Explanipedia

Accelerating pediatric Hodgkin lymphoma research: the Hodgkin Lymphoma Data Collaboration (NODAL) Open

Kirk D. Wyatt, Suzi Birz, Sharon M. Castellino, Tara O. Henderson, John T. Lucas , et al. · 2024

Data commons have proven to be an indispensable avenue for advancing pediatric cancer research by serving as unified information technology platforms that, when coupled with data standards, facilitate data sharing. The Pediatric Cancer Dat…

Profiles of Symptom Suffering and Functioning in Children and Adolescents Receiving Chemotherapy Open

Lei Cheng, Bryce B. Reeve, Janice S. Withycombe, Shana Jacobs, Jennifer W. Mack , et al. · 2022

Background Some children and adolescents receiving chemotherapy experience few symptom-related adverse events, whereas others experience multiple adverse events. If oncology nurses could identify patients likely to have pronounced chemothe…

Comfort with Pharmacogenetic Testing Amongst Pediatric Oncology Providers and Their Patients Open

Catriona Mowbray, Joyce Turner, Jiaxiang Gai, Shana Jacobs · 2022

Background: Pharmacogenetic (PGx) testing, a component of personalized medicine, aims to ensure treatment efficacy while reducing side effects and symptoms. Before this testing becomes routine in the pediatric oncology population, nurses n…

Profile Comparison of Patient-Reported and Proxy-Reported Symptoms in Pediatric Patients With Cancer Receiving Chemotherapy Open

Meaghann S. Weaver, Shana Jacobs, Janice S. Withycombe, Jichuan Wang, Katie A. Greenzang , et al. · 2022

IMPORTANCE: The variability in individual symptom and adverse event reporting between pediatric patient-reports and proxy-reports is widely reported. However, the question of whether symptom profiles based on reports from children with can…

Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials Open

David R. Freyer, Li Lin, Jennifer W. Mack, Scott H. Maurer, Molly McFatrich , et al. · 2022

PURPOSE To examine concordance in symptomatic adverse event (AE) grading using the Common Terminology Criteria for Adverse Events (CTCAE 4.0) for clinicians and its patient-reported outcome (PRO) versions for children (Ped-PRO-CTCAE) and c…

Pharmacogenetic and Clinical Predictors of Ondansetron Failure in a Diverse Pediatric Oncology Population Open

Shana Jacobs, Jeffrey S. Dome, Jiaxiang Gai, Andrea M. Gross, Elena Postell , et al. · 2021

Purpose: Chemotherapy induced nausea and vomiting (CINV) is a frequently seen burdensome adverse event of cancer therapy. The 5-HT3 receptor antagonist ondansetron has improved the rates of CINV but, unfortunately, up to 30% of patients do…

Patients, caregivers, and clinicians differ in performance status ratings: Implications for pediatric cancer clinical trials Open

Scott H. Maurer, Pamela S. Hinds, Bryce B. Reeve, Jennifer W. Mack, Molly McFatrich , et al. · 2021

Background The Lansky Play‐Performance Scale (LPPS) is often used to determine a child's performance status for cancer clinical trial eligibility. Differences between clinician and caregiver LPPS ratings and their associations with child‐r…

Predictors of Hearing Aid Use Time in Children With Mild-to-Severe Hearing Loss Open

Elizabeth A. Walker, Meredith Spratford, Mary Pat Moeller, Jacob Oleson, Hua Ou , et al. · 2021

Purpose—This study investigated predictors of hearing aid (HA) use time for children with mild-severe hearing loss. Barriers to consistent HA use and reliability of parent report measures were also examined. Method—Participants included pa…

Validation of the caregiver Pediatric Patient‐Reported Outcomes Version of the Common Terminology Criteria for Adverse Events measure Open

Bryce B. Reeve, Molly McFatrich, Li Lin, Nicole Lucas, Jennifer W. Mack , et al. · 2020

Background Despite improvements in survival rates, cancer treatments have significant side effects that affect the quality of life of children and their families. When an ill child cannot self‐report symptoms (eg, he or she is too ill), ca…

Patterns of Symptoms and Functional Impairments in Children with Cancer Open

Tyler W. Buckner, Jichuan Wang, Darren A. DeWalt, Shana Jacobs, Bryce B. Reeve , et al. · 2020

BACKGROUND: Children with cancer experience multiple symptoms due to their disease and as a result of treatment. The purpose of this study was to demonstrate the feasibility and potential utility of using latent profile analysis (LPA), a t…

Subjective Toxicity Profiles of Children in Treatment for Cancer: A New Guide to Supportive Care? Open

Pamela S. Hinds, Meaghann S. Weaver, Janice S. Withycombe, Justin N. Baker, Shana Jacobs , et al. · 2020

A bilingual dietary intervention early in treatment is feasible and prevents weight gain in childhood acute lymphoblastic leukemia (ALL) Open

Michelle Walters, Catriona Mowbray, Tracey Jubelirer, Shana Jacobs, Kara M. Kelly , et al. · 2020

Background: Childhood acute lymphoblastic leukemia (ALL) is the most common pediatric malignancy. The onset of obesity during childhood ALL has been well established and is associated with inferior survival rates and increased treatment-re…

Weaver et al's Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272) Open

Meaghann S. Weaver, Lori Wiener, Shana Jacobs, Cynthia J. Bell, Vanessa Madrigal , et al. · 2020

Effect of a Daily Text Messaging and Directly Supervised Therapy Intervention on Oral Mercaptopurine Adherence in Children With Acute Lymphoblastic Leukemia Open

Smita Bhatia, Lindsey Hageman, Yanjun Chen, F. Lennie Wong, Elizabeth L. McQuaid , et al. · 2020

ClinicalTrials.gov Identifier: NCT01503632.

Agreement Between Child Self-report and Caregiver-Proxy Report for Symptoms and Functioning of Children Undergoing Cancer Treatment Open

Jennifer W. Mack, Molly McFatrich, Janice S. Withycombe, Scott H. Maurer, Shana Jacobs , et al. · 2020

This study found that caregivers consistently overestimated symptoms and underestimated mobility relative to the children themselves. These results suggest that elicitation of the child's own report should be pursued whenever possible.

Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative: Reeve et al. Open

Bryce B. Reeve, Molly McFatrich, Laura C. Pinheiro, Meaghann S. Weaver, Lillian Sung , et al. · 2020

Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child’s voice. The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (PRO-CTC…

Validity and Reliability of the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events Open

Bryce B. Reeve, Molly McFatrich, Jennifer W. Mack, Scott H. Maurer, Shana Jacobs , et al. · 2020

Background Patient-reported outcome (PRO) measurements linked to Common Terminology Criteria for Adverse Events (CTCAE) grading may improve symptom adverse event (AE) reporting in pediatric oncology trials. We evaluated construct validity,…

Expanding construct validity of established and new PROMIS Pediatric measures for children and adolescents receiving cancer treatment Open

Bryce B. Reeve, Molly McFatrich, Jennifer W. Mack, Laura C. Pinheiro, Shana Jacobs , et al. · 2020

Background The Patient‐Reported Outcomes Measurement Information System (PROMIS) Pediatric measures were designed to assess symptoms and functioning in children and adolescents. The study goal was to evaluate the validity and responsivenes…

Mapping child and adolescent self‐reported symptom data to clinician‐reported adverse event grading to improve pediatric oncology care and research Open

Molly McFatrich, Jennifer Brondon, Nicole Lucas, Pamela S. Hinds, Scott H. Maurer , et al. · 2019

Background Clinicians are the standard source for adverse event (AE) reporting in oncology trials, despite the subjective nature of symptomatic AEs. The authors designed a pediatric patient‐reported outcome (PRO) instrument for symptomatic…

Interdisciplinary Communication Open

Anne Watson, Meaghann S. Weaver, Shana Jacobs, Maureen E. Lyon · 2019

Advance care planning is being increasingly recognized as a component of quality in end-of-life care, but standardized documentation in the electronic health record has not yet been achieved, undermining interdisciplinary communication abo…

The Power of Massage in Children with Cancer—How Can We Do Effective Research? Open

Shana Jacobs, Catriona Mowbray · 2019

Children with cancer experience multiple troubling symptoms. Massage offers a safe, non-pharmacological approach to address these symptoms. Numerous studies of massage in children and adults with cancer have been performed, yet most are un…

Voices of children and adolescents on phase 1 or phase 2 cancer trials: A new trial endpoint? Open

Pamela S. Hinds, Jichuan Wang, Emily Stern, Catherine Fiona Macpherson, Claire Wharton , et al. · 2017

BACKGROUND Pediatric participants on phase 1 or phase 2 clinical trials for incurable cancer are at risk of experiencing toxicities (adverse events [AEs]) related to trial participation. Multiple AEs are subjective; thus, the real impact o…

Eliciting the child's voice in adverse event reporting in oncology trials: Cognitive interview findings from the Pediatric Patient‐Reported Outcomes version of the Common Terminology Criteria for Adverse Events initiative Open

Bryce B. Reeve, Molly McFatrich, Laura C. Pinheiro, Meaghann S. Weaver, Lillian Sung , et al. · 2016

Background Adverse event (AE) reporting in oncology trials is required, but current practice does not directly integrate the child's voice. The Pediatric Patient‐Reported Outcomes version of the Common Terminology Criteria for Adverse Even…

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