Centre for Applied Research on Social Sciences and Law

Parenting a child with Marfan syndrome

distress and everyday problems


Marfan syndrome (MFS) is a multisystemic, autosomal dominant connective tissue disorder that occurs de novo in 25%. In many families, parent and child(ren) are affected, which may increase distress in parents. To assess distress, 42 mothers (29% MFS) and 25 fathers (60% MFS) of 43 affected children, completed the validated screening‐questionnaire Distress thermometer for parents of a chronically ill child, including questions on overall distress (score 0–10; ≥4 denoting “clinical distress”) and everyday problems (score 0–36). Data were compared to 1,134 control‐group‐parents of healthy children. Mothers reported significantly less overall distress (2, 1–4 vs. 3, 1–6; p = .049; r = −.07) and total everyday problems (3, 0–6 vs. 4, 1–8; p = .03; r = −.08) compared to control‐group‐mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0–4 vs. 3.5, 2–5; p = .039; r = −.17). No significant differences were found between the father‐groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control‐group‐parents. No differences in percentages of clinical distress were reported between mothers and control‐group‐mothers (33 vs. 42%); fathers and control‐group‐fathers (28 vs. 32%); nor between the other groups. Distress was not associated with the children's MFS characteristics. Concluding, parents of a child with MFS did not show more clinical distress compared to parents of healthy children. However, clinical distress was reported in approximately one‐third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.

Reference Warnink-Kavelaars, J., van Oers, H. A., Haverman, L., Buizer, A. I., Alsem, M. W., Engelbert, R. H. H., & Menke, L. A. (2021). Parenting a child with Marfan syndrome: distress and everyday problems. American Journal of Medical Genetics - Part A, 185(1), 50-59. https://doi.org/10.1002/ajmg.a.61906
Published by  Urban Vitality 1 January 2021

Publication date

Jan 2021


Jessica Warnink-Kavelaars
Hedy A. van Oers
Lotte Haverman
Annemieke I. Buizer
Mattijs W. Alsem
Leonie A. Menke


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