Department of Molecular Medicine, Sapienza University of Rome and Fondazione Eleonora Lorillard Spencer Cenci, Rome, Italy.
Yonsei Med J. 2012 May;53(3):603-10. doi: 10.3349/ymj.2012.53.3.603.
To quantify the health related quality of life in primary immunodeficiency patients.
We used generic health status and general psychological health questionnaires to determine the range of issues that needed to be considered in examining the burden of common variable immunodeficiency (CVID).
The health status of patients with CVID was lower than that observed in normal subjects. Overall, Role-Physical and General Health scales correlated with a poorer clinical status. Surprisingly, the duration of disease did not influence health status. Being female, older, General Health Questionnaire-positive and alexithymic proved to be major risk factors associated with a poor health status. Patients with chronic lung disease and chronic diarrhea had the lowest values on the Medical Outcome Study, Short Form SF-36 (SF-36) scales. Disease severity perception was associated with the General Health Questionnaire and alexithymia status. Limitations in daily activities as a result of lower physical health were the major problems facing common variable immunodeficiency patients.
Our data underlined the importance of conducting a periodical health related quality of life assessment on patients with primary antibody deficiencies and, moreover, stressed the necessity of providing psychological support to at risk patients.
量化原发性免疫缺陷患者的健康相关生活质量。
我们使用通用健康状况和一般心理健康问卷来确定检查常见可变免疫缺陷（CVID）负担时需要考虑的问题范围。
CVID 患者的健康状况低于正常人群。总体而言，角色身体和一般健康量表与较差的临床状况相关。令人惊讶的是，疾病持续时间并不影响健康状况。女性、年龄较大、一般健康问卷阳性和述情障碍被证明是与健康状况不佳相关的主要危险因素。患有慢性肺病和慢性腹泻的患者在医学结局研究短表 SF-36（SF-36）量表上的得分最低。疾病严重程度感知与一般健康问卷和述情障碍状况相关。由于身体健康状况不佳而导致的日常活动受限是常见可变免疫缺陷患者面临的主要问题。
我们的数据强调了对原发性抗体缺陷患者进行定期健康相关生活质量评估的重要性，并且强调了为高危患者提供心理支持的必要性。
