Abstract
Objective
Gastrointestinal stromal tumors (GIST) are very rare, especially within the pediatric population. The National Institutes of Health initiated a multidisciplinary clinic to bring together a worldwide group of healthcare providers with experience in the study and treatment of GIST in order to better understand the disease and to examine whether this is a population at psychosocial risk.
Methods
Seven GIST clinics have been held to date. Participants completed a GIST Psychosocial Assessment containing items covering demographic factors, family stressors, general health, psychosocial concerns, psychiatric history, and self-identified needs. Our sample consists of 60 adult patients (ages 18–66) and 18 pediatric patients (ages 9–17).
Results
Living with pain at least a few days a week was endorsed by those whose self-reported health status was good to excellent (49% of the adult cohort and 25% of the pediatric cohort). Pain was significantly associated with anxiety, difficulties with family relationships, behavior problems, and psychotropic medication use. Body image and appearance concerns were endorsed by over half of the cohort. Post-trauma symptoms were prevalent for those newly diagnosed and those living with GIST for over 15 years.
Conclusions
This is the first study to explore the psychosocial impact of GIST. Individuals living with GIST experience chronic pain, post-trauma symptoms and significant anxiety along with an expressed need for interventions to help them manage their anxiety. Due to the chronic nature of this disease, the GIST population is at risk for long-term psychological distress. Psychosocial interventions in pediatric and adult care settings are offered.
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Acknowledgments
This research was supported by the Center for Cancer Research, National Cancer Institute. We would like to thank the patients and their families who attended the NIH pediatric and wildtype GIST clinic (http://www.pediatricgist.cancer.gov). We also appreciate the support of GIST support group organizations including: GIST Cancer Awareness Foundation, GIST Cancer Research Fund, GIST Support International, and Life Raft Group. We would also like to acknowledge Shannon Dier, MA for her assistance with the data coding and analyses following the first four GIST clinics.
Conflict of interest
The authors do not have a financial relationship with the organization that sponsored this research or receive any royalties or compensation related to the NIH GIST Clinic. This research was supported by the Center for Cancer Research, National Cancer Institute. The opinions expressed in the article are the views of the authors and do not necessarily reflect the views of the Department of Health and Human Services or the United States government. The authors have full control of all primary data and agree to allow the journal to review our data if requested.
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Wiener, L., Battles, H., Zadeh, S. et al. Gastrointestinal stromal tumor: psychosocial characteristics and considerations. Support Care Cancer 20, 1343–1349 (2012). https://doi.org/10.1007/s00520-012-1426-7
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DOI: https://doi.org/10.1007/s00520-012-1426-7