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J Pediatr Genet 2019; 08(03): 109-122
DOI: 10.1055/s-0039-1693663
Review Article
Georg Thieme Verlag KG Stuttgart · New York

A Review of Psychosocial Factors of Marfan Syndrome: Adolescents, Adults, Families, and Providers

Cory Nielsen
1   Biomedical Sciences Program, College of Graduate Studies, Midwestern University, Glendale, Arizona, United States
,
Ileana Ratiu
2   Speech-Language Pathology Program, College of Health Sciences, Midwestern University, Glendale, Arizona, United States
,
Mitra Esfandiarei
1   Biomedical Sciences Program, College of Graduate Studies, Midwestern University, Glendale, Arizona, United States
,
Angela Chen
3   Department of Pediatric Cardiology, Stanford University, Palo Alto, California, United States
,
Elif Seda Selamet Tierney 
3   Department of Pediatric Cardiology, Stanford University, Palo Alto, California, United States
› Author Affiliations
Further Information

Publication History

27 November 2018

12 June 2019

Publication Date:
25 July 2019 (online)

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Abstract

The purpose of this article was to review the current literature on psychosocial implications of Marfan syndrome (MFS) and its impact on adolescents, adults, their families and to provide important considerations for providers. Since the previous reviews in 2015, numerous studies have been published that are included in the current review. This literature review was conducted using PubMed, Medline, PsychINFO, ERIC, Web of Science, and Academic Search Premier databases and only articles that studied psychosocial factors that influence MFS patients as adolescents, adults, family members, or their interactions with providers were included in this review. Of the 522 articles reviewed, 41 were selected based on the inclusion and exclusion criteria. All articles were peer-reviewed. MFS has various implications that can impact one's life; studies have shown that MFS causes a negative impact on an individual's formative years, quality of life, reproductive decision-making, work participation, and satisfaction with life. Clinicians and multidisciplinary teams should be aware of these factors to provide support focusing on coping strategies for the patient and their family.

Keywords

Marfan syndrome - quality of life - chronic pain - psychosocial factors - coping - caregivers

Disclosures

The authors have no financial disclosures or relationship with industry.


 

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