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

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An Erratum to this article was published on 05 April 2016

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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Acknowledgments

We thank all the parents who participated in this study. The study was supported by the Swiss Society of Nephrology and the “Kinder für Kinder” foundation.

Compliance with ethical standards

The study was approved by the Ethics Committee of the Canton of Zurich and registered at ClinicalTrials.gov (NCT 01666548). Written informed consent was received from parents.

Funding sources

The study was supported by the Swiss Society of Nephrology and by the “Kinder für Kinder” foundation.

Conflict of interest

The authors declare no conflicts of interest.

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Correspondence to Giuseppina Spartà.

Additional information

Kathrin Buder and Helene Werner contributed equally to this work.

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Buder, K., Werner, H., Landolt, M.A. et al. Health-related quality of life and mental health in parents of children with hemolytic uremic syndrome. Pediatr Nephrol 31, 923–932 (2016). https://doi.org/10.1007/s00467-015-3294-0

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  • DOI: https://doi.org/10.1007/s00467-015-3294-0

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