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Health-related quality of life and mental health in parents of children with hemolytic uremic syndrome


Buder, Kathrin; Werner, Helene; Landolt, Markus A; Neuhaus, Thomas J; Laube, Guido F; Spartà, Giuseppina (2016). Health-related quality of life and mental health in parents of children with hemolytic uremic syndrome. Pediatric Nephrology, 31(6):923-932.

Abstract

BACKGROUND Little is known about health-related quality of life (HRQoL) and mental health of parents having children with a history of hemolytic uremic syndrome (HUS). METHODS This study included 63 mothers and 58 fathers of a cohort of 63 HUS-affected children. At assessment, the mean time since a child experienced an acute episode of HUS was 6.4 years. Parental HRQoL, mental health and posttraumatic stress disorder (PTSD) were assessed with standardized self-report questionnaires. Medical data were extracted from patients' hospital records. RESULTS The HRQoL and mental health of both the mothers and fathers were not impaired compared to normative data. However, a shorter time since a child's acute HUS episode was a significant predictor of lower HRQoL among the mothers, while no such effect was found among the fathers. Two fathers (3 %), but no mothers, met the criteria for a diagnosis of HUS-related full PTSD; one father (2 %) and four mothers (6 %) met the criteria for a diagnosis of HUS-related partial PTSD. CONCLUSIONS Our study shows that most parents of our study sample were doing well in terms of HRQoL and mental health, although a small number met the criteria for full or partial PTSD diagnosis due to their child's HUS. We therefore recommend that healthcare providers pay special attention to parents regarding PTSD symptoms during the clinical follow-up of a HUS-affected child since some parents may benefit from psychological support.

Abstract

BACKGROUND Little is known about health-related quality of life (HRQoL) and mental health of parents having children with a history of hemolytic uremic syndrome (HUS). METHODS This study included 63 mothers and 58 fathers of a cohort of 63 HUS-affected children. At assessment, the mean time since a child experienced an acute episode of HUS was 6.4 years. Parental HRQoL, mental health and posttraumatic stress disorder (PTSD) were assessed with standardized self-report questionnaires. Medical data were extracted from patients' hospital records. RESULTS The HRQoL and mental health of both the mothers and fathers were not impaired compared to normative data. However, a shorter time since a child's acute HUS episode was a significant predictor of lower HRQoL among the mothers, while no such effect was found among the fathers. Two fathers (3 %), but no mothers, met the criteria for a diagnosis of HUS-related full PTSD; one father (2 %) and four mothers (6 %) met the criteria for a diagnosis of HUS-related partial PTSD. CONCLUSIONS Our study shows that most parents of our study sample were doing well in terms of HRQoL and mental health, although a small number met the criteria for full or partial PTSD diagnosis due to their child's HUS. We therefore recommend that healthcare providers pay special attention to parents regarding PTSD symptoms during the clinical follow-up of a HUS-affected child since some parents may benefit from psychological support.

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Additional indexing

Item Type:Journal Article, refereed, original work
Communities & Collections:04 Faculty of Medicine > University Children's Hospital Zurich > Medical Clinic
06 Faculty of Arts > Institute of Psychology
Dewey Decimal Classification:610 Medicine & health
Language:English
Date:2016
Deposited On:05 Jan 2016 12:50
Last Modified:02 Feb 2018 09:41
Publisher:Springer
ISSN:0931-041X
OA Status:Closed
Publisher DOI:https://doi.org/10.1007/s00467-015-3294-0
Related URLs:http://www.zora.uzh.ch/125481/
PubMed ID:26701835

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