Next Article in Journal
Gut–Liver Axis Derangement in Non-Alcoholic Fatty Liver Disease
Next Article in Special Issue
Risk and Resilience Factors Related to Parental Bereavement Following the Death of a Child with a Life-Limiting Condition
Previous Article in Journal
Middle Cerebral Artery Stroke as Amusement Park Injury: Case Report and Review of the Literature
Article Menu

Export Article

Open AccessBrief Report
Children 2017, 4(8), 65;

Trending Longitudinal Agreement between Parent and Child Perceptions of Quality of Life for Pediatric Palliative Care Patients

Children’s Hospital and Medical Center Omaha, Division of Palliative Care, 8200 Dodge Street, Omaha, NE 68114, USA
University of Nebraska Medical Center, Department of Biostatistics, Omaha, NE 68198, USA
Author to whom correspondence should be addressed.
Academic Editor: Stefan J. Friedrichsdorf
Received: 27 April 2017 / Revised: 1 July 2017 / Accepted: 28 July 2017 / Published: 1 August 2017
(This article belongs to the Special Issue Pediatric Palliative Care)
PDF [588 KB, uploaded 1 August 2017]


Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child’s quality of life across wellness domains. The 23-item PedsQL™ V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child. Findings were analyzed using Bland–Altman plots to compare observed differences to limits of agreement. This study revealed overall consistency between parent- and child-reported quality of life across domains. Physical health was noted to be in closest agreement. At the time of initial palliative care consult, children collectively scored their social quality of life higher than parental perception of the child’s social quality of life; whereas, emotional and cognitive quality of life domains were scored lower by children than by the parental report. At the one year survey time point, the physical, emotional, and social domains trended toward more positive patient perception than proxy perception with congruence between quality of life scores for the cognitive domain. Findings reveal the importance of eliciting a child report in addition to a parent report when measuring and longitudinally trending perceptions on quality of life. View Full-Text
Keywords: quality of life; pediatric palliative care; patient reported outcomes quality of life; pediatric palliative care; patient reported outcomes

Figure 1

This is an open access article distributed under the Creative Commons Attribution License which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited (CC BY 4.0).
Printed Edition Available!
A printed edition of this Special Issue is available here.

Share & Cite This Article

MDPI and ACS Style

Weaver, M.S.; Darnall, C.; Bace, S.; Vail, C.; MacFadyen, A.; Wichman, C. Trending Longitudinal Agreement between Parent and Child Perceptions of Quality of Life for Pediatric Palliative Care Patients. Children 2017, 4, 65.

Show more citation formats Show less citations formats

Note that from the first issue of 2016, MDPI journals use article numbers instead of page numbers. See further details here.

Related Articles

Article Metrics

Article Access Statistics



[Return to top]
Children EISSN 2227-9067 Published by MDPI AG, Basel, Switzerland RSS E-Mail Table of Contents Alert
Back to Top