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

Dide den Hollander; Anne R. Dirkson; Suzan Verberne; Wessel Kraaij; Gerard van Oortmerssen; Hans Gelderblom; Astrid Oosten; Anna K.L. Reyners; Neeltje Steeghs; Winette T.A. van der Graaf; Ingrid M.E. Desar; Olga Husson

doi:10.1007/s00520-022-06929-3

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

Dide den Hollander, Anne R. Dirkson, Suzan Verberne, Wessel Kraaij, Gerard van Oortmerssen, Hans Gelderblom, Astrid Oosten, Anna K.L. Reyners, Neeltje Steeghs, Winette T.A. van der Graaf, Ingrid M.E. Desar, Olga Husson^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

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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.

Original language	English
Pages (from-to)	5137-5146
Number of pages	10
Journal	Supportive Care in Cancer
Volume	30
Issue number	6
Early online date	2 Mar 2022
DOIs	https://doi.org/10.1007/s00520-022-06929-3
Publication status	Published - Jun 2022

Bibliographical note

Funding Information:
The survey study was partly funded by a research grant from Novartis (grant no. 006.18). The forum study was funded by a research grant from the SIDN fund (grant no. 174054). D. den Hollander is supported by a research grant from the EORTC Quality of Life Group (grant no. 003–2018). O. Husson is supported by a VIDI grant from the Netherlands Organization for Scientific Research (VIDI198.007). These funding sources did not have any involvement in the conduction of this research.

Publisher Copyright:
© 2022, The Author(s).

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den Hollander, D., Dirkson, A. R., Verberne, S., Kraaij, W., van Oortmerssen, G., Gelderblom, H., Oosten, A., Reyners, A. K. L., Steeghs, N., van der Graaf, W. T. A., Desar, I. M. E., & Husson, O. (2022). Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data. Supportive Care in Cancer, 30(6), 5137-5146. https://doi.org/10.1007/s00520-022-06929-3

@article{d43150f6be3d4bb9ab118af46dcc21b5,

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

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.",

author = "{den Hollander}, Dide and Dirkson, {Anne R.} and Suzan Verberne and Wessel Kraaij and {van Oortmerssen}, Gerard and Hans Gelderblom and Astrid Oosten and Reyners, {Anna K.L.} and Neeltje Steeghs and {van der Graaf}, {Winette T.A.} and Desar, {Ingrid M.E.} and Olga Husson",

note = "Funding Information: The survey study was partly funded by a research grant from Novartis (grant no. 006.18). The forum study was funded by a research grant from the SIDN fund (grant no. 174054). D. den Hollander is supported by a research grant from the EORTC Quality of Life Group (grant no. 003–2018). O. Husson is supported by a VIDI grant from the Netherlands Organization for Scientific Research (VIDI198.007). These funding sources did not have any involvement in the conduction of this research. Publisher Copyright: {\textcopyright} 2022, The Author(s).",

year = "2022",

month = jun,

doi = "10.1007/s00520-022-06929-3",

language = "English",

volume = "30",

pages = "5137--5146",

journal = "Supportive Care in Cancer",

issn = "0941-4355",

publisher = "Springer-Verlag",

number = "6",

}

den Hollander, D, Dirkson, AR, Verberne, S, Kraaij, W, van Oortmerssen, G, Gelderblom, H, Oosten, A, Reyners, AKL, Steeghs, N, van der Graaf, WTA, Desar, IME & Husson, O 2022, 'Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data', Supportive Care in Cancer, vol. 30, no. 6, pp. 5137-5146. https://doi.org/10.1007/s00520-022-06929-3

TY - JOUR

T1 - Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment

T2 - combining questionnaire and forum data

AU - den Hollander, Dide

AU - Dirkson, Anne R.

AU - Verberne, Suzan

AU - Kraaij, Wessel

AU - van Oortmerssen, Gerard

AU - Gelderblom, Hans

AU - Oosten, Astrid

AU - Reyners, Anna K.L.

AU - Steeghs, Neeltje

AU - van der Graaf, Winette T.A.

AU - Desar, Ingrid M.E.

AU - Husson, Olga

N1 - Funding Information: The survey study was partly funded by a research grant from Novartis (grant no. 006.18). The forum study was funded by a research grant from the SIDN fund (grant no. 174054). D. den Hollander is supported by a research grant from the EORTC Quality of Life Group (grant no. 003–2018). O. Husson is supported by a VIDI grant from the Netherlands Organization for Scientific Research (VIDI198.007). These funding sources did not have any involvement in the conduction of this research. Publisher Copyright: © 2022, The Author(s).

PY - 2022/6

Y1 - 2022/6

N2 - 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.

AB - 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.

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DO - 10.1007/s00520-022-06929-3

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SN - 0941-4355

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ER -

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

Abstract

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