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

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; caregivers; chronic pain; coping; psychosocial factors; quality of life.

Fig. 1

Selection process . A total of 522 articles were identified through database search and were screened. One hundred forty-seven were articles read and accessed for eligibility to be in the review. One hundred fourteen did not fit the scope or theme of this review. Forty-one articles were selected; of which four were review articles and 37 were peer-reviewed articles.

Fig. 2

Psychosocial factors associated with Marfan syndrome . There are several important psychosocial factors associated with Marfan syndrome. A multidisciplinary approach that target all these aspects may improve the quality of life in this population.