Parent-child Agreement on Health Related Quality of Life in Children With Functional Constipation in Primary Care

Objective: Functional constipation (FC) has a major impact on the health related quality of life (HRQoL) of children. The aim of this study was to evaluate parent-child agreement on HRQoL in children (8 to 17 years) with FC in primary care. Methods: Children diagnosed with FC by their clinician were eligible. HRQoL was measured with the Defecation Disorder List (DDL, score 0–100), and the EuroQol™-5-Dimension-Youth Visual Analogue Scale (EQ-5D-Y-VAS, scale 0–100). Parent-child agreement was examined with discrepancy scores, Intraclass Correlation Coefficients (ICC) and Bland-Altman plots. Results: Fifty-six children, median age of 10 years (IQR 8–12) and their parents were included. Parent-child agreement at a group level was good, with an ICC of 0.80 (95%-CI 0.67–0.88) for the DDL, and 0.78 (95%-CI 0.65–0.87) for the EQ-5D-Y-VAS. Mean discrepancy scores for the DDL and EQ-5D-Y-VAS were small: −2.6 and −2.9, implying that parents were slightly more positive about the HRQoL than their children. Bland-Altman plots showed considerable discordance between individual parent-child pairs. Limits of agreement were −19.7 and 14.6 for the DDL and −27.6 and 21.8 for the EQ-5D-Y-VAS. Conclusion: There is good parent-child agreement on HRQoL in children with FC at group level. However, a substantial number of parent-child pairs differed considerably on their rating of the HRQoL of the child. Therefore, we recommend clinicians, if they want to have an impression of the impact of the FC on the HRQoL of the child, to ask both the child and the parent(s). Trial identification number: Netherlands trial register number 4797, https://ift.tt/2nqp2KM. This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. https://ift.tt/OBJ4xP Address correspondence and reprint requests to Janny H. Dekker, MD, PhD, Department of General practice and Elderly care medicine, PO Box 196, 9700 AD Groningen, The Netherlands (E-mail: j.h.dekker@umcg.nl); Jojanneke J.G.T. van Summeren, MSC, University of Groningen, University Medical Center Groningen, Groningen, Netherlands (e-mail: j.j.g.t.van.summeren@umcg.nl). Received 23 March, 2018 Accepted 24 July, 2018 Conflict of interest: The authors have no conflicts of interest disclose. Funding source: All phases of this study were supported by the Netherlands organization for Health Research and Development (ZonMw), project number 837001409. Financial disclosure: The funding organization had no role in the design or conduct of the study; the collection, management, analysis, or interpretation of the data; the preparation, review, or approval of the manuscript; or the decision to submit the manuscript for publication. © 2018 by European Society for Pediatric Gastroenterology, Hepatology, and Nutrition and North American Society for Pediatric Gastroenterology,

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