Mental Pain in Patients with Neurofibromatosis and Its Association with Disease Severity

Abstract

Background and Objective: The psychological experience of mental pain can lead to distress similar to that caused by actual injury or trauma. As such, it poses a life-threatening consequence for chronic patients, although it is rarely assessed and treated in clinical settings. One of the diseases associated with high levels of physical and mental pain is the rare disorder neurofibromatosis. This study aimed to evaluate mental pain in patients with neurofibromatosis and its association with disease severity. Methods: This descriptive-analytical study was conducted on 207 patients with neurofibromatosis who were members of the Iranian Neurofibromatosis Support Association during 2023. Data collection tools included a demographic and clinical information registration form and the Orbach and Mikulincer Mental Pain Scale (OMMP), which comprises 44 items and 6 subscales, with a scoring range from 44 to 220. Results: The total mental pain score was 121.15±42.41, with a range of 44 to 206. The total mental pain scores for men and women were 123.67±38.98 and 120.31±43.58, respectively. The "confusion" subscale had the highest average score, while the "fear of loneliness" subscale had the lowest average score. There was a statistically significant association between the total mental pain score and its subscales with the severity of the disease and the patient's educational level (P<0.05). Conclusion: The mental pain scores of patients with neurofibromatosis were evaluated to be relatively unfavorable.

Keywords

• pain
• neurofibromatosis
• rare disease
• psychiatrists
• fear