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Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data
- Source :
- Supportive Care in Cancer, 30, 5137-5146, Supportive Care in Cancer, Supportive Care in Cancer, 30(6), 5137-5146. SPRINGER, Supportive Care in Cancer, 30(6), 5137-5146. Springer-Verlag, Supportive Care in Cancer. SPRINGER, Supportive Care in Cancer, 30, 6, pp. 5137-5146
- Publication Year :
- 2022
- Publisher :
- Springer Science and Business Media LLC, 2022.
-
Abstract
- 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.
- Subjects :
- Symptom measurement
Gastrointestinal Stromal Tumors
EUROPEAN-ORGANIZATION
MESYLATE
SDG 3 - Good Health and Well-being
QUALITY-OF-LIFE
Surveys and Questionnaires
Humans
INTERNET
Protein Kinase Inhibitors
Fatigue
Muscle Cramp
Tyrosine kinase inhibitors
OUTCOMES
Patient-reported outcomes
Gastrointestinal stromal tumours
humanities
PREVALENCE
Cross-Sectional Studies
Oncology
Imatinib Mesylate
Quality of Life
ADVERSE EVENTS
Social media mining
TYROSINE KINASE INHIBITOR
Patient forum
CLINICAL-TRIALS
Rare cancers Radboud Institute for Health Sciences [Radboudumc 9]
Subjects
Details
- ISSN :
- 14337339 and 09414355
- Volume :
- 30
- Database :
- OpenAIRE
- Journal :
- Supportive Care in Cancer
- Accession number :
- edsair.doi.dedup.....2a9608fd4f9adf043ed7e59538c1a979