Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data

• Published in: Supportive care in cancer Vol. 30; no. 6; pp. 5137 - 5146
• Main Authors: den Hollander, Dide, Dirkson, Anne R., Verberne, Suzan, Kraaij, Wessel, van Oortmerssen, Gerard, Gelderblom, Hans, Oosten, Astrid, Reyners, Anna K. L., Steeghs, Neeltje, van der Graaf, Winette T. A., Desar, Ingrid M. E., Husson, Olga
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.06.2022; Springer; Springer Nature B.V
• Subjects: Algorithms; Antimitotic agents; Antineoplastic agents; Care and treatment; Cross-Sectional Studies; Data mining; Fatigue - epidemiology; Gastric cancer; Gastrointestinal cancer; Gastrointestinal Stromal Tumors - drug therapy; Humans; Imatinib Mesylate - adverse effects; Inhibitor drugs; Machine learning; Medical research; Medicine; Medicine & Public Health; Medicine, Experimental; Muscle Cramp; Muscle pain; Nursing; Nursing Research; Oncology; Original; Original Article; Pain Medicine; Patients; Protein Kinase Inhibitors - adverse effects; Quality of Life; Questionnaires; Rehabilitation Medicine; Skin diseases; Social networks; Surveys; Surveys and Questionnaires; Symptom management; Targeted cancer therapy; Tumors; Tyrosine; Social media mining; Patient-reported outcomes; Symptom measurement; Patient forum; Tyrosine kinase inhibitors; Gastrointestinal stromal tumours
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-022-06929-3

Purpose Treatment with the tyrosine kinase inhibitor (TKI) imatinib in patients with gastrointestinal stromal tumours (GIST) causes symptoms that could negatively impact health-related quality of life (HRQoL). Treatment-related symptoms are usually clinician-reported and little is known about patient reports. We used survey and online patient forum data to investigate (1) prevalence of patient-reported symptoms; (2) coverage of symptoms mentioned on the forum by existing HRQoL questionnaires; and (3) priorities of prevalent symptoms in HRQoL assessment. Methods In the cross-sectional population-based survey study, Dutch GIST patients completed items from the EORTC QLQ-C30 and Symptom-Based Questionnaire (SBQ). In the forum study, machine learning algorithms were used to extract TKI side-effects from English messages on an international online forum for GIST patients. Prevalence of symptoms related to imatinib treatment in both sources was calculated and exploratively compared. Results Fatigue and muscle pain or cramps were reported most frequently. Seven out of 10 most reported symptoms (i.e. fatigue, muscle pain or cramps, facial swelling, joint pain, skin problems, diarrhoea, and oedema) overlapped between the two sources. Alopecia was frequently mentioned on the forum, but not in the survey. Four out of 10 most reported symptoms on the online forum are covered by the EORTC QLQ-C30. The EORTC-SBQ and EORTC Item Library cover 9 and 10 symptoms, respectively. Conclusion This first overview of patient-reported imatinib-related symptoms from two data sources helps to determine coverage of items in existing questionnaires, and prioritize HRQoL issues. Combining cancer-generic instruments with treatment-specific item lists will improve future HRQoL assessment in care and research in GIST patients using TKI.