Department of Rheumatology, Fangshan Hospital, Beijing University of Chinese Medicine, Beijing, 102401, China.
Department of Traditional Chinese Medicine, Peking Union Medical College Hospital, Peking Union Medical College and Chinese Academy of Medical Sciences, Beijing, 100730, China.
Orphanet J Rare Dis. 2023 Jul 27;18(1):217. doi: 10.1186/s13023-023-02826-y.
SAPHO syndrome is a group of special syndromes characterized by synovitis, acne, pustulosis, hyperostosis and osteitis. Skin lesions and joint damage are the main clinical manifestations. Among them, females mostly present with palm toe pustulosis, while males have severe acne as the main external manifestation. The bone and joint damage characterized by bone hypertrophy and osteitis is the core manifestation of SAPHO and affects all parts of the body. SAPHO syndrome causes great physical and mental suffering to patients, and it also brings a huge financial burden to the family. The purpose of this study is to explore the impact of SAPHO on the quality of sexual life of patients.
We screened and included 249 SAPHO patients (169 women and 80 men) from Peking Union Medical College Hospital (Beijing, China). First, we recorded the basic situation of the patient through questionnaires (including gender, age, SAPHO duration, BMI, smoking, drinking, marital status, educational level, occupational status and work status.). Then, the patient needed to fill in the Short Form-36 quality of life questionnaire (SF-36 QoL) to record the quality of life. For Sexual dysfunction (SD), female patients needed to fill in the Female Sexual Function Index (FSFI) to assess the quality of sexual life; while the International Index of Erectile Function (IIEF) was used to assess the SD of male patients. At the same time, we used self-esteem and relationship questionnaire (SEAR) to analyze the psychological state of SAPHO patients. Finally, we performed statistical analysis on the data obtained, and then explored the connection between SAPHO and SD.
In this cross-sectional study, a total of 249 patients completed the questionnaire and constituted the study population. We found that among 169 female patients, 124 patients had FSD (73.4%); while 45 patients did not have FSD (26.6%); and among 80 male patients, 45 (56.3%) had ED; However, 35 patients did not have ED (43.7%). The results of the quality of life and mental state assessment showed that female patients with SD showed lower scores in terms of mental state. Among all male participants, we found no significant difference in quality of life and mental state among participants with or without SD. In addition, there was no significant difference in the duration of SAPHO between female and male participants with or without SD.
This study is the first to evaluate the SD of SAPHO patients. The incidence of SD in female SAPHO patients is higher than that in male patients; the cause of female SD may be mainly psychological factors. These results prove that it is particularly important to focus on regulating their psychological state while diagnosing and treating SAPHO patients in clinical practice.
SAPHO 综合征是一组以滑膜炎、痤疮、脓疱病、骨肥厚和骨炎为特征的特殊综合征。皮肤损害和关节损伤是其主要的临床表现。其中,女性多表现为掌跖脓疱病,而男性则以严重痤疮为主要外在表现。以骨肥厚和骨炎为特征的骨和关节损害是 SAPHO 的核心表现,可影响全身各个部位。SAPHO 综合征给患者带来了巨大的身心痛苦,也给家庭带来了巨大的经济负担。本研究旨在探讨 SAPHO 对患者性生活质量的影响。
我们从北京协和医院(北京,中国)筛选并纳入了 249 例 SAPHO 患者(169 名女性和 80 名男性)。首先,我们通过问卷调查(包括性别、年龄、SAPHO 持续时间、BMI、吸烟、饮酒、婚姻状况、教育程度、职业状况和工作状况)记录患者的基本情况。然后,患者需要填写简明 36 项健康调查量表(SF-36 QoL)来记录生活质量。对于性功能障碍(SD),女性患者需要填写女性性功能指数(FSFI)来评估性生活质量;而男性患者则使用国际勃起功能指数(IIEF)来评估 SD。同时,我们使用自尊和关系问卷(SEAR)来分析 SAPHO 患者的心理状态。最后,我们对获得的数据进行了统计分析,然后探讨了 SAPHO 与 SD 之间的联系。
在这项横断面研究中,共有 249 例患者完成了问卷调查,构成了研究人群。我们发现,在 169 名女性患者中,有 124 例患者存在 FSD(73.4%);而有 45 例患者没有 FSD(26.6%);在 80 名男性患者中,有 45 例(56.3%)患有 ED;然而,有 35 例患者没有 ED(43.7%)。生活质量和心理状态评估结果表明,SD 的女性患者在心理状态方面的得分较低。在所有男性参与者中,我们发现 SD 参与者和无 SD 参与者在生活质量和心理状态方面没有显著差异。此外,SD 女性参与者和男性参与者的 SAPHO 持续时间之间没有显著差异。
本研究首次评估了 SAPHO 患者的 SD。女性 SAPHO 患者的 SD 发生率高于男性患者;女性 SD 的原因可能主要是心理因素。这些结果证明,在临床实践中诊断和治疗 SAPHO 患者时,特别需要注重调节他们的心理状态。