Researchers reported that patients with multiple endocrine neoplasia type 2 (MEN2) and medullary thyroid carcinoma (MTC) experience psychosocial burdens such as pain affecting their daily life, as well as difficulties in concentrating, as published in Children.
MEN2A and MEN2B are often associated with MTC, which is a chronic and indolent disease that can progress without symptoms for years or even decades. Studies that have looked into the impact of MTC on quality of life demonstrate that a diagnosis causes psychological distress and difficulties with coping.
The authors of this study investigated the psychosocial impact of this disease on parents and families. They recruited pediatric and adult patients with MTC or those with known MEN2 syndrome, with or without MTC. The recruited participants must be able to travel for follow-up studies.
To measure their psychosocial responses, a psychosocial provider met with each patient, and each patient was asked to complete self-report measures. Parents and caregivers of patients under 18 years of age were invited to give their input as well. The researchers designed the self-report assessment since there are no comparable assessments investigating how MTC impacts the quality of life.
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“It contains items covering demographic factors, family stressors, general health, psychosocial concerns, psychiatric history, self-identified needs, expectations regarding disease outcome and positive events that might have occurred since diagnosis, and interest in a range of possible psychosocial services,” they wrote.
In addition, the research team also used a screening tool known as the “Distress Thermometer,” which is endorsed by the National Comprehensive Care Network for assessing distress in adult patients with cancer. The researchers developed 2 versions of this assessment tool, one for adolescents and another for young adults.
The results demonstrated that patients who reported moderate to severe distress expressed feelings of worry (80%), pain (70%), and fatigue (80%). The most prevalent symptoms expressed by pediatric patients were difficulties in concentrating (65.4%) and “attention challenges” (50%).
“The challenges described by patients in this study are opportunities for clinical providers,” the authors concluded. “Ongoing, patient-centered education about MTC and symptom management, access to mental health resources, and continued research are paramount in the continued improvement of quality of life for those living with MTC.”
Lockridge R, Bedoya S, Allen T, Widemann BC, Akshintala S, Glod J, Wiener L. Psychosocial characteristics and experiences in patients with multiple endocrine neoplasia type 2 (MEN2) and medullary thyroid carcinoma (MTC). Children. 2022; 9(6):774. doi:10.3390/children9060774