Few guidelines offer recommendations on how to assess and manage anxiety and distress in children with cancer: a content analysis.

PURPOSE: To (1) describe and compare, across all eligible guidelines, recommendations that address any aspect of clinical assessment or management of anxiety and distress experienced by children and adolescents undergoing cancer treatment or hematopoietic stem cell transplantation (HSCT), and (2) assess guideline characteristics that influence identified recommendations. METHODS: We searched five databases for relevant guidelines and conducted a grey literature search. Guidelines had to refer to children 0-18 years old who were undergoing cancer treatment or HSCT, describe any aspect of clinical assessment or management of symptoms of anxiety and distress, and be publicly accessible and published in English on or after 2000. RESULTS: We identified 118 guidelines on pediatric cancer of which 13 mentioned clinical assessment or management of anxiety and distress. Six contained ≥ 1 recommendation addressing assessments of symptoms of which only two recommended specific screening instruments. Ten contained ≥ 1 recommendation addressing interventions for symptoms, of which six described specific interventions such as distraction and medication. Psychologists and nurses were the most common panel members and three guideline panels included a patient advocate. Only two guidelines received overall quality ratings > 80.0%. CONCLUSION: We identified no guidelines that were specific to clinical assessment or management of anxiety and distress among children and adolescents undergoing cancer treatment or HSCT, and thus, clinicians lack evidence-informed guidance on how to manage these specific symptoms. Future research should establish high-quality guidelines that offer recommendations specific to clinical assessment and management of anxiety and distress in pediatric oncology and HSCT.

Severity, change over time, and risk factors of anxiety in children with cancer depend on anxiety instrument used.

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.

Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review.

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.

Evaluation of treatment-related mortality among paediatric cancer deaths: a population based analysis.

BACKGROUND: Objectives were to describe the proportion of deaths due to treatment-related mortality (TRM) and to identify risk factors and probable causes of TRM among paediatric cancer deaths in a population-based cohort. METHODS: We included children with cancer ⩽18 years diagnosed and treated in Ontario who died between January 2003 and December 2012. Deaths were identified using a provincial registry, the Pediatric Oncology Group of Ontario Networked Information System. Probable causes of TRM were described. RESULTS: Among the 964 deaths identified, 821 were included. The median age at diagnosis was 6.6 years (range 0-18.8) and 51.8% had at least one relapse. Of the deaths examined, TRM occurred in 217/821 (26.4%) while 604/821 (73.6%) were due to progressive cancer. Deaths from TRM did not change over time. Using multiple regression, younger age, leukaemia diagnosis and absence of relapse were independently positively associated with TRM. The most common probable causes of TRM were respiratory, infection and haemorrhage. CONCLUSIONS: TRM was responsible for 26.4% of deaths in paediatric cancer. Underlying diagnosis, younger age and absence of relapse were associated with TRM and causes of TRM differed by diagnosis group. Future work should evaluate TRM rate and risk factors among newly diagnosed cancer patients.

Instruments to measure anxiety in children, adolescents, and young adults with cancer: a systematic review.

PURPOSE: The primary objective was to describe anxiety measurement instruments used in children and adolescents with cancer or undergoing hematopoietic stem cell transplantation (HSCT) and summarize their content and psychometric properties. METHODS: We conducted searches of MEDLINE, Embase, PsycINFO, HAPI, and CINAHL. We included studies that used at least one instrument to measure anxiety quantitatively in children or adolescents with cancer or undergoing HSCT. Two authors independently identified studies and abstracted study demographics and instrument characteristics. RESULTS: Twenty-seven instruments, 14 multi-item and 13 single-item, were used between 78 studies. The most commonly used instrument was the State-Trait Anxiety Inventory in 46 studies. Three multi-item instruments (Children's Manifest Anxiety Scale-Mandarin version, PROMIS Pediatric Anxiety Short Form, and the State-Trait Anxiety Inventory) and two single-item instruments (Faces Pain Scale-Revised and 10-cm Visual Analogue Scale, both adapted for anxiety) were found to be reliable and valid in children with cancer. CONCLUSIONS: We identified 14 different multi-item and 13 different single-item anxiety measurement instruments that have been used in pediatric cancer or HSCT. Only three multi-item and two single-item instruments were identified as being reliable and valid among pediatric cancer or HSCT patients and would therefore be appropriate to measure anxiety in this population.

Experiences of Financial Stress and Supports in Caregivers During Pediatric Hospital Admission.

BACKGROUND AND OBJECTIVE: In Canada and the United States, ∼1 in 5 children live in poverty, contributing to poor health outcomes. Families with children with chronic illness may experience additional financial stress related to hospitalization. This study aimed to capture experiences of financial needs and supports among caregivers with a child admitted to a tertiary care pediatric hospital to inform hospital-based financial services to reduce financial stress in families. METHODS: We recruited caregivers of children admitted to the general inpatient ward of an academic pediatric center using purposive sampling with no exclusion criteria. Individual, semistructured, in-depth interviews with participants were conducted. Data collected included socio-demographics, financial needs, and experiences with financial supports. Interviews were audio-recorded, transcribed verbatim, coded, and analyzed on NVivo software using a modified-grounded theory approach and summative content analysis. RESULTS: Fifteen caregivers of diverse backgrounds were interviewed, including non-English speakers (n = 4). Three themes and associated subthemes (in parentheses) were identified: (1) financial stress expressed by participants (acute admission-related and chronic financial stress), (2) challenges associated with accessing and utilizing financial supports (caregiver factors, systemic hospital factors, and systemic government factors), and (3) ideas for financial services at the pediatric hospital (services that will provide acute- and chronic financial assistance including education about financial supports and benefits). CONCLUSIONS: Our study highlighted acute and chronic financial needs as well as challenges in accessing financial support. Participants were interested in the healthcare system gaining a comprehensive understanding of their financial circumstances and accessing financial services in a hospital setting.

Measurement of public health impacts of cannabis legalization in Canada to reflect policy maker priorities: A rapid scoping review of instruments and content domains.

BACKGROUND: We were engaged by policy stakeholders to undertake a scoping review of cannabis measurement instruments to inform the evaluation of cannabis legalization impacts. We identified instruments employed in population-based or clinical research to screen and assess cannabis use, including measurement properties. We also identified the content domains included in each instrument and gaps in the measurement of key priority areas as established by policy stakeholders. METHODS: We followed PRISMA and conducted searches on MEDLINE, PsycINFO, Web of Science, EMBASE, HAPI, Scopus and grey literature. We included publications from the past 15 years that reported the use of an instrument to measure cannabis use. Six study team members calibrated screening and data abstraction, independently identified records and abstracted data. RESULTS: Across 915 included publications, we identified 187 unique instruments covering seven content domains and 35 subdomains. The most identified instruments were the Composite International Diagnostic Interview, the Timeline Follow-Back and the National Epidemiologic Survey on Alcohol and Related Conditions (109/915; 91/915; 64/915). The Canadian Cannabis Survey addressed the most subdomains (22/35). Frequency of use, prevalence of use, and mental health impacts were the most addressed subdomains (110/187; 94/187; 67/187) and storage, growing cannabis, and second-hand exposure were the least addressed (1/187; 4/187; 6/187). CONCLUSION: This research identified instruments and domains critical to the assessment of public health impacts of cannabis legalization, which can facilitate the harmonization of measures to inform policy development. Future research should develop new instruments for less commonly-addressed constructs and thoroughly explore psychometric properties of existing instruments.

Measuring clinical utility in the context of genetic testing: a scoping review.

Standardized approaches to measuring clinical utility will enable more robust evaluations of genetic tests. To characterize how clinical utility has been measured, this scoping review examined outcomes used to operationalize this concept in the context of genetic testing, spanning relevant literature (2015-2017). The search strategy and analysis were guided by the Fryback and Thornbury hierarchical model of efficacy (FT Model). Through searches in Ovid MEDLINE, EMBASE and Web of Science, 194 publications were identified for inclusion. Two coders reviewed titles, abstracts, and full texts to determine eligibility. Results were analyzed using thematic and frequency analyses. This review generated a catalog of outcomes mapped to the efficacy domains of the FT Model. The degree of representation observed in each domain varied by the clinical purpose and clinical indication of genetic testing. Diagnostic accuracy (68%), technical (28.4%), and patient outcome (28.4%) efficacy studies were represented at the highest rate. Findings suggest that the FT Model is suitable for the genetics context however domain refinements may be warranted. More diverse clinical settings, robust study designs, and novel strategies for measuring clinical utility are needed.

A cost analysis comparing telepsychiatry to in-person psychiatric outreach and patient travel reimbursement in Northern Ontario communities.

INTRODUCTION: Residents of Northern Ontario have limited access to local psychiatric care. To address this, three program models exist: (1) telepsychiatry; (2) psychiatrists traveling to underserved areas; and (3) reimbursing patients for travel to a psychiatrist. Evidence shows that telepsychiatry has comparable outcomes to in-person consultations. The objective of this study was to determine the cost difference between programs. METHODS: A cost-minimization analysis estimating cost per visit from a public healthcare payer economic costing perspective was conducted. Data on fixed and variable costs were obtained. Evidence-based assumptions were made where relevant. Base-case scenarios and a break-even analysis were completed, as well as deterministic and probabilistic sensitivity analyses, to explore the effects of parameter variability on program costs. RESULTS: Costs per visit were lowest in telepsychiatry (CAD$360) followed by traveling physicians (CAD$558) and patient reimbursement (CAD$620). Among the 100,000 Monte Carlo simulations, results showed telepsychiatry was the least costly program in 71.2% of the simulations, while the reimbursement and outreach programs were least costly in 15.1% and 13.7% of simulations, respectively. The break-even analysis found telepsychiatry was the least costly program after an annual patient visit threshold of approximately 76 visits (compared to traveling psychiatrists) and 126 visits (compared to reimbursed patients). DISCUSSION: Our analyses support telepsychiatry as the least costly program. These results have important implications for program planning, including the prioritization of telepsychiatry, increased integration of telepsychiatry with other modalities of outreach psychiatry, and limiting use of the patient remuneration program to where medically necessary, to reduce overall cost.

Treatment-related mortality in newly diagnosed pediatric cancer: a population-based analysis.

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.

Quality of life outcomes following pediatric lung transplantation.

PURPOSE: Compared to other solid organs, survival after lung transplantation (LTx) is still poor. Discussions on survival benefits following LTx in children, however, have largely concentrated on medical outcome data. Little research describes quality of life (QoL) of pediatric LTx recipients, which is partly due to the small number of pediatric LTxs performed. Only two centers worldwide performed >10 pediatric LTxs in 2013, making data on QoL in this population difficult to obtain. The primary objective was to examine the impact of LTx on QoL of pediatric recipients. METHODS: LTx recipients aged 8-17 years and their parents were recruited from a Canadian pediatric transplant centre. Participants completed the PedsQL 4.0 Generic Core Scales, a validated health-related QoL patient-reported outcome measure for children and adolescents, pre-transplant and two times post-transplant. Pre-LTx QoL scores were compared with initial assessment scores post-LTx and changes in QoL over time were described. Correlations between self- and proxy-reports were also discussed. RESULTS: Ten pediatric LTx recipients (six male, mean age = 13.3 years) and their parents were enrolled. Assessments were completed pre-LTx (mean months = 4.8) and two times post-LTx (mean months 8.7 and 24.6, respectively). Pre- and post-transplant total scores differed significantly for both self- and proxy-report, which remained consistent at a second assessment post-transplant (P = 0.018 and 0.028, respectively). CONCLUSIONS: Findings highlight the importance of QoL outcomes when exploring LTx as a treatment option. Future research should explore long-term QoL outcomes post-LTx and examine standardized integration of patient-reported outcomes into clinical practice.