Kugler Christiane, Fischer Stefan, Gottlieb Jens, Tegtbur Uwe, Welte Tobias, Goerler Heidi, Simon Andre, Haverich Axel, Strueber Martin
Hannover Thoracic Transplant Program, Division of Thoracic and Cardiovascular Surgery, Hannover Medical School, Hannover, Germany.
Clin Transplant. 2007 Sep-Oct;21(5):590-6. doi: 10.1111/j.1399-0012.2007.00693.x.
Patients' perceptions of immunosuppression- related symptom experience may impact on quality of life (QoL) and medication adherence.
A total of 308 lung transplant recipients were screened for study inclusion. Two hundred eighty-seven patients (response rate 93%) completed a 91-item questionnaire consisting of subscales focusing on symptom experiences (frequency and distress), and adherence. QoL was assessed by a 40-item standardized instrument. Impact of symptom experiences on QoL and adherence were assessed. Potential determinants of immunosuppression induced symptom experiences were evaluated.
The most frequent reported symptoms were tremor (70%) and hirsutism (68.1%), whereas Cushingoid appearance (38.6%) and muscle weakness (31.9%) appeared to be the most distressing symptoms. Women (p < 0.001) and younger patients (<40 yr; p < 0.0001) reported a significantly higher level of symptom experience compared with their counterparts respectively. Symptom experiences negatively influenced QoL in all dimensions (p < 0.006). Those who described experiencing adverse effects reported significantly more "drug holidays" (p < or = 0.004) compared with those reporting minor frequent adverse effects. Patients' self-reported strategies to reduce adverse effects were to postpone medication intake (30%), to drop doses (8%), or to reduce doses (9%).
This study establishes a relationship between patients' perceptions of immunosuppression-related symptom experiences and the impact on QoL and adherence. Immunosuppression is accompanied by significant adverse effects in both symptom frequency and distress. Most frequently experienced symptoms do not necessarily have the greatest impact on perceived distress, and vice versa. High levels of adverse effects tend to negatively influence patients' QoL and adherence. Future research is required to understand the relationship of these complex variables.
患者对免疫抑制相关症状体验的认知可能会影响生活质量（QoL）和药物依从性。
共筛选了308名肺移植受者纳入研究。287名患者（应答率93%）完成了一份91项问卷，该问卷由关注症状体验（频率和困扰程度）及依从性的分量表组成。生活质量通过一份40项标准化工具进行评估。评估了症状体验对生活质量和依从性的影响。对免疫抑制引起的症状体验的潜在决定因素进行了评估。
最常报告的症状是震颤（70%）和多毛症（68.1%），而库欣样外貌（38.6%）和肌肉无力（31.9%）似乎是最令人困扰的症状。与男性相比，女性（p<0.001）报告的症状体验水平显著更高；与年长患者相比，年轻患者（<40岁；p<0.0001）报告的症状体验水平显著更高。症状体验在所有维度上均对生活质量产生负面影响（p<0.006）。与报告轻微频繁不良反应的患者相比，描述经历不良反应的患者报告的“停药期”显著更多（p≤0.004）。患者自我报告的减轻不良反应的策略是推迟服药（30%）、漏服剂量（8%）或减少剂量（9%）。
本研究确立了患者对免疫抑制相关症状体验的认知与对生活质量和依从性的影响之间的关系。免疫抑制在症状频率和困扰程度方面均伴有显著的不良反应。最常经历的症状不一定对感知到的困扰影响最大，反之亦然。高水平的不良反应往往会对患者的生活质量和依从性产生负面影响。需要进一步研究以了解这些复杂变量之间的关系。
