Living with Marfan syndrome I. Perceptions of the condition

K.F. Peters, R. Horne, F. Kong, C.A. Francomano, B.B. Biesecker

Research output: Contribution to journalArticle

Abstract

We present data from an exploratory study of 174 adults with Marfan syndrome regarding their cognitive perceptions of the condition as postulated by the self-regulatory model (Leventhal H, Benyamini Y, Brownlee S et al. In: Petrie KI, Weinman JA, eds. Perceptions of Health and Illness: Current Research and Applications. Amsterdam, The Netherlands: Harwood Academic, 1997: 19–45; Leventhal H, Nerenz DR, Steele DJ. In: Baum A, Taylor SE, Singer JE, eds. Handbook of Psychology and Health. Hillsdale, NJ: Lawrence Erlbaum Associates, 1984: 219–252). The vast majority of the respondents had adequate general knowledge about Marfan syndrome. Eighty-three percent of the respondents perceived Marfan syndrome as having had significant adverse consequences on their lives. Having striae, pain (sore joints), and depression were each independently correlated with this view. Fifty-eight percent of the respondents indicated that they felt they had low to moderate control over their condition, demonstrating variability. History of aortic dissection, pain (sore joints), and depressive symptoms were each negatively correlated with the view that Marfan syndrome is a curable/controllable condition. Moreover, approximately 28% view the condition as a lethal condition, whereas 67% view it as a serious condition. Forty-four percent of the cohort were found to have significant symptomatology of depression independent of beta- and Ca2+-channel blockade use. Respondents cited both advantages and disadvantages of being affected. Genetic counseling that addresses patients' perceptions of Marfan syndrome, and its associated pain, fatigue, and depressive symptoms, may enhance patient adaptation to the condition.
Original languageEnglish
Pages (from-to)273-282
Number of pages10
JournalClinical Genetics
Volume60
Issue number4
Publication statusPublished - Oct 2001

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Marfan Syndrome
Depression
Arthralgia
Behavioral Medicine
Genetic Counseling
Netherlands
Fatigue
Dissection
Pain
Surveys and Questionnaires
Health
Research

Keywords

  • body image
  • depression
  • dissection
  • genetic counseling
  • illness perception
  • Marfan syndrome

Cite this

Peters, K. F., Horne, R., Kong, F., Francomano, C. A., & Biesecker, B. B. (2001). Living with Marfan syndrome I. Perceptions of the condition. Clinical Genetics, 60(4), 273-282.
Peters, K.F. ; Horne, R. ; Kong, F. ; Francomano, C.A. ; Biesecker, B.B. / Living with Marfan syndrome I. Perceptions of the condition. In: Clinical Genetics. 2001 ; Vol. 60, No. 4. pp. 273-282.
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Peters, KF, Horne, R, Kong, F, Francomano, CA & Biesecker, BB 2001, 'Living with Marfan syndrome I. Perceptions of the condition', Clinical Genetics, vol. 60, no. 4, pp. 273-282.

Living with Marfan syndrome I. Perceptions of the condition. / Peters, K.F.; Horne, R.; Kong, F.; Francomano, C.A.; Biesecker, B.B.

In: Clinical Genetics, Vol. 60, No. 4, 10.2001, p. 273-282.

Research output: Contribution to journalArticle

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T1 - Living with Marfan syndrome I. Perceptions of the condition

AU - Peters, K.F.

AU - Horne, R.

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AU - Francomano, C.A.

AU - Biesecker, B.B.

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AB - We present data from an exploratory study of 174 adults with Marfan syndrome regarding their cognitive perceptions of the condition as postulated by the self-regulatory model (Leventhal H, Benyamini Y, Brownlee S et al. In: Petrie KI, Weinman JA, eds. Perceptions of Health and Illness: Current Research and Applications. Amsterdam, The Netherlands: Harwood Academic, 1997: 19–45; Leventhal H, Nerenz DR, Steele DJ. In: Baum A, Taylor SE, Singer JE, eds. Handbook of Psychology and Health. Hillsdale, NJ: Lawrence Erlbaum Associates, 1984: 219–252). The vast majority of the respondents had adequate general knowledge about Marfan syndrome. Eighty-three percent of the respondents perceived Marfan syndrome as having had significant adverse consequences on their lives. Having striae, pain (sore joints), and depression were each independently correlated with this view. Fifty-eight percent of the respondents indicated that they felt they had low to moderate control over their condition, demonstrating variability. History of aortic dissection, pain (sore joints), and depressive symptoms were each negatively correlated with the view that Marfan syndrome is a curable/controllable condition. Moreover, approximately 28% view the condition as a lethal condition, whereas 67% view it as a serious condition. Forty-four percent of the cohort were found to have significant symptomatology of depression independent of beta- and Ca2+-channel blockade use. Respondents cited both advantages and disadvantages of being affected. Genetic counseling that addresses patients' perceptions of Marfan syndrome, and its associated pain, fatigue, and depressive symptoms, may enhance patient adaptation to the condition.

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KW - dissection

KW - genetic counseling

KW - illness perception

KW - Marfan syndrome

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JO - Clinical Genetics

JF - Clinical Genetics

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Peters KF, Horne R, Kong F, Francomano CA, Biesecker BB. Living with Marfan syndrome I. Perceptions of the condition. Clinical Genetics. 2001 Oct;60(4):273-282.