Abstract
Background
There are two main coping styles regarding information seeking under medical threat; monitoring (information-seeking) and blunting (information-avoiding). The aim of this study is to (1) determine factors associated with a monitoring or blunting coping style in gastro-intestinal stromal tumour (GIST) patients and (2) investigate its association with psychological distress, cancer-related concerns, health-related quality of life and satisfaction with healthcare.
Methods
In a cross-sectional study, Dutch GIST patients completed the shortened version of the Threatening Medical Situations Inventory to determine their coping style, the Hospital Anxiety and Depression Scale, Cancer Worry Scale, EORTC QLQ-C30 and part of the EORTC QLQ-INFO25.
Results
A total of 307 patients were classified as blunters (n = 175, 57%) or monitors (n = 132, 43%). Coping style was not associated with tumour or treatment variables, but being a female (OR 2.5; 95%CI 1.5–4.1; p= <.001) and higher educated (OR 5.5; 95%CI 2.5–11.9, p= <.001) were associated with higher odds of being a monitor. Monitors scored significantly lower on emotional functioning (mean = 86.8 vs mean = 90.9, p=.044), which is considered a trivial difference, more often experienced severe fear of cancer recurrence or progression (53.0% vs 37.7%, p=.007), and had more concerns about dying from GIST in the future (60.6% vs 47.4%, p=.025). Compared to blunters, monitors were less satisfied with the received healthcare and information, and would have liked to receive more information.
Conclusion
GIST patients with a monitoring coping style experience a higher emotional burden. Additionally, monitors exhibit a greater need for information. Although this need for information could potentially result in fears and concerns, recognising it may also create an opening for tailored communication and information.
Acknowledgments
The authors would like to thank the patient advocacy group ‘contact group GIST’ for their help in the ‘Life with GIST’ study, and Carla Fokkema-Vlooswijk and Esther Derksen-Peters for their support with the recruitment and data collection through PROFILES.
Ethical approval
Ethical approval was obtained from the medical ethical committee of the Radboud University Medical Centre (2019-5888). According to the medical ethical regulations, approval of one ethical committee for survey research is valid for all participating centres.
Consent to participate
Written informed consent was obtained from all individual patients included in the study.
Disclosure statement
No potential conflict of interest was reported by the author(s)
This survey study was partly funded by a research grant from Novartis (grant 006.18). The funders had no role in the design of the study; in the collection, analyses, or interpretation of data; in the writing of the manuscript; or in the decision to publish the results.
Data availability statement
The data that support the findings of this study are available from the corresponding author, OH, upon reasonable request.