title: Gastrointestinal stromal tumor: psychosocial characteristics and considerations.
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.
authors.affiliation: Behavioral Science Core, Psychosocial Support and Research Program, Pediatric Oncology Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, 10 Center Drive, Pediatric Clinic, Bethesda, MD 20892, USA. wienerl@mail.nih.gov
authors.forename: Lori
authors.initials: L
authors.lastname: Wiener
authors.forename: Haven
authors.initials: H
authors.lastname: Battles
authors.forename: Sima
authors.initials: S
authors.lastname: Zadeh
authors.forename: Carly J
authors.initials: CJ
authors.lastname: Smith
authors.forename: Lee J
authors.initials: LJ
authors.lastname: Helman
authors.forename: Su Young
authors.initials: SY
authors.lastname: Kim
mesh_terms: D000293:Adolescent; D000328:Adult; D000367:Age Factors; D000368:Aged; D001007:Anxiety / Q000453:epidemiology / Q000209:etiology; D001828:Body Image; D002648:Child; D015331:Cohort Studies; D005260:Female; D005770:Gastrointestinal Neoplasms / Q000473:pathology / Q000523:psychology*; D046152:Gastrointestinal Stromal Tumors / Q000473:pathology / Q000523:psychology*; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000453:epidemiology / Q000209:etiology; D013315:Stress, Psychological / Q000453:epidemiology / Q000209:etiology*; D013997:Time Factors; D055815:Young Adult