First name
Donna
Last name
Johnston

Title

Children's Oncology Group's 2013 blueprint for research: cancer control and supportive care.

Year of Publication

2013

Number of Pages

1027-30

Date Published

2013 Jun

ISSN Number

1545-5017

Abstract

<p>In cancer control research, the objective is to reduce overall morbidity and mortality by decreasing acute and delayed treatment-related toxicities in all children with cancer. To date, the Children's Oncology Group (COG) has focused on infection, neurocognition, quality of life (QoL), and nutrition/antiemetics. COG is conducting randomized controlled trials (RCTs) to determine prophylaxis strategies that will reduce infections in high-risk populations. Two RCTs are determining if modafinil or computerized cognitive training improve cognitive functioning in pediatric brain tumor patients. QoL is being assessed in acute leukemia patients. Improved supportive care outcomes will only occur when the most effective interventions are established.</p>

DOI

10.1002/pbc.24426

Alternate Title

Pediatr Blood Cancer

PMID

23255159

Title

Patient-Reported Outcome Coordinator Did Not Improve Quality of Life Assessment Response Rates: A Report from the Children's Oncology Group.

Year of Publication

2015

Number of Pages

e0125290

Date Published

2015

ISSN Number

1932-6203

Abstract

<p><strong>PURPOSE: </strong>Health related quality of life (HRQL) assessments during therapy for pediatric cancer provide valuable information to better understand the patient experience. Our objective was to determine the impact of a patient-reported outcome (PRO) coordinator on HRQL questionnaire completion rates during a pediatric acute myeloid leukemia (AML) trial.</p>

<p><strong>METHODS: </strong>AAML1031 is a multicenter Children's Oncology Group therapeutic trial for de novo AML with a secondary aim to assess HRQL of children and adolescents treated with chemotherapy and hematopoietic stem cell transplantation (HSCT). Parents/guardians are the primary respondents and four questionnaires are administered at eight time points. The questionnaires are the PedsQL 4.0 Generic Core Scales, PedsQL 3.0 Acute Cancer Module, PedsQL Multidimensional Fatigue Scale, and the Pediatric Inventory for Parents. To improve response rates, a central PRO coordinator was instituted and reminded sites about upcoming and delinquent questionnaires. The proportion of HRQL questionnaires completed were compared prior to, and following institution of the PRO coordinator. This analysis evaluated the first five assessment time points.</p>

<p><strong>RESULTS: </strong>There were231 families who consented to participate in the HRQL aim. Overall response rates for all questionnaires were 73-83%. At time point 1, within 14 days of chemotherapy initiation, post-PRO coordinator completion rates were significantly higher for three of four questionnaires. However, the effect was not sustained and at time point 4, one month following last chemotherapy or HSCT, completion rates were significantly lower post-PRO coordinator for all four questionnaires.</p>

<p><strong>CONCLUSION: </strong>Addition of a central PRO coordinator did not result in sustained improvement in HRQL questionnaire completion rates. Efforts to improve response rates must consider other strategies.</p>

DOI

10.1371/journal.pone.0125290

Alternate Title

PLoS ONE

PMID

25915772

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