Kefi Asma, Helali Wiem, Ben Abdelghani Khaoula, El Euch Mounira, Sassi Cyrine, Turki Sami, Abderrahim Ezzeddine
Department of Internal Medicine A, Charles Nicolle hospital, Tunis, Faculty of Medicine of Tunis, University of Tunis El Manar, Tunis, Tunisia.
Tunis Med. 2023 Oct 5;101(10):765-769.
Sarcoidosis is a systemic granulomatosis that can be associated with large-scale physical and mental disability, affecting the health related quality-of-life (HRQoL) of patients.
To evaluate the HRQoL of tunisian patients with sarcoidosis and to identify the factors that influence it.
We conducted an analytical, cross-sectional study collecting 31 patients with sarcoidosis according to the ATS/ERS/WASOG criteria. The evaluation of the HRQoL was assessed by two questionnaires in tunisian dialect. The generic score was the Medical Outcome Study 36-Short Form Health Survey (SF-36).The specific score used was the Sarcoidosis Health Questionnaire (SHQ).
The HRQoL of our 31 patients was more affected in the three domains of the SHQ compared to the SF-36, which is in favor of the better sensitivity of the SHQ to detect the influence of the extent of sarcoidosis on the HRQoL. Factors associated with more impaired HRQoLwere: age at disease onset, age at interview, comorbidities, altered spirometry results, ocular involvement, chronic cholestasis, splenic nodules, arthralgia, organ count ≥3, lymphopenia and cholestasis at the time of the interview. Taking an immunosuppressant agent, particularly Methotrexate, was associated with HRQoL improvement. The number of relapses was the most correlated factor with an altered HRQoL, and this in several domains.
For an effective management of patients with sarcoidosis, a bio-psycho-social approach is now necessary in order to assess the real and global impact of the disease and to improve the HRQoL of patients. Disease-specific scores seem more reliable in achieving these goals.
结节病是一种全身性肉芽肿病，可导致严重的身心残疾，影响患者的健康相关生活质量（HRQoL）。
评估突尼斯结节病患者的HRQoL，并确定影响其的因素。
我们进行了一项分析性横断面研究，根据美国胸科学会（ATS）/欧洲呼吸学会（ERS）/世界结节病和其他肉芽肿病协会（WASOG）标准收集了31例结节病患者。采用两份突尼斯方言问卷对HRQoL进行评估。通用评分采用医学结局研究36项简短健康调查（SF-36）。使用的特定评分是结节病健康问卷（SHQ）。
与SF-36相比，我们的31例患者的HRQoL在SHQ的三个领域受影响更大，这表明SHQ在检测结节病程度对HRQoL的影响方面具有更高的敏感性。与HRQoL受损更严重相关的因素包括：发病年龄、访谈时年龄、合并症、肺功能测定结果异常、眼部受累、慢性胆汁淤积、脾结节、关节痛、受累器官数≥3、淋巴细胞减少和访谈时胆汁淤积。服用免疫抑制剂，尤其是甲氨蝶呤，与HRQoL改善相关。复发次数是与HRQoL改变最相关的因素，且在多个领域均如此。
为了有效管理结节病患者，现在需要采用生物-心理-社会方法来评估疾病的实际和整体影响，并改善患者的HRQoL。疾病特异性评分在实现这些目标方面似乎更可靠。
