Extended Abstract

Introduction
The purpose of this study was to evaluate the one-year performance of long-term catheters in chronic hemodialysis patients and its relationship with various patient factors. Mental pain is an emotional state associated with the disparity between one's perceived ideal self and actual self, often manifesting as a sense of emptiness due to a lack of meaning in life. This psychological experience can lead to pain, much like a physical injury or wound. One of the diseases closely linked with high levels of both physical and mental pain is the rare condition known as neurofibromatosis. Neurofibromatosis is a genetic disorder that affects the nerves and skin, where benign non-cancerous tumors grow along the nerves, causing problems with the skin and bones. Patients with neurofibromatosis face numerous physical and psychological challenges that severely impact their quality of life and daily activities. Chronic skin diseases significantly influence a person's self-image and can, therefore, affect their mental health. This study aimed to evaluate mental pain in patients with neurofibromatosis and its correlation with disease severity.
Methods
This descriptive-analytical study was conducted on 207 patients (155 women and 52 men) with neurofibromatosis, members of the Iranian Neurofibromatosis Support Association. The diagnosis of neurofibromatosis was confirmed by a dermatologist or neurologist based on clinical signs (café-au-lait spots, freckles, and cutaneous neurofibromas) or paraclinical findings (fundus examination, brain, and spinal MRI) and a certificate of diagnosis was required for association membership. Inclusion criteria included having neurofibromatosis type 1 or type 2, willingness to participate in the study, being over 18 years old, membership in the Neurofibromatosis Association, social media presence, and having a phone number. Exclusion criteria included incomplete questionnaire responses, undergoing psychiatric treatment, and using antipsychotic medications. Data collection tools included demographic and clinical information forms. A total of 207 participants completed the questionnaires. The questionnaire was designed in Porsline, and the link was shared via communication apps like Telegram, WhatsApp, and domestic apps Eitaa and Baleh. The approximate time to complete the questionnaire was 10 minutes, ensuring a comprehensive understanding of the patient's conditions and experiences.
Mental pain was measured using the Orbach and Mikulincer Mental Pain Scale (OMMP), which includes 44 items across six subscales: confusion, irreversibility, distancing, fear of loneliness, emptiness, and lack of meaning. The questionnaire is scored on a five-point Likert scale from strongly disagree (Score 1) to strongly agree (Score 5), with total scores ranging from 44 to 220. The psychometric properties of this scale have been evaluated in the Iranian population. Higher scores indicate a worse mental pain status. Disease severity was self-reported by patients using the Riccardi severity scale.
Results
The mean mental pain score among all patients was 121.15±42.41, with a range of 44 to 206. The "confusion" subscale had the highest mean score, while the "fear of loneliness" subscale had the lowest mean score. Although men had a higher mean mental pain score (123.67±38.98) compared to women (120.31±43.58), there was no statistically significant relationship between mental pain scores and gender or age. The "emptiness" subscale of mental pain showed a negative correlation with age (r=-0.145, P=0.03), indicating that with each year of increased age, the "emptiness" subscale score decreased by 0.145 units, reflecting a better mental pain status. Although patients with neurofibromatosis type 2 had higher mental pain scores (152.76±44.97) than those with neurofibromatosis type 1 (134±48.97), the difference was not statistically significant. Mental pain scores and their subscales showed significant differences across different educational levels (P<0.0001), with higher education levels correlating with lower mental pain scores. The mean mental pain score and its subscales were significantly correlated with disease severity (P<0.05); higher disease severity was associated with higher mental pain scores. Mental pain was not significantly correlated with psychiatric history, occupation, marital status, or memory problems.
Conclusion
According to the results of this study, the mental pain score in patients with neurofibromatosis was above average. The "confusion" subscale had the highest mean score, while the "fear of loneliness" subscale had the lowest mean score. Although men had higher mental pain scores than women, this finding was not statistically significant with respect to gender or age. The "emptiness" subscale of mental pain showed a negative correlation with age, indicating that older patients had better mental pain status in this subscale. Although patients with neurofibromatosis type 2 had higher mental pain scores than those with type 1, the difference was not statistically significant. A history of psychiatric disorders was identified as a factor influencing the level of mental pain in patients with neurofibromatosis. Mental pain scores and their subscales were significantly correlated with educational level and disease severity; higher education levels were associated with lower mental pain scores, and greater disease severity was associated with higher mental pain scores.
Ethical Statement
The present study was approved by the Research Ethics Committees of Islamic Azad University - Science and Research Branch (IR.IAU.SRB.REC.1402.123).
Funding
This article is based on Reyhaneh Norouzi's master's thesis in Clinical Psychology from the Faculty of Medical Science and Technology, Islamic Azad University, Science and Research Branch, Tehran, Iran.
Conflicts of Interest
The authors have no conflicts of interest.
Acknowledgement
We sincerely thank the Iranian Neurofibromatosis Support Association and the participants who completed the questionnaires and contributed to this study.

Key Message
Mental pain in patients with neurofibromatosis is relatively high.