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Caregiving Demands and Well-being in Parents of Children Treated With Outpatient or Inpatient Methotrexate Infusion: A Report From the Children’s Oncology Group

Kelly, Katherine P. PhD, RN*; Wells, Diane K. MSN, RN; Chen, Lu PhD; Reeves, Elaine CCRA§; Mass, Ellen MSN, RN; Camitta, Bruce MD; Hinds, Pamela S. PhD RN FAAN*

Journal of Pediatric Hematology/Oncology: August 2014 - Volume 36 - Issue 6 - p 495–500
doi: 10.1097/MPH.0b013e31828b0947
Clinical and Laboratory Observations

Parent well-being is affected by their child’s oncology treatment regimen and associated caregiving demand. Parental caregiving demands and well-being were evaluated in 161 parents from 47 sites whose child was randomized to receive either a 4-hour (outpatient) or 24-hour (inpatient) methotrexate infusion during consolidation treatment for acute lymphoblastic leukemia. A majority of patients randomized to the 4-hour infusion (66.3%) received the infusion as an inpatient. The most frequently reported reasons for this were lack of an adequate outpatient facility (53.6%) and physician preference (25.0%). There were no differences between caregiving demand and well-being total scores by either randomized or actual infusion location with one exception: well-being scale fatigue scores were significantly greater (P=0.001) for parents whose child received the outpatient infusion. Mean total well-being scores for both the 24-hour arm (µ=42.6; SD 16.2) and the 4-hour arm (µ=40.6; SD 14.1) were elevated compared to healthy control populations. Additional research is needed to characterize impact of treatment setting on parental caregiving demand and well-being during their child’s treatment for acute lymphoblastic leukemia. Investigators examining impact of treatment location in randomized clinical trials need to control for institutional variability in outpatient care delivery resources.

*Children’s National Medical Center, George Washington University, Washington, DC

University of Maryland Medical Center, Baltimore, MD

Children’s Oncology Group, Arcadia, CA

§University of Oklahoma Health Sciences Center, Oklahoma City, OK

Hackensack University Medical Center, Hackensack, NJ

Midwest Children’s Cancer Center, Milwaukee, WI

Supported by the Chair’s Grant U10 CA98543-08 Statistics, the Data Center Grant U10 CA98413-08, and the CCOP Research Base Grant U10 CA095861 of the Children’s Oncology Group from the National Cancer Institute, National Institutes of Health, Bethesda, MD. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NCI or the NIH. A complete listing of grant support for research conducted by the Children’s Cancer Group (CCG) and the Pediatric Oncology Group (POG) before initiation of the Children’s Oncology Group (COG) grant in 2003 is available online at:

The authors declare no conflict of interest.

Reprints: Katherine P. Kelly, PhD, RN, Children’s National Medical Center, George Washington University, 111 Michigan Ave NW, Washington, DC 20010 (e-mail:

Received November 19, 2012

Accepted January 31, 2013

© 2014 by Lippincott Williams & Wilkins.