Biological Consequences of Psychological Distress in Caregivers of Children with Autism Spectrum Disorder and its Potent

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CANCER EPIDEMIOLOGY (M TERRY, SECTION EDITOR)

Biological Consequences of Psychological Distress in Caregivers of Children with Autism Spectrum Disorder and its Potential Relevance to Other Chronic Diseases Including Cancer L. Dijkstra-de Neijs 1 & P. J. M. Leenen 2 & J. P. Hays 3 & E. S. van der Valk 4 & R. Kraaij 5 & E. F. C. van Rossum 4 & W. A. Ester 1,6,7

# The Author(s) 2020

Abstract Purpose of Review Caregivers of children with a chronic illness are a neglected group in medical research and patient care, and are frequently confronted with chronic psychological distress. The biological consequences of this chronic distress are unclear but highly relevant, as these caregivers have a lifelong task in caring for their child. In this review, the authors specifically describe caregiver distress related to autism spectrum disorder (ASD), but the review may be relevant to other chronic diseases, including cancer. Recent Findings Epidemiological evidence illustrates the increased mortality risk in caregivers of children with ASD although some individual factors appear to diminish these risks. Biological studies demonstrate that caregiver distress can lead to dysregulation of the hypothalamic-pituitary-adrenal-axis, a pro-inflammatory state of the immune and central nervous system, and gut microbiome imbalance. Summary Caregivers of children with a chronic illness like ASD deserve more health-related attention with respect to their psychological and physical well-being. Such attention would benefit individual caregivers, as well as their children, as both are highly interconnected. Structural psychological and physical screening of caregivers can be considered. Keywords Autism spectrum disorders . Caregiver distress . Endocrine system of cortisol . Immune system . Microbiome

Introduction Distress is defined as a feeling of extreme worry, sadness, or pain [1], which can be the result of chronic and/or overwhelming stress. Stress is a biological and psychological adaptation to demanding circumstances, or the anticipation thereof. Chronic and/or overwhelming stress may shift from a

balanced mental and physical equilibrium, in which stress has an evolutionary benefit of adaptation, toward distress. Caring for a child with a chronic illness (including a child with autism spectrum disorder or ASD) generates an increased burden of stress on caregivers [2••] which can lead to caregiver distress. A certain amount of stress is common in all caregivers [2••], originating from everyday tasks of caring for a

This article is part of the Topical Collection on Cancer Epidemiology * W. A. Ester [email protected]

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Department of Internal Medicine, Division of Endocrinology, Erasmus MC, University Medical Center Rotterdam, Dr. Molewaterplein 40, 3015 GD Rotterdam, The Netherlands

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Sarr Expert Centre for Autism, Youz Child and Adolescent Psychiatry, Dynamostraat 18, 3083 AK Rotterdam, The Netherlands

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Department of Immunology, Erasmus MC, University Medical Center Rotterdam, Dr. Molewaterplein 40, 3015 GD Rotterdam, The Net