Abstract
PURPOSE: Adjuvant or palliative treatment with imatinib improved the survival of patients with rare gastrointestinal stromal tumours (GISTs) impressively. However, the impact on quality of life (QoL) and patients’ experiences with imatinib is largely unknown. We performed a survey study in order to assess QoL and experiences with imatinib treatment, comparing the adjuvant and metastatic setting. METHODS: Patients with GIST who were on active imatinib completed a cross-sectional web-based survey with the following questionnaires: EORTC Quality of Life Questionnaire (QLQ-C30), Treatment Satisfaction Questionnaire for Medication (TSQM), Beliefs about Medicines Questionnaire (BMQ), Cancer Worry Scale (CWS) and Medication Adherence Report Scale (MARS). RESULTS: Symptom burden and the scores for the QLQ-C30 scales were similar between adjuvant (n = 19) and metastatic disease (n = 56), with a mean(SD) global QoL score of 69.2 in the entire study population (n = 77). Patients with metastatic disease experienced less side effects (63.0(20.3) versus 51.0(22.7); p = 0.035), had better global satisfaction scores (79(15.9) versus 68(18.8); p = 0.015) and are more convinced of the necessity of imatinib for controlling the disease compared to patients receiving adjuvant treatment (score 19.9(4.6) versus 17.5(3.6); p = 0.043). Approximately 3 out of 4 patients report high fear of cancer recurrence / progression, without a difference in the adjuvant or metastatic setting. Therapy adherence was high (96.1%). CONCLUSION: Patients with GIST on imatinib treatment have good QoL but show high percentage of fear for cancer recurrence / progression. Especially patients with metastatic disease believe in the necessity of imatinib. These findings help to educate and support individual patients treated with imatinib.