Abstract
PurposeHealth 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.MethodsAAML1031 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.ResultsThere 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.ConclusionAddition 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.
Highlights
Health related quality of life (HRQL) assessments during therapy for pediatric cancer provide valuable information to better understand the patient experience
AAML1031 is a multicenter Children’s Oncology Group therapeutic trial for de novo acute myeloid leukemia (AML) with a secondary aim to assess HRQL of children and adolescents treated with chemotherapy and hematopoietic stem cell transplantation (HSCT)
Addition of a central patient-reported outcome (PRO) coordinator did not result in sustained improvement in HRQL questionnaire completion rates
Summary
Health related quality of life (HRQL) assessments during therapy for pediatric cancer provide valuable information to better understand the patient experience. They provide information that allows clinicians to identify if, when, and how interventions intended to improve HRQL should be instituted [1,2]. When HRQL is measured on different treatments regimens, it provides insight into how the regimens differ from the patient’s and family’s perspective. This information can subsequently be used to help clinicians and families when choosing a treatment strategy [2,3,4]. This study was approved by the Institutional Review Board at all participating institutions and all parents provided written informed consent to participate in the study and for their children’s data to be used for research purposes (see S1 Table for a list of participating institutions)
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