Literature DB >> 31406616

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

Cory Nielsen1, Ileana Ratiu2, Mitra Esfandiarei1, Angela Chen3, Elif Seda Selamet Tierney3.   

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.

Entities:  

Keywords:  Marfan syndrome; caregivers; chronic pain; coping; psychosocial factors; quality of life

Year:  2019        PMID: 31406616      PMCID: PMC6688882          DOI: 10.1055/s-0039-1693663

Source DB:  PubMed          Journal:  J Pediatr Genet        ISSN: 2146-460X


  83 in total

1.  Work and employment for people with psychiatric disabilities.

Authors:  Jed Boardman; Bob Grove; Rachel Perkins; Geoff Shepherd
Journal:  Br J Psychiatry       Date:  2003-06       Impact factor: 9.319

2.  Psychosocial determinants of health in social epidemiology.

Authors:  Pekka Martikainen; Mel Bartley; Eero Lahelma
Journal:  Int J Epidemiol       Date:  2002-12       Impact factor: 7.196

3.  Living with Marfan syndrome III. Quality of life and reproductive planning.

Authors:  K F Peters; F Kong; M Hanslo; B B Biesecker
Journal:  Clin Genet       Date:  2002-08       Impact factor: 4.438

Review 4.  Synthesising qualitative and quantitative evidence: a review of possible methods.

Authors:  Mary Dixon-Woods; Shona Agarwal; David Jones; Bridget Young; Alex Sutton
Journal:  J Health Serv Res Policy       Date:  2005-01

5.  Evaluation for sleep apnea in patients with Ehlers-Danlos syndrome and Marfan: a questionnaire study.

Authors:  J Verbraecken; A Declerck; P Van de Heyning; W De Backer; E F Wouters
Journal:  Clin Genet       Date:  2001-11       Impact factor: 4.438

6.  Living with Marfan syndrome I. Perceptions of the condition.

Authors:  K F Peters; F Kong; R Horne; C A Francomano; B B Biesecker
Journal:  Clin Genet       Date:  2001-10       Impact factor: 4.438

7.  Living with Marfan syndrome II. Medication adherence and physical activity modification.

Authors:  K F Peters; R Horne; F Kong; C A Francomano; B B Biesecker
Journal:  Clin Genet       Date:  2001-10       Impact factor: 4.438

8.  Characterization of the symptoms associated with dural ectasia in the Marfan patient.

Authors:  Jared R H Foran; Reed E Pyeritz; Harry C Dietz; Paul D Sponseller
Journal:  Am J Med Genet A       Date:  2005-04-01       Impact factor: 2.802

9.  Prospective relations between social support and depression: differential direction of effects for parent and peer support?

Authors:  Eric Stice; Jennifer Ragan; Patrick Randall
Journal:  J Abnorm Psychol       Date:  2004-02

10.  Aortic dissection in children and young adults: diagnosis, patients at risk, and outcomes.

Authors:  Eli Zalzstein; Robert Hamilton; Nili Zucker; Samuel Diamant; Gary Webb
Journal:  Cardiol Young       Date:  2003-08       Impact factor: 1.093

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  7 in total

1.  Health-Related Quality of Life of Patients with Marfan Syndrome-Polish Study.

Authors:  Agnieszka Trawicka; Aleksandra Lewandowska-Walter; Mikołaj Majkowicz; Robert Sabiniewicz; Lidia Woźniak-Mielczarek
Journal:  Int J Environ Res Public Health       Date:  2022-06-02       Impact factor: 4.614

2.  Quality of life in patients with Marfan syndrome: a cross-sectional study of 102 adult patients.

Authors:  Caroline Andonian; Sebastian Freilinger; Stefan Achenbach; Peter Ewert; Ulrike Gundlach; Harald Kaemmerer; Nicole Nagdyman; Rhoia Clara Neidenbach; Lars Pieper; Jörg Schelling; Michael Weyand; Jürgen Beckmann
Journal:  Cardiovasc Diagn Ther       Date:  2021-04

Review 3.  Marfan syndrome.

Authors:  Dianna M Milewicz; Alan C Braverman; Julie De Backer; Shaine A Morris; Catherine Boileau; Irene H Maumenee; Guillaume Jondeau; Arturo Evangelista; Reed E Pyeritz
Journal:  Nat Rev Dis Primers       Date:  2021-09-02       Impact factor: 65.038

4.  Parenting a child with Marfan syndrome: Distress and everyday problems.

Authors:  Jessica Warnink-Kavelaars; Hedy A van Oers; Lotte Haverman; Annemieke I Buizer; Mattijs W Alsem; Raoul H H Engelbert; Leonie A Menke
Journal:  Am J Med Genet A       Date:  2020-10-09       Impact factor: 2.802

5.  Health-related quality of life in Marfan syndrome: a 10-year follow-up.

Authors:  Thy Thy Vanem; Svend Rand-Hendriksen; Cathrine Brunborg; Odd Ragnar Geiran; Cecilie Røe
Journal:  Health Qual Life Outcomes       Date:  2020-12-01       Impact factor: 3.186

6.  Is SF-12 a valid and reliable measurement of health-related quality of life among adults with Marfan syndrome? A confirmatory study.

Authors:  Nathasha Udugampolage; Rosario Caruso; Mariangela Panetta; Edward Callus; Federica Dellafiore; Arianna Magon; Susan Marelli; Alessandro Pini
Journal:  PLoS One       Date:  2021-06-09       Impact factor: 3.240

7.  Heritable connective tissue disorders in childhood: Decreased health-related quality of life and mental health.

Authors:  Jessica Warnink-Kavelaars; Lisanne E de Koning; Lies Rombaut; Leonie A Menke; Mattijs W Alsem; Hedy A van Oers; Annemieke I Buizer; Raoul H H Engelbert; Jaap Oosterlaan
Journal:  Am J Med Genet A       Date:  2022-04-08       Impact factor: 2.578

  7 in total

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