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Objective: The primary objective was to describe severity of anxiety among children and adolescents receiving chemotherapy for cancer or undergoing hematopoietic stem cell transplantation (HSCT). Secondary objectives were to describe how anxiety changes over time and determine factors associated with anxiety.Methods: Participants were aged 8 to 18 and either receiving chemotherapy for cancer or undergoing HSCT for any indication. Respondents self-reported three anxiety measurement instruments at chemotherapy cycle or HSCT conditioning start and 3 weeks later.Results: The proportion of participants with severe anxiety ranged from 10/77 (13.0%) to 22/77 (28.6%) depending on instrument used. Change over time also varied across instruments, with significant improvement observed with PedsQL (procedural) (P = 0.037) and PROMIS (P = 0.013). Factors associated with anxiety similarly varied by instrument. Older age was associated with more anxiety on the PedsQL (worry) (P = 0.036), and higher household income was associated with less anxiety on the MASC-10 (P = 0.028).Conclusions: While we found that a small proportion of patients met or exceeded thresholds for severe anxiety, we also noted that severity, change over time, and predictors of anxiety varied depending on instrument used. Future research should ensure that selected instruments measure the construct of interest and describe how anxiety is conceptualized in the study. [ABSTRACT FROM AUTHOR]

Abstract: Using a previously developed reliable and valid treatment‐related mortality (TRM) definition, our objective was to describe the proportion of children newly diagnosed with cancer experiencing TRM and to identify risk factors for TRM in a population‐based cohort. We included children with cancer <19 years diagnosed and treated in Ontario who were diagnosed between 2003 and 2012. Children with cancer were identified using data in a provincial registry. Cumulative incidence of TRM was calculated where progressive disease death was considered a competing event. Among the 5179 children included, 179 had TRM, 478 died of progressive disease, and 4522 were still alive. At 5 years, the cumulative incidence of TRM among the entire cohort was 3.9% (95% confidence interval (CI) 3.3–4.5%). When compared to brain tumor patients, leukemia and lymphoma patients had a significantly higher risk of TRM (hazard ratio (HR) 2.5, 95% CI: 1.6–4.0; P < 0.0001). Infants were at significantly higher risk of TRM across diagnostic groups. Other factors associated with higher risks of TRM were metastatic disease (P < 0.0001), diagnosis prior to 1 January 2008 (P = 0.001), hematopoietic stem cell transplantation (HSCT) (P < 0.0001), and relapse (P < 0.0001). The 5‐year cumulative incidence of TRM was 3.9% among newly diagnosed children with cancer. Infants were at higher risk of TRM across diagnostic groups. Other risk factors for TRM were leukemia or lymphoma, metastatic disease, earlier diagnosis year, HSCT, and relapse. Future work should further refine prognostic factors by specific cancer diagnosis to best understand when and how to intervene to improve outcomes. [ABSTRACT FROM AUTHOR]

Subjective evaluation of medical care and disease outcomes from patients' perspectives has become increasingly important. Patient‐reported outcome measures (PROMs) play a prominent role in engaging patients, capturing their experiences and improving patient care. This systematic review sought to identify PROMs that are used in the field of pediatric solid organ transplantation, with the aim to inform the implementation of PROMs into clinical practice for this population. A systematic review of English language, peer‐reviewed articles was performed on key health science databases to identify publications using PROMs in pediatric solid organ transplantation. The search yielded 3670 articles, with a final data set of 62 articles that included 47 different PROMs. The three most frequently used PROMs included the following: (a) PedsQL™ Generic Core Scales (n = 25); (b) Children's Depression Inventory (n = 6); and (c) Child Health Questionnaire (n = 6). Of the 47 PROMs, 42 were generic and five were disease‐specific; only six PROMS had a documented psychometric evaluation within a pediatric solid organ transplant population. This review outlines the attributes of the instruments (eg, domains captured), as well as the psychometric properties of those evaluated. PROMs are increasingly used in the field of pediatric transplantation; however, there are limited details in the current literature about their conceptual underpinnings and psychometric properties. This review highlights the need for additional psychometric evaluation of identified measures to establish the necessary foundation to inform the implementation of PROMs into clinical care for pediatric solid organ transplant patients. [ABSTRACT FROM AUTHOR]