Abstract
PurposeTreatment 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.MethodsIn 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.ResultsFatigue 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.ConclusionThis 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.
Highlights
gastrointestinal stromal tumour (GIST) represent a rare (10–20 cases per 1,000,000/year) family of mesenchymal tumours arising anywhere along the gastrointestinal tract [1]
A cross-sectional population-based survey study was conducted among patients aged ≥ 18 years at diagnosis registered in the Netherlands Cancer Registry (NCR) and who had been diagnosed with GIST, between January 1, 2008, and December 31, 2018
This paper describes the use of two sources for patientreported symptom rates outside trials in GIST patients treated with imatinib: surveys and messages from an online patient forum
Summary
GISTs represent a rare (10–20 cases per 1,000,000/year) family of mesenchymal tumours arising anywhere along the gastrointestinal tract [1]. Treatment with tyrosine kinase inhibitors (TKIs) improves survival for patients with a gastrointestinal stromal tumour (GIST), both in the adjuvant and palliative setting, but is not without side-effects [2–4]. TKIs are the only effective systemic treatment for high-risk localized and advanced GISTs [5]. Imatinib has significantly changed the prognosis of non-resectable advanced or metastatic GIST patients: from a median overall survival of 14–18 up to 57 months [6]. TKIs are taken orally on a daily basis until progressive disease. Imatinib is considered to be moderate to well tolerated, at least when compared to conventional chemotherapy [7]. Side-effects are seen in virtually all patients, with the most frequent being (periorbital) oedema, diarrhoea, fatigue, myalgia/musculoskeletal pain, and nausea [8]
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