Trending Longitudinal Agreement between Parent and Child Perceptions of Quality of Life for Pediatric Palliative Care Patients
Bibliographic Data
| ID | 15719872 |
|---|---|
| Authors | Meaghann S Weaver (0000-0003-0340-9533, Children's Hospital & Medical Center, corresponding author), Meaghann Weaver (Children’s Hospital and Medical Center Omaha, Division of Palliative Care, 8200 Dodge Street, Omaha, NE 68114, USA), Cheryl Darnall (Children's Hospital & Medical Center), Sue Bace (Children's Hospital & Medical Center), Catherine Vail (Children's Hospital & Medical Center), Andrew MacFadyen (0000-0002-0106-9013, Children's Hospital & Medical Center), Christopher Wichman (0000-0003-4642-1591, University of Nebraska Medical Center) |
| Year | 2017 |
| Volume | 4 |
| Issue | 8 |
| Pages | 65-65 |
| Publication date | 2017-08-01 |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children4080065 |
| PMID | 28763047 |
| OpenAlex | W2741157382 |
| Language | EN |
| Citations received | 5 |
| References cited | 15 |
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 PedsQLTM 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
Cognition · Palliative care · Perception · Proxy (statistics · Psychiatry · Quality of life (healthcare · Childhood Cancer Survivors' Quality of Life · Clinical Psychology · Family Support in Illness · Medicine · Nursing · Palliative Care and End-of-Life Issues · Psychology
Patient-reported outcome measures in palliative care
The Quality of Life of Children Facing Life-Limiting Conditions and That of Their Parents in Belgium
From the Child’s Word to Clinical Intervention
Listening to the Voice of the Hospitalized Child
Effect of Caregiver Depressive Symptoms on the Concordance Between Caregiver and Youth Assessment of Youth Physical Health
| Citations per year | 0.63 |
|---|---|
| Citation span | 2018 - 2026 (9) |
| Highly cited | No |