(P 115) PSYCHOLOGICAL AND SOCIAL CHALLENGES OF PATIENTS WITH ADVANCED AND METASTATIC GASTROINTESTINAL STROMAL TUMORS ON LONG-TERM TREATMENT WITH TYROSINE KINASE INHIBITORS: A QUALITATIVE STUDY

Objective: Tyrosine kinase inhibitors (TKIs) have revolutionized the treatment of advanced and metastatic gastrointestinal stromal tumours (GISTs). Patients are experiencing prolonged survival but often at the expense of their health-related quality of life (HRQoL). It is not only the physical side effects that influence GIST patients’ daily lives, but also the psychological and social challenges they have to overcome. This qualitative study aimed to explore the impact of the psychological and social issues among GIST patients with advanced and metastatic disease on ≥ 5 years of TKI treatment.

Methods: Semi-structured interviews with 15 advanced and metastatic GIST patients and 10 health-care professionals (HCPs) with experience of delivering care to this specific patient group were conducted. The gathered data were interpreted using a thematic analysis.

Results: Participants expressed various psychological issues including fear (12 patients, 8 HCPs), more negative emotions and feelings (10 patients, 8 HCPs), anxious feelings around scans (scanxiety) (10 patients, 9 HCPs), doubt (7 patients, 4 HCPs), living with uncertainty (7 patients, 2 HCPs), lack of understanding from others and HCPs (7 patients, 2 HCPs), and constantly being reminded of their illness (4 patients, 4 HCPs). Both patients and HCPs reported fear of becoming resistant to treatment (8 patients, 3 HCPs), disease progression (4 patients, 6 HCPs), and death (5 patients, 1 HCP). Interestingly, patients experienced fear of long-term side effects of the TKI treatment and regular CT-scans (n=5), which HCPs did not report. Doubts of patients were mostly about the effect of continuing treatment (n=4) and stopping treatment (n=5), although none of the patients actually considered stopping treatment. Social issues included challenges in relationships (10 patients, 9 HCPs) and work (6 patients, 4 HCPs), financial difficulties (6 patients, 3 HCPs), and feeling limited to participate in social activities (10 patients, 9 HCPs). Patients indicated that they often had to adjust (n=5) or plan (n=3) their social activities in advance, and five patients stated that they had to give up their hobby.

Conclusions: The reported psychological and social challenges can significantly hamper the overall quality of life of GIST patients. Some challenges were clearly underreported and hardly recognized by HCPs, as they may tend to focus on the physical side effects and clinical outcomes of treatment. Therefore, it is essential to take the patient’s perspective into account in research and clinical practice to ensure an optimal care for this patient group.