Leite Catarina Correia, Maia Ângela Costa
Rev Bras Reumatol. 2013 Sep-Oct;53(5):405-11.
To characterize the prevalence and impact of symptoms of scleroderma in Brazilian patients and to describe their satisfaction with medical care and psychological symptoms.
One-hundred and twenty eight Brazilian scleroderma patients participated in an online survey by filling out a Portuguese version of the Canadian Scleroderma Patient Survey of Health Concerns and Research Priorities. The mean age of participants was 38 years old (SD = 12.33), and most of the participants were females (n = 108, 88%).
Hardening/tightening of skin, itchy skin and joint pain were symptoms reported as being most frequent, whereas muscle pain and difficulty climbing stairs were symptoms reported as having a higher impact. Participants reported dissatisfaction regarding the medical care. Psychological evaluations suggested that participants who scored above clinical values for depression was significantly high (90%; n = 77). In addition, 48% (n = 42) of participants fit the clinical criteria for anxiety disorder, and 40% (n = 35) of participants fit the clinical criteria of social phobia. Finally, body image disturbance was reported by 69% (n = 88) of participants.
The physical and psychological symptoms associated with scleroderma have a significant impact on patient quality of life. The Brazilian patients in the current sample report higher levels of dissatisfaction with medical care than patients from Canada and European countries. These Brazilian patients also report more psychopathology, particularly symptoms of depression. The current results suggest that there is a need for professionals to consider and attend to the individual problems of scleroderma patients.
描述巴西硬皮病患者症状的患病率及影响，并阐述他们对医疗护理的满意度和心理症状。
128名巴西硬皮病患者参与了一项在线调查，填写了葡萄牙语版的《加拿大硬皮病患者健康问题与研究重点调查问卷》。参与者的平均年龄为38岁（标准差 = 12.33），大多数参与者为女性（n = 108，88%）。
皮肤硬化/紧绷、皮肤瘙痒和关节疼痛是报告中最常见的症状，而肌肉疼痛和爬楼梯困难是报告中影响较大的症状。参与者对医疗护理表示不满。心理评估表明，抑郁得分高于临床值的参与者比例显著较高（90%；n = 77）。此外，48%（n = 42）的参与者符合焦虑症临床标准，40%（n = 35）的参与者符合社交恐惧症临床标准。最后，69%（n = 88）的参与者报告有身体形象障碍。
与硬皮病相关的生理和心理症状对患者生活质量有重大影响。当前样本中的巴西患者对医疗护理的不满程度高于加拿大和欧洲国家的患者。这些巴西患者还报告有更多精神病理学问题，尤其是抑郁症状。当前结果表明，专业人员需要考虑并关注硬皮病患者的个体问题。
