{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T19:59:54Z","timestamp":1781639994851,"version":"3.54.5"},"reference-count":37,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2026,3,10]],"date-time":"2026-03-10T00:00:00Z","timestamp":1773100800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2026,3,10]],"date-time":"2026-03-10T00:00:00Z","timestamp":1773100800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J Gastrointest Canc"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>Adjuvant or palliative treatment with imatinib improved the survival of patients with rare gastrointestinal stromal tumours (GISTs) impressively. However, the impact on quality of life (QoL) and patients\u2019 experiences with imatinib is largely unknown. We performed a survey study in order to assess QoL and experiences with imatinib treatment, comparing the adjuvant and metastatic setting.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Patients with GIST who were on active imatinib completed a cross-sectional web-based survey with the following questionnaires: EORTC Quality of Life Questionnaire (QLQ-C30), Treatment Satisfaction Questionnaire for Medication (TSQM), Beliefs about Medicines Questionnaire (BMQ), Cancer Worry Scale (CWS) and Medication Adherence Report Scale (MARS).<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Symptom burden and the scores for the QLQ-C30 scales were similar between adjuvant (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200919) and metastatic disease (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200956), with a mean(SD) global QoL score of 69.2 in the entire study population (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200977). Patients with metastatic disease experienced less side effects (63.0(20.3) versus 51.0(22.7);\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u20090.035), had better global satisfaction scores (79(15.9) versus 68(18.8);\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u20090.015) and are more convinced of the necessity of imatinib for controlling the disease compared to patients receiving adjuvant treatment (score 19.9(4.6) versus 17.5(3.6);\n                      <jats:italic>p<\/jats:italic>\n                      \u2009=\u20090.043). Approximately 3 out of 4 patients report high fear of cancer recurrence \/ progression, without a difference in the adjuvant or metastatic setting. Therapy adherence was high (96.1%).\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Patients with GIST on imatinib treatment have good QoL but show high percentage of fear for cancer recurrence \/ progression. Especially patients with metastatic disease believe in the necessity of imatinib. These findings help to educate and support individual patients treated with imatinib.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s12029-026-01417-x","type":"journal-article","created":{"date-parts":[[2026,3,10]],"date-time":"2026-03-10T09:09:25Z","timestamp":1773133765000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Quality of Life and Experiences of Patients with Gastrointestinal Stromal Tumors (GIST) on Imatinib Treatment"],"prefix":"10.1007","volume":"57","author":[{"given":"Kim","family":"Westerdijk","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Neeltje","family":"Steeghs","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Winette T. A.","family":"van der Graaf","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joost S.","family":"Groen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nielka P.","family":"van Erp","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rosella P. M. G.","family":"Hermens","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ingrid M. E.","family":"Desar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2026,3,10]]},"reference":[{"issue":"9896","key":"1417_CR1","doi-asserted-by":"publisher","first-page":"973","DOI":"10.1016\/S0140-6736(13)60106-3","volume":"382","author":"H Joensuu","year":"2013","unstructured":"Joensuu H, Hohenberger P, Corless CL. Gastrointestinal stromal tumour. Lancet. 2013;382(9896):973\u201383.","journal-title":"Lancet"},{"key":"1417_CR2","doi-asserted-by":"publisher","first-page":"39","DOI":"10.1016\/j.canep.2015.10.031","volume":"40","author":"K Soreide","year":"2016","unstructured":"Soreide K, et al. Global epidemiology of gastrointestinal stromal tumours (GIST): a systematic review of population-based cohort studies. Cancer Epidemiol. 2016;40:39\u201346.","journal-title":"Cancer Epidemiol"},{"issue":"8","key":"1417_CR3","doi-asserted-by":"publisher","first-page":"1020","DOI":"10.1002\/bjs.10809","volume":"105","author":"WTA van der Graaf","year":"2018","unstructured":"van der Graaf WTA, et al. Nationwide trends in the incidence and outcome of patients with gastrointestinal stromal tumour in the imatinib era. Br J Surg. 2018;105(8):1020\u20137.","journal-title":"Br J Surg"},{"issue":"18","key":"1417_CR4","doi-asserted-by":"publisher","first-page":"3211","DOI":"10.1200\/JCO.2000.18.18.3211","volume":"18","author":"BE Plaat","year":"2000","unstructured":"Plaat BE, et al. Soft tissue leiomyosarcomas and malignant gastrointestinal stromal tumors: differences in clinical outcome and expression of multidrug resistance proteins. J Clin Oncol. 2000;18(18):3211\u201320.","journal-title":"J Clin Oncol"},{"issue":"12","key":"1417_CR5","doi-asserted-by":"publisher","first-page":"2693","DOI":"10.1002\/cncr.11875","volume":"98","author":"JC Trent","year":"2003","unstructured":"Trent JC, et al. A two-arm phase II study of temozolomide in patients with advanced gastrointestinal stromal tumors and other soft tissue sarcomas. Cancer. 2003;98(12):2693\u20139.","journal-title":"Cancer"},{"issue":"22","key":"1417_CR6","first-page":"8118","volume":"61","author":"BP Rubin","year":"2001","unstructured":"Rubin BP, et al. KIT activation is a ubiquitous feature of gastrointestinal stromal tumors. Cancer Res. 2001;61(22):8118\u201321.","journal-title":"Cancer Res"},{"issue":"7","key":"1417_CR7","doi-asserted-by":"publisher","first-page":"472","DOI":"10.1056\/NEJMoa020461","volume":"347","author":"GD Demetri","year":"2002","unstructured":"Demetri GD, et al. Efficacy and safety of imatinib mesylate in advanced gastrointestinal stromal tumors. N Engl J Med. 2002;347(7):472\u201380. https:\/\/doi.org\/10.1056\/NEJMoa020461.","journal-title":"N Engl J Med"},{"key":"1417_CR8","unstructured":"US Food and Drug Administration, Center for Drug Evaluation and Research. Imatinib clinical pharmacology and biopharmaceutics review. 2001; Available from: https:\/\/www.accessdata.fda.gov\/drugsatfda_docs\/nda\/2001\/21-335_Gleevec_biopharmr_P1.pdf."},{"issue":"9440","key":"1417_CR9","doi-asserted-by":"publisher","first-page":"1127","DOI":"10.1016\/S0140-6736(04)17098-0","volume":"364","author":"J Verweij","year":"2004","unstructured":"Verweij J, et al. Progression-free survival in gastrointestinal stromal tumours with high-dose imatinib: randomised trial. Lancet. 2004;364(9440):1127\u201334. https:\/\/doi.org\/10.1016\/S0140-6736(04)17098-0.","journal-title":"Lancet"},{"issue":"4","key":"1417_CR10","doi-asserted-by":"publisher","first-page":"626","DOI":"10.1200\/JCO.2007.13.4452","volume":"26","author":"CD Blanke","year":"2008","unstructured":"Blanke CD, et al. Phase III randomized, intergroup trial assessing imatinib mesylate at two dose levels in patients with unresectable or metastatic gastrointestinal stromal tumors expressing the kit receptor tyrosine kinase: S0033. J Clin Oncol. 2008;26(4):626\u201332. https:\/\/doi.org\/10.1200\/JCO.2007.13.4452.","journal-title":"J Clin Oncol"},{"key":"1417_CR11","unstructured":"European Medicines Agency, C.f.M.P.f.H.U.C. Imatinib summary of product characteristics. 2013; Available from: https:\/\/www.ema.europa.eu\/en\/documents\/product-information\/imatinib-accord-epar-product-information_en.pdf."},{"issue":"1","key":"1417_CR12","doi-asserted-by":"publisher","first-page":"20","DOI":"10.1016\/j.annonc.2021.09.005","volume":"33","author":"PG Casali","year":"2022","unstructured":"Casali PG, et al. Gastrointestinal stromal tumours: ESMO-EURACAN-GENTURIS clinical practice guidelines for diagnosis, treatment and follow-up. Ann Oncol. 2022;33(1):20\u201333.","journal-title":"Ann Oncol"},{"issue":"3","key":"1417_CR13","doi-asserted-by":"publisher","first-page":"415","DOI":"10.1007\/s11523-023-00960-y","volume":"18","author":"M Mohammadi","year":"2023","unstructured":"Mohammadi M, et al. Improved efficacy of first-line Imatinib in advanced gastrointestinal stromal tumors (GIST): the Dutch GIST registry data. Target Oncol. 2023;18(3):415\u201323.","journal-title":"Target Oncol"},{"issue":"1","key":"1417_CR14","doi-asserted-by":"publisher","first-page":"219","DOI":"10.1002\/cam4.1239","volume":"7","author":"C Boons","year":"2018","unstructured":"Boons C, et al. Patient satisfaction with information on oral anticancer agent use. Cancer Med. 2018;7(1):219\u201328.","journal-title":"Cancer Med"},{"issue":"4","key":"1417_CR15","doi-asserted-by":"publisher","first-page":"197","DOI":"10.1159\/000505177","volume":"64","author":"Y Wang","year":"2019","unstructured":"Wang Y, et al. Adherence to adjuvant Imatinib therapy in patients with gastrointestinal stromal tumor in clinical practice: a cross-sectional study. Chemotherapy. 2019;64(4):197\u2013204.","journal-title":"Chemotherapy"},{"issue":"6","key":"1417_CR16","first-page":"e13484","volume":"30","author":"M Eichler","year":"2021","unstructured":"Eichler M, et al. Quality of life of GIST patients with and without current tyrosine kinase inhibitor treatment: Cross-sectional results of a German multicentre observational study (PROSa). Eur J Cancer Care (Engl). 2021;30(6):e13484.","journal-title":"Eur J Cancer Care (Engl)"},{"issue":"2","key":"1417_CR17","first-page":"3","volume":"15","author":"EB Carbajal-Lopez","year":"2022","unstructured":"Carbajal-Lopez EB, et al. Psychological distress, fatigue and quality of life in patients with gastrointestinal stromal tumors. Psychol Russ. 2022;15(2):3\u201313.","journal-title":"Psychol Russ"},{"issue":"1","key":"1417_CR18","doi-asserted-by":"publisher","first-page":"962","DOI":"10.1186\/s12885-024-12732-6","volume":"24","author":"E Roets","year":"2024","unstructured":"Roets E, et al. Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership. BMC Cancer. 2024;24(1):962.","journal-title":"BMC Cancer"},{"issue":"5","key":"1417_CR19","doi-asserted-by":"publisher","first-page":"365","DOI":"10.1093\/jnci\/85.5.365","volume":"85","author":"NK Aaronson","year":"1993","unstructured":"Aaronson NK, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst. 1993;85(5):365\u201376.","journal-title":"J Natl Cancer Inst"},{"key":"1417_CR20","doi-asserted-by":"publisher","first-page":"79","DOI":"10.1016\/j.jclinepi.2015.08.007","volume":"69","author":"JM Giesinger","year":"2016","unstructured":"Giesinger JM, et al. Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol. 2016;69:79\u201388.","journal-title":"J Clin Epidemiol"},{"issue":"1","key":"1417_CR21","doi-asserted-by":"publisher","first-page":"89","DOI":"10.1200\/JCO.2010.28.0107","volume":"29","author":"K Cocks","year":"2011","unstructured":"Cocks K, et al. Evidence-based guidelines for determination of sample size and interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. J Clin Oncol. 2011;29(1):89\u201396.","journal-title":"J Clin Oncol"},{"issue":"1","key":"1417_CR22","doi-asserted-by":"publisher","first-page":"35","DOI":"10.1016\/j.critrevonc.2014.01.002","volume":"91","author":"SC Sodergren","year":"2014","unstructured":"Sodergren SC, et al. Systematic review of the side effects associated with tyrosine kinase inhibitors used in the treatment of gastrointestinal stromal tumours on behalf of the EORTC Quality of Life Group. Crit Rev Oncol Hematol. 2014;91(1):35\u201346.","journal-title":"Crit Rev Oncol Hematol"},{"issue":"6","key":"1417_CR23","first-page":"5137","volume":"30","author":"D den Hollander","year":"2022","unstructured":"den Hollander D, et al. Symptoms reported by gastrointestinal stromal tumour (GIST) patients on imatinib treatment: combining questionnaire and forum data. Support Care Cancer. 2022;30(6):5137\u201346.","journal-title":"Support Care Cancer"},{"key":"1417_CR24","doi-asserted-by":"publisher","first-page":"12","DOI":"10.1186\/1477-7525-2-12","volume":"2","author":"MJ Atkinson","year":"2004","unstructured":"Atkinson MJ, et al. Validation of a general measure of treatment satisfaction, the Treatment Satisfaction Questionnaire for Medication (TSQM), using a national panel study of chronic disease. Health Qual Life Outcomes. 2004;2:12.","journal-title":"Health Qual Life Outcomes"},{"key":"1417_CR25","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1080\/08870449908407311","volume":"14","author":"R Horne","year":"1998","unstructured":"Horne R, Weinman J, Hankins M. The beliefs about medicines questionnaire: the development and evaluation of a new method for assessing the cognitive representation of medication. Psychol Health. 1998;14:1\u201324.","journal-title":"Psychol Health"},{"issue":"6","key":"1417_CR26","doi-asserted-by":"publisher","first-page":"555","DOI":"10.1016\/S0022-3999(99)00057-4","volume":"47","author":"R Horne","year":"1999","unstructured":"Horne R, Weinman J. Patients\u2019 beliefs about prescribed medicines and their role in adherence to treatment in chronic physical illness. J Psychosom Res. 1999;47(6):555\u201367.","journal-title":"J Psychosom Res"},{"issue":"11","key":"1417_CR27","doi-asserted-by":"publisher","first-page":"2609","DOI":"10.1002\/pon.4782","volume":"27","author":"JAE Custers","year":"2018","unstructured":"Custers JAE, et al. Re-validation and screening capacity of the 6-item version of the Cancer Worry Scale. Psychooncology. 2018;27(11):2609\u201315.","journal-title":"Psychooncology"},{"issue":"7","key":"1417_CR28","doi-asserted-by":"publisher","first-page":"1281","DOI":"10.1111\/bcp.14193","volume":"86","author":"AHY Chan","year":"2020","unstructured":"Chan AHY, et al. The Medication Adherence Report Scale: A measurement tool for eliciting patients\u2019 reports of nonadherence. Br J Clin Pharmacol. 2020;86(7):1281\u20138.","journal-title":"Br J Clin Pharmacol"},{"issue":"12","key":"1417_CR29","doi-asserted-by":"publisher","first-page":"1616","DOI":"10.1080\/0284186X.2023.2269302","volume":"62","author":"D van de Wal","year":"2023","unstructured":"van de Wal D, et al. The association of having a monitoring or blunting coping style with psychological distress, health-related quality of life and satisfaction with healthcare in gastrointestinal stromal tumour (GIST) patients. Acta Oncol. 2023;62(12):1616\u201324.","journal-title":"Acta Oncol"},{"key":"1417_CR30","doi-asserted-by":"publisher","first-page":"5523","DOI":"10.2147\/CMAR.S305939","volume":"13","author":"RD Hofheinz","year":"2021","unstructured":"Hofheinz RD, et al. Effect of regorafenib in delaying definitive deterioration in health-related quality of life in patients with advanced cancer of three different tumor types. Cancer Manag Res. 2021;13:5523\u201333.","journal-title":"Cancer Manag Res"},{"issue":"4","key":"1417_CR31","doi-asserted-by":"publisher","first-page":"302","DOI":"10.1097\/NCC.0b013e3181f9a040","volume":"34","author":"HW van Laarhoven","year":"2011","unstructured":"van Laarhoven HW, et al. Coping, quality of life, depression, and hopelessness in cancer patients in a curative and palliative, end-of-life care setting. Cancer Nurs. 2011;34(4):302\u201314.","journal-title":"Cancer Nurs"},{"issue":"9669","key":"1417_CR32","doi-asserted-by":"publisher","first-page":"1097","DOI":"10.1016\/S0140-6736(09)60500-6","volume":"373","author":"RP Dematteo","year":"2009","unstructured":"Dematteo RP, et al. Adjuvant imatinib mesylate after resection of localised, primary gastrointestinal stromal tumour: a randomised, double-blind, placebo-controlled trial. Lancet. 2009;373(9669):1097\u2013104. https:\/\/doi.org\/10.1016\/S0140-6736(09)60500-6.","journal-title":"Lancet"},{"issue":"8","key":"1417_CR33","doi-asserted-by":"publisher","first-page":"1202","DOI":"10.3109\/0284186X.2014.1003960","volume":"54","author":"JA Custers","year":"2015","unstructured":"Custers JA, et al. Fear of progression in patients with gastrointestinal stromal tumors (GIST): is extended lifetime related to the Sword of Damocles? Acta Oncol. 2015;54(8):1202\u20138.","journal-title":"Acta Oncol"},{"issue":"1","key":"1417_CR34","doi-asserted-by":"publisher","first-page":"100434","DOI":"10.1016\/j.ijchp.2023.100434","volume":"24","author":"D van de Wal","year":"2024","unstructured":"van de Wal D, et al. Fear, anxiety and depression in gastrointestinal stromal tumor (GIST) patients in the Netherlands: data from a cross-sectional multicenter study. Int J Clin Health Psychol. 2024;24(1):100434.","journal-title":"Int J Clin Health Psychol"},{"issue":"1","key":"1417_CR35","doi-asserted-by":"publisher","first-page":"135","DOI":"10.1186\/s12874-019-0779-8","volume":"19","author":"C Enzenbach","year":"2019","unstructured":"Enzenbach C, et al. Evaluating selection bias in a population-based cohort study with low baseline participation: the LIFE-Adult-Study. BMC Med Res Methodol. 2019;19(1):135.","journal-title":"BMC Med Res Methodol"},{"issue":"1","key":"1417_CR36","doi-asserted-by":"publisher","first-page":"158","DOI":"10.1186\/s12913-020-5012-2","volume":"20","author":"TV Perneger","year":"2020","unstructured":"Perneger TV, Peytremann-Bridevaux I, Combescure C. Patient satisfaction and survey response in 717 hospital surveys in Switzerland: a cross-sectional study. BMC Health Serv Res. 2020;20(1):158.","journal-title":"BMC Health Serv Res"},{"issue":"2","key":"1417_CR37","doi-asserted-by":"publisher","first-page":"72","DOI":"10.1159\/000370338","volume":"84","author":"GA Fava","year":"2015","unstructured":"Fava GA, et al. Withdrawal symptoms after selective serotonin reuptake inhibitor discontinuation: a systematic review. Psychother Psychosom. 2015;84(2):72\u201381.","journal-title":"Psychother Psychosom"}],"container-title":["Journal of Gastrointestinal Cancer"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12029-026-01417-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s12029-026-01417-x","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s12029-026-01417-x.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T19:44:30Z","timestamp":1781639070000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s12029-026-01417-x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,10]]},"references-count":37,"journal-issue":{"issue":"1","published-online":{"date-parts":[[2026,12]]}},"alternative-id":["1417"],"URL":"https:\/\/doi.org\/10.1007\/s12029-026-01417-x","relation":{},"ISSN":["1941-6636"],"issn-type":[{"value":"1941-6636","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,10]]},"assertion":[{"value":"21 February 2025","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"25 January 2026","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"10 March 2026","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The study protocol was considered not to be subject to the Medical Research Involving Human Subjects Act by the local Medical Ethics Committee of the Radboudumc in Nijmegen, the Netherlands (file number 2022\u201316004). This study was performed in line with the Dutch Code of Conduct for Research Integrity.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics Approval"}},{"value":"All patients provided electronic informed consent prior to start of the survey.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to Participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to Publish"}},{"value":"The authors declare no competing interests.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"65"}}