The effects of child anxiety and depression on concordance between parent-proxy and self-reported health-related quality of life for pediatric liver transplant patients
Amy Grant
Maritime Intestinal Research Alliance, IWK Health Centre, Halifax, NS, Canada
Search for more papers by this authorVicky L. Ng
Division of Pediatric Gastroenterology, Hepatology and Nutrition, Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada
Search for more papers by this authorDavid Nicholas
Social Work, University of Calgary, Calgary, AB, Canada
Search for more papers by this authorNada Yazigi
MedStar Georgetown Transplant Institute, Washington, DC, USA
Search for more papers by this authorLooi C. Ee
Gastroenterology, Hepatology and Liver Transplant, Queensland Children’s Hospital, Brisbane, QLD, Australia
Search for more papers by this authorMichael O. Stormon
The Children's Hospital at Westmead, Sydney, NSW, Australia
Search for more papers by this authorSusan M. Gilmour
Stollery Children's Hospital, Edmonton, AB, Canada
Search for more papers by this authorRichard A. Schreiber
British Columbia Children's Hospital, Vancouver, BC, Canada
Search for more papers by this authorErin Carmody
Maritime Intestinal Research Alliance, IWK Health Centre, Halifax, NS, Canada
Search for more papers by this authorCorresponding Author
Anthony R. Otley
Maritime Intestinal Research Alliance, Department of Pediatrics, IWK Health Centre, Dalhousie University, Halifax, NS, Canada
Correspondence
Anthony R. Otley, Maritime Intestinal Research Alliance, Department of Pediatrics, IWK Health Centre, Dalhousie University, Halifax, NS, Canada.
Email: [email protected]
Search for more papers by this authorPeLTQL Study Group
Search for more papers by this authorAmy Grant
Maritime Intestinal Research Alliance, IWK Health Centre, Halifax, NS, Canada
Search for more papers by this authorVicky L. Ng
Division of Pediatric Gastroenterology, Hepatology and Nutrition, Transplant and Regenerative Medicine Centre, The Hospital for Sick Children, University of Toronto, Toronto, ON, Canada
Search for more papers by this authorDavid Nicholas
Social Work, University of Calgary, Calgary, AB, Canada
Search for more papers by this authorNada Yazigi
MedStar Georgetown Transplant Institute, Washington, DC, USA
Search for more papers by this authorLooi C. Ee
Gastroenterology, Hepatology and Liver Transplant, Queensland Children’s Hospital, Brisbane, QLD, Australia
Search for more papers by this authorMichael O. Stormon
The Children's Hospital at Westmead, Sydney, NSW, Australia
Search for more papers by this authorSusan M. Gilmour
Stollery Children's Hospital, Edmonton, AB, Canada
Search for more papers by this authorRichard A. Schreiber
British Columbia Children's Hospital, Vancouver, BC, Canada
Search for more papers by this authorErin Carmody
Maritime Intestinal Research Alliance, IWK Health Centre, Halifax, NS, Canada
Search for more papers by this authorCorresponding Author
Anthony R. Otley
Maritime Intestinal Research Alliance, Department of Pediatrics, IWK Health Centre, Dalhousie University, Halifax, NS, Canada
Correspondence
Anthony R. Otley, Maritime Intestinal Research Alliance, Department of Pediatrics, IWK Health Centre, Dalhousie University, Halifax, NS, Canada.
Email: [email protected]
Search for more papers by this authorPeLTQL Study Group
Search for more papers by this authorFunding information
Creation of the PeLTQL measure was supported by the Hospital for Sick Children (Pediatric Consultants’ Creative Professional Activity grant 2004–2005), IWK Health Centre (Category A grant 2004–2005), and the Canadian Institutes of Health Research (Operating grant FRN-77626, 2005–2009). The current study had no designated funding support
Abstract
Background
HRQOL is a key outcome following pediatric LT. Parent-proxy reports may substitute for patients unable to report their own HRQOL. This study compared parent-proxy and self-reported HRQOL in children who have undergone LT.
Methods
Pediatric LT recipients between the ages of 8 and 18 years, and a parent, completed self and proxy versions of the PeLTQL questionnaire, PedsQL Generic and Transplant modules, and standardized measures of depression and anxiety.
Results
Data from 129 parent–patient dyads were included. Median parent age was 44 years, and most (89%) were mothers. Median patient age was 2.5 years at LT and 13.6 years at the time of study participation. Parents had significantly lower scores than patients on PedsQL total generic (70.8 ± 18.5 and 74.3 ± 19.0, p = .01), PeLTQL coping and adjustment (63.0 ± 15.6 and 67.3 ± 16.2, p < .01), and social-emotional (66.3 ± 14.9 and 71.9 ± 15.6, p < .001) domains. Higher patient anxiety and depression were related to larger absolute differences between parent-proxy and self-reported scores on all HRQOL measures (all p < .05). In this disparity, parents reported higher HRQOL scores than their child as self-reported anxiety and depression scores increased.
Conclusions
Differences in concordance between parent-proxy and self-reported HRQOL scores can be more prominent when children have more symptoms of anxiety and depression. Children's mental health symptoms should be queried, if feasible, when interpreting differences in parent and child reports of HRQOL.
CONFLICT OF INTEREST
The authors of this manuscript have no relevant conflicts of interest to declare.
Open Research
DATA AVAILABILITY STATEMENT
The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.
Supporting Information
| Filename | Description |
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| petr14072-sup-0001-FigS1.pdfPDF document, 108.4 KB | Fig S1 |
Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.
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