 3 invalidated when completed by nurses for pediatric oncology patients.

When health-related quality of life instruments developed for and validated in 1 respondent group are completed by a different respondent group, findings could be invalid. The purpose of this study was to summarize the instrument outcomes when a widely used health-related quality of life instrument (the Health Utilities Index 3 [HUI3]) created from a population-based strategy was completed by pediatric oncology nurses for their patients during cancer treatment. Fifty-four nurses completed the HUI3 a total of 261 times at 1 to 3 sequential data points (106, 94, and 61, respectively) for pediatric patients who were enrolled on a frontline therapeutic clinical trial for acute lymphoblastic leukemia.

Advances in defining, conceptualizing, and measuring quality of life in pediatric patients with cancer.

Purpose/objectives: To describe the notable advances in defining, conceptualizing, and measuring quality of life (QOL) in pediatric patients with cancer since the 1995 Oncology Nursing Society's State-of-the-Knowledge Conference on QOL.

Data Sources: Published research, clinical papers, and hospital policies.

Data Synthesis: QOL ratings from children and adolescents are being solicited increasingly in research and clinical assessments during treatment and survivorship using various methods but are not solicited from terminally ill patients; qualitatively induced models of pediatric cancer-related QOL now are being tested using quantitative methods.