Body Image in Patients with Marfan Syndrome

Abstract

This study aimed to assess body image impairments of individuals with Marfan syndrome and to determine to what extent psychological, physical, and sociodemographic factors influence body image. We assessed the physical fitness and psychosocial health of 42 patients with Marfan syndrome at the beginning of an inpatient rehabilitation program. All participants filled out a body image questionnaire consisting of two scales: (1) Negative Body Evaluation and (2) Vital Body Dynamics. We compared body image data of the study sample with the German representative norming sample and carried out two separate regression analyses in order to determine which variables were associated with the two dimensions of patients’ body image. Body image of individuals with Marfan syndrome appeared to be significantly impaired, with high percentile ranks for Negative Body Evaluation (women = 88, men = 91) and low percentile ranks for Vital Body Dynamics (women = 11, men = 4). Vital Body Dynamics was predicted by age (p = 0.016) and by depression (p < 0.001), and Negative Body Evaluation was predicted by anxiety (p = 0.001). Body image in individuals with Marfan syndrome is not primarily determined by objective measures of fitness or by objective cardiac impairment but by psychological variables like depression and anxiety and by age. This finding can inform treatment and rehabilitation concepts. Accepting Marfan syndrome, including the acceptance of being visually different, may not only demand medical treatment and physical rehabilitation but also psychological treatment for depression and anxiety.

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

“…Consequently, most patients are closely monitored, with serial cardiovascular assessments from early childhood (2)(3)(4)(5). Additionally, patients with MFS often have to cope with skeletal or ocular abnormalities leading to a characteristic appearance, which is not only subjectively perceived by themselves, but is also visible to others (6,7). Recent studies have indicated that the combination of physiological and psychological symptoms may lead to a decreased quality of life (QOL) in individuals with MFS (3).…”

Discussing psychological and psychotherapeutic support for patients with Marfan syndrome (MFS) and their family: an example of a structured program in Italy

“…MFS patients often report having a significantly impaired body image, predicted by depression and anxiety (Hansen et al, 2020 ). When comparing operated and non-operated subgroups of MSF patients, it emerged that the operated group reported more alcohol consumption while the non-operated group had more sleep disturbances.…”