title: Pancreatic cancer: Patient and caregiver perceptions on diagnosis, psychological impact, and importance of support.
abstract: OBJECTIVE
  Pancreatic cancer (PC) can have an enormous psychological toll on those affected by it. This study evaluated patient and caregiver perceptions about diagnosis and daily life with PC.
  
  
  METHODS
  The Pancreatic Cancer Action Network (PanCAN) administered a 25-min online survey (funded by Celgene) between July 30 and September 18, 2013 to patients with PC and caregivers whose loved ones were alive or had died within the past 6 months.
  
  
  RESULTS
  There were 397 respondents (all in the US) including 184 patients (81 with metastatic disease) and 213 caregivers (145 with loved ones with metastatic disease); 80% of patients reported having a primary caregiver. Over 90% reported symptoms before diagnosis, the most common of which being acute abdominal pain, pain radiating into the back, and fatigue. Gastroenterologists were the diagnosing physician in 36.3% of cases. The mean duration from symptom onset to diagnosis was 2.4 months. The most common action taken by diagnosing physicians was referral to another physician (57.7%). No treatments were offered for 9% of patients with nonmetastatic disease and 17% of patients with metastatic disease. The most commonly reported caregiver roles were providing support on treatment days and talking to physicians. A greater percentage of caregivers than patients recognized the various roles played by caregivers. Patients aware of the PanCAN Patient and Liaison Services (PALS) program reported fewer negative emotions than PALS-unaware patients.
  
  
  CONCLUSIONS
  This study provides insights into the issues patients and caregivers in the US face and the importance of support services for both.
authors.affiliation: Pancreatic Cancer Action Network, Manhattan Beach, CA, USA. Electronic address: aengebretson@pancan.org.
authors.forename: Anitra
authors.initials: A
authors.lastname: Engebretson
authors.affiliation: Pancreatic Cancer Action Network, Manhattan Beach, CA, USA.
authors.forename: Lynn
authors.initials: L
authors.lastname: Matrisian
authors.affiliation: Celgene Corporation, Summit, NJ, USA.
authors.forename: Cara
authors.initials: C
authors.lastname: Thompson
mesh_terms: D000223:Adaptation, Psychological; D017028:Caregivers / Q000523:psychology*; D003625:Data Collection; D005190:Family / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010190:Pancreatic Neoplasms / Q000523:psychology*; D005791:Patient Care / Q000523:psychology*; D012944:Social Support; D011795:Surveys and Questionnaires
keywords: Caregiver; Diagnosis; Patient; Survey; Symptom; Undertreatment