Mental Health and Quality of Life in Thoracic Aortic Disease: Evaluating the Impact of the MacNew Instrument and Support Resources
Clinical Genetics and Therapeutics
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Primary Categories:
- Genetic Counseling
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Secondary Categories:
- Genetic Counseling
Introduction:
Introduction: Thoracic aortic aneurysm and dissection (TAAD) are life-threatening cardiovascular conditions, with dissection often being the first indication of disease for many patients. While prophylactic surgery can prevent dissection when an aneurysm is identified early, both emergent and elective procedures have profound impacts not only on physical health but also on the psychological well-being of patients and their families. Studies have shown that TAAD patients frequently experience heightened anxiety, depression, and post-traumatic stress disorder (PTSD) following diagnosis and treatment, which can hinder recovery and reduce quality of life. Despite this, existing research on health-related quality of life (HRQOL) in TAAD has focused primarily on surgical outcomes. There remains a significant gap in addressing the psychological challenges these patients face, which play a crucial role in their overall recovery and well-being.
Methods:
Methods: To address the psychological challenges faced by patients with TAAD, a mental health resource was developed with support from John Ritter Foundation for Aortic Health. The resource, Life with Aortic Disease: Caring for Your Mental Health, is available both online and in print (https://johnritterfoundation.org/mental-health/) and offers educational materials on key mental health topics such as the grief cycle, therapeutic interventions, and emotional coping strategies, including exercise, meditation, and art therapy. It also provides information on accessing local and national support services and highlights barriers to healthcare access and disparities that may affect patient outcomes.
Patients who received the resource were invited to participate in this research study. The study collected demographic data, assessed the perceived usefulness of the resource, and employed the MacNew Heart Disease HRQOL Instrument, a validated tool for evaluating quality of life specifically in individuals with heart disease.
The MacNew Instrument assesses three core domains:
Results:
Results: The initial cohort consisted of 24 participants, with a relatively homogenous demographic composition – 22 participants identified as white. The group included 15 females and 9 males, ranging in age from 32 to 68 years. A total of 12 patients completed the MacNew HRQOL assessment at 1 month, and 13 at 6 months.
The MacNew instrument, which scores on a 1-7 scale (with lower scores indicating poorer quality of life), yielded the following results:
These are lower global scale means than populations with angina (5.3) or heart failure (5.1) reported in the literature.
Conclusion:
Conclusions: Preliminary findings suggest that integrating mental health resources with TAAD care may improve coping strategies and enhance quality of life. As one participant noted, "I wish this was available to me at the time of my dissection 3 years ago. I only now in the last 6 months had access to it. It will be an exceptional resource for Marfans/dissection patients, as it has been for me. Thank you." This feedback underscores the value of resources like Life with Aortic Disease: Caring for Your Mental Health, which address the often-overlooked psychological effects of TAAD. By implementing tools like the MacNew Instrument to target high-risk individuals with poorer HRQOL and by developing targeted mental health resources, we aim to foster better outcomes for patients navigating the complexities of aortic disease and its psychological ramifications. Future research will implement screening tool and resources into inpatient care.
Introduction: Thoracic aortic aneurysm and dissection (TAAD) are life-threatening cardiovascular conditions, with dissection often being the first indication of disease for many patients. While prophylactic surgery can prevent dissection when an aneurysm is identified early, both emergent and elective procedures have profound impacts not only on physical health but also on the psychological well-being of patients and their families. Studies have shown that TAAD patients frequently experience heightened anxiety, depression, and post-traumatic stress disorder (PTSD) following diagnosis and treatment, which can hinder recovery and reduce quality of life. Despite this, existing research on health-related quality of life (HRQOL) in TAAD has focused primarily on surgical outcomes. There remains a significant gap in addressing the psychological challenges these patients face, which play a crucial role in their overall recovery and well-being.
Methods:
Methods: To address the psychological challenges faced by patients with TAAD, a mental health resource was developed with support from John Ritter Foundation for Aortic Health. The resource, Life with Aortic Disease: Caring for Your Mental Health, is available both online and in print (https://johnritterfoundation.org/mental-health/) and offers educational materials on key mental health topics such as the grief cycle, therapeutic interventions, and emotional coping strategies, including exercise, meditation, and art therapy. It also provides information on accessing local and national support services and highlights barriers to healthcare access and disparities that may affect patient outcomes.
Patients who received the resource were invited to participate in this research study. The study collected demographic data, assessed the perceived usefulness of the resource, and employed the MacNew Heart Disease HRQOL Instrument, a validated tool for evaluating quality of life specifically in individuals with heart disease.
The MacNew Instrument assesses three core domains:
- Physical limitations: Impact on physical activity and daily tasks.
- Emotional functioning: Psychological effects, including stress, anxiety, and depression.
- Social functioning: Ability to engage in social activities and maintain relationships.
Results:
Results: The initial cohort consisted of 24 participants, with a relatively homogenous demographic composition – 22 participants identified as white. The group included 15 females and 9 males, ranging in age from 32 to 68 years. A total of 12 patients completed the MacNew HRQOL assessment at 1 month, and 13 at 6 months.
The MacNew instrument, which scores on a 1-7 scale (with lower scores indicating poorer quality of life), yielded the following results:
- Global scales: mean 4.60; median 4.33 (2.68-6.12)
- Emotional scale: mean 4.44; median 4.54 (2.67-5.96)
- Physical scale: mean 4.70; median 4.46 (2.46-6.62)
- Social scale: mean 4.66, median 4.36 (2.46-6.69
These are lower global scale means than populations with angina (5.3) or heart failure (5.1) reported in the literature.
Conclusion:
Conclusions: Preliminary findings suggest that integrating mental health resources with TAAD care may improve coping strategies and enhance quality of life. As one participant noted, "I wish this was available to me at the time of my dissection 3 years ago. I only now in the last 6 months had access to it. It will be an exceptional resource for Marfans/dissection patients, as it has been for me. Thank you." This feedback underscores the value of resources like Life with Aortic Disease: Caring for Your Mental Health, which address the often-overlooked psychological effects of TAAD. By implementing tools like the MacNew Instrument to target high-risk individuals with poorer HRQOL and by developing targeted mental health resources, we aim to foster better outcomes for patients navigating the complexities of aortic disease and its psychological ramifications. Future research will implement screening tool and resources into inpatient care.
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