Symptom experience after lung transplantation: impact on quality of life and adherence

Background: Patients' perceptions of immunosuppression- related symptom experience may impact on quality of life (QoL) and medication adherence. Methods: 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. Results: 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 <= 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%). Conclusions: 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.