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Published on: June 14, 2016
Psychological factors affecting Marfan syndrome patients with or without cardiac surgery
Miklós Pólos1, Kálmán Benke2, Bence Ágg3
1Heart and Vascular Center, Semmelweis University, Budapest, Hungary; Hungarian Marfan Foundation, Budapest, Hungary. miklospolos@gmail.com.
Background:
Marfan syndrome (MFS) is a systemic connective tissue disorder belonging to a group of rare diseases. Several psychologically distressing factors can challenge life for MFS patients. The aim of the present study was, therefore, to assess the psychological and psychosocial aspects of MFS with the goal of identifying a means of improving disease management for patients.
Methods:
A total of 66 adult patients with MFS were enrolled into the study prospectively and were divided into operated (OP) and non-operated (NOP) subgroups. Multiple questionnaire tests were used to determine the mental and physical state of our patients. Demographic and surgical data were collected. The results of the tests were also compared to the Hungarostudy (HS) population (representing the average Hungarian population) by using a propensity-matched control.
Results:
OP group scores yielded more alcohol consumption (P<0.001), while NOP group showed more sleep disturbances. Scores on the MMSE, BECK, STAI and STAI-T tests showed no significant difference comparing the OP and NOP groups. MFS patients appear to have moderate pain-related disability and mild depressive symptoms and sleep disturbances (P<0.05) compared to the HS group. On 10-point scale, MFS patients were more satisfied with their lives (P<0.001) and considered themselves happier (P<0.001) than the HS population; however, they also spent more days on sick leave and in hospital over the past year. The HS group yielded a higher overall percentage of current smokers and pack-per-year consumption than the MFS patients overall (P=0.003 and P<0.001 respectively).
Conclusions:
Marfan patients' psychosocial life differs in many ways (including sleep disturbances, healthier lifestyle, pain-related suffering) from the average Hungarian population. Therefore, as part of a multidisciplinary approach during treatment, modern management of MFS should include psychosocial exploration and psychological support in addition to traditional medical options.
Insights
Marfan syndrome patients experience unique psychosocial challenges, including sleep disturbances and pain, despite reporting higher life satisfaction. Integrating psychological support is crucial for comprehensive Marfan syndrome management.
Area of Science:
- Medical research
- Psychology
- Genetics
Background:
- Marfan syndrome (MFS) is a rare, systemic connective tissue disorder.
- MFS patients face significant psychological distress impacting quality of life.
- This study aimed to assess psychosocial aspects of MFS for improved patient management.
Purpose of the Study:
- Evaluate psychological and psychosocial factors in Marfan syndrome patients.
- Identify strategies to enhance disease management for MFS individuals.
- Compare MFS patient well-being to the general Hungarian population.
Main Methods:
- Prospective study of 66 adult Marfan syndrome patients (operated vs. non-operated).
- Utilized multiple questionnaire tests for mental and physical state assessment.
- Compared MFS patient data with a propensity-matched Hungarian population (Hungarostudy).
Main Results:
- Marfan syndrome patients reported moderate pain disability, mild depressive symptoms, and sleep disturbances compared to the general population.
- Despite challenges, MFS patients reported higher life satisfaction and happiness.
- Operated patients showed higher alcohol consumption; non-operated patients had more sleep disturbances.
Conclusions:
- Marfan syndrome patients exhibit distinct psychosocial profiles, including sleep issues and pain, compared to the general population.
- A healthier lifestyle was observed in MFS patients regarding smoking.
- Multidisciplinary MFS management should incorporate psychosocial assessment and support alongside medical treatments.
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