Trending Longitudinal Agreement Between Parent And Child Perceptions Of Quality Of Life For Pediatric Palliative Care Patients

Title

Trending Longitudinal Agreement Between Parent And Child Perceptions Of Quality Of Life For Pediatric Palliative Care Patients

Creator

Weaver M; Darnall C; Bace S; Vail C; Macfadyen A; Wichman C

Identifier

10.3390/children4080065

Publisher

Children (basel)

Date

2017

Subject

Patient Reported Outcomes; Pediatric Palliative Care; Quality Of Life

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

October 2017 List

Notes

Weaver, Meaghann S
Darnall, Cheryl
Bace, Sue
Vail, Catherine
MacFadyen, Andrew
Wichman, Christopher
Journal Article
Switzerland
Children (Basel). 2017 Aug 1;4(8). pii: E65. doi: 10.3390/children4080065.

Citation

Weaver M; 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,” Pediatric Palliative Care Library, accessed January 16, 2022, https://pedpalascnetlibrary.omeka.net/items/show/10799.

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