{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,11]],"date-time":"2026-06-11T21:23:12Z","timestamp":1781212992904,"version":"3.54.1"},"reference-count":39,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2020,10,9]],"date-time":"2020-10-09T00:00:00Z","timestamp":1602201600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2021,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>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\u2010questionnaire <jats:italic>Distress thermometer for parents of a chronically ill child<\/jats:italic>, including questions on overall distress (score 0\u201310; \u22654 denoting \u201cclinical distress\u201d) and everyday problems (score 0\u201336). Data were compared to 1,134 control\u2010group\u2010parents of healthy children. Mothers reported significantly less overall distress (2, 1\u20134 vs. 3, 1\u20136; <jats:italic>p<\/jats:italic> =\u2009.049; <jats:italic>r<\/jats:italic> =\u2009\u2212.07) and total everyday problems (3, 0\u20136 vs. 4, 1\u20138; <jats:italic>p<\/jats:italic> =\u2009.03; <jats:italic>r<\/jats:italic> =\u2009\u2212.08) compared to control\u2010group\u2010mothers. Mothers without MFS reported significantly less overall distress compared to mothers with MFS, both of a child with MFS (1, 0\u20134 vs. 3.5, 2\u20135; <jats:italic>p<\/jats:italic> =\u2009.039; <jats:italic>r<\/jats:italic> =\u2009\u2212.17). No significant differences were found between the father\u2010groups, nor between the group of healthy parents of an affected child living together with an affected partner compared to control\u2010group\u2010parents. No differences in percentages of clinical distress were reported between mothers and control\u2010group\u2010mothers (33 vs. 42%); fathers and control\u2010group\u2010fathers (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\u2010third and may increase in case of acute medical complications. We advise monitoring distress in parents of a child with MFS to provide targeted support.<\/jats:p>","DOI":"10.1002\/ajmg.a.61906","type":"journal-article","created":{"date-parts":[[2020,10,9]],"date-time":"2020-10-09T12:40:16Z","timestamp":1602247216000},"page":"50-59","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Parenting a child with Marfan syndrome: Distress and everyday problems"],"prefix":"10.1002","volume":"185","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7597-3443","authenticated-orcid":false,"given":"Jessica","family":"Warnink\u2010Kavelaars","sequence":"first","affiliation":[{"name":"Department of Rehabilitation Medicine Amsterdam UMC, University of Amsterdam, Amsterdam Movement Sciences  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hedy A.","family":"van Oers","sequence":"additional","affiliation":[{"name":"Psychosocial Department Emma Children's Hospital, Amsterdam UMC, University of Amsterdam  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lotte","family":"Haverman","sequence":"additional","affiliation":[{"name":"Psychosocial Department Emma Children's Hospital, Amsterdam UMC, University of Amsterdam  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annemieke I.","family":"Buizer","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation Medicine Amsterdam UMC, University of Amsterdam, Amsterdam Movement Sciences  Amsterdam Netherlands"},{"name":"Department of Rehabilitation Medicine Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam Movement Sciences  Amsterdam Netherlands"},{"name":"Department of Pediatrics Emma Children's Hospital, Amsterdam UMC, University of Amsterdam  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mattijs W.","family":"Alsem","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation Medicine Amsterdam UMC, University of Amsterdam, Amsterdam Movement Sciences  Amsterdam Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Raoul H. 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