Advances in medical, interventional and surgical treatment have increased average life expectancy of patients with congenital heart defects. As a result a new group of adult patients with congenital cardiac defects requires medical rehabilitation. Patients with Marfan syndrome (MFS) are a relevant group among these patients. So far, no reports on the effectiveness of specialized rehabilitation programmes for MFS patients exist. We implemented an inpatient 3-week rehabilitation program for MFS patients at the Muehlenberg-Clinic for rehabilitation and assessed the medical safety as well as the impact of the program on physical fitness and psychological wellbeing of participants by means of an observational pilot study. The comprehensive multidisciplinary program included medical, physiotherapeutic, psychological and social issues. Two groups including 8 and 10 individuals with verified MFS attended the programme. Medically adverse events that occurred during the rehabilitation were registered. Adverse events were defined as: any new cardiac arrhythmias such as atrial fibrillation, ventricular tachycardia, cardiac syncope or any complications located at the aorta. Psychological assessment was performed using Short Form-36 (SF-36), hospital anxiety and depression scale and other psychometric questionnaires. Medical examinations included assessment of maximum power in bicycle ergometry. All assessments were performed at the beginning and at the end of the rehabilitation. Psychometric assessments were repeated 1 year after the end of the programme for both groups, respectively. Patients were highly satisfied with the programme and improved in almost all psychological and physical fitness assessments. The pre-post-comparison resulted in significant positive changes for mental health (p < .001 for SF-36 Mental Health), fatigue (p < .05 for Fatigue Severity Scale), nociception (p < .05 for SF-36 Pain) and vitality (p < .05 for SF-36 Vitality). Physical fitness improved from admission to discharge (p < .001 for maximum power in bicycle ergometry, p < .05 for maximum nordic walking distance). Considerable improvements persisted through 1 year follow-up. Medical assessments excluded medical problems or adverse events caused by participation in the programme. In our study, inpatient rehabilitation was both safe and helpful for MFS patients. They benefited in terms of physical fitness, health related quality of life and in terms of psychological wellbeing. An evaluation of the efficacy of the programme in a controlled design as well as further conceptual improvements of our current program is desirable.

Background: Depression, generalized and cardiac anxiety, and posttraumatic stress disorder negatively affect disease severity, participation, and mortality in patients with cardiovascular disease. Psychological treatments within cardiac rehabilitation may improve the outcomes of these patients. We therefore developed a cognitive-behavioral rehabilitation program for patients with cardiovascular disease and mild or moderate mental illness or stress or exhaustion. In Germany, similar programs are well established in musculoskeletal rehabilitation and cancer rehabilitation. However, no randomized controlled trials have evaluated if such programs achieve better outcomes in patients with cardiovascular disease compared with standard cardiac rehabilitation. Methods: Our randomized controlled trial compares cognitive-behavioral cardiac rehabilitation with standard cardiac rehabilitation. The cognitive-behavioral program complements standard cardiac rehabilitation with additional psychological and exercise interventions. Both rehabilitation programs last for four weeks. We enroll 410 patients with cardiovascular disease and mild or moderate mental illness or stress or exhaustion aged 18 to 65 years. Half of the individuals are randomly assigned to cognitive-behavioral rehabilitation and the other half to standard cardiac rehabilitation. Our primary outcome is cardiac anxiety 12 months after the end of rehabilitation. Cardiac anxiety is assessed with the German 17-item version of the Cardiac Anxiety Questionnaire. Secondary outcomes cover outcomes assessed by clinical examinations and medical assessments and a range of patient-reported outcome measures. Discussion: This randomized controlled trial is designed to determine the effectiveness of cognitive-behavioral rehabilitation at decreasing cardiac anxiety in patients with cardiovascular disease and mild or moderate mental illness or stress or exhaustion. Trial registration: German Clinical Trials Register (DRKS00029295, June 21, 2022).

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.