title: Patient and caregiver awareness of pancreatic cancer treatments and clinical trials.
abstract: BACKGROUND
  The poor prognosis of pancreatic cancer has been well established. For many patients, active treatments can improve patient outcomes, such as overall survival and symptom control. Nevertheless, there is evidence that pancreatic cancer is undertreated, even in patients with resectable disease. In addition, although participation in a clinical trial is recommended by current pancreatic cancer treatment guidelines, recent data suggest that patient participation in ongoing trials is below overall target accrual.
  
  
  METHODS
  A survey was prepared and distributed to patients with pancreatic cancer and caregivers of patients with pancreatic cancer by the Pancreatic Cancer Action Network (funding for the survey was provided by Celgene Corporation). The 70-question survey was completed between July 30, 2013, and September 18, 2013, by respondents in the United States. The goal of this analysis was to evaluate patient and caregiver interactions with physicians about pancreatic cancer treatments and participation in clinical trials.
  
  
  RESULTS
  The survey was completed by 184 patients and 213 caregivers (not necessarily paired). Quality of life, extension of survival, and symptom management were identified as the most important concerns among both patients and caregivers. A large majority of respondents (94.9%) reported that the patient followed the physician's treatment recommendation. Approximately 30% of respondents indicated that the diagnosing physician offered treatment options at the time of diagnosis. Among the respondents who indicated that the physician did not offer treatment options at diagnosis, 20.4% stated that no doctor had ever spoken to them about treatment options. Most respondents (83.1%) reported that the patient received chemotherapy for pancreatic cancer. Approximately half of respondents (49.1%) indicated that they had never discussed clinical trials with a physician. Twelve percent of respondents reported that the patient participated in a clinical trial. In those cases, physicians were listed as the primary source of trial information 80.4% of the time. Familiarity with Patient Central (known as "Patient and Liaison Services" at the time of the study), a support service offered by the Pancreatic Cancer Action Network, was associated with higher rates of receiving treatment (P<0.05), searching the Internet for information on clinical trials (P<0.05), and participating in clinical trials (not statistically significant).
  
  
  CONCLUSIONS
  The results of this study suggest that large numbers of patients and caregivers had never had discussions with physicians about pancreatic cancer treatments or clinical trials. The point about trials takes on even greater importance, considering that patients who participate in clinical trials report better outcomes than those receiving the same treatment outside of clinical trials. Increased discussions with patients could potentially increase treatment and trial participation, possibly improving patient- and caregiver-stated priorities of quality of life, extension of survival, and symptom management.
authors.affiliation: 1 Pancreatic Cancer Action Network, Manhattan Beach, CA, USA ; 2 Pancreatic Cancer Action Network, Washington, DC, USA ; 3 Celgene Corporation, Summit, NJ, USA.
authors.forename: Anitra
authors.initials: A
authors.lastname: Engebretson
authors.affiliation: 1 Pancreatic Cancer Action Network, Manhattan Beach, CA, USA ; 2 Pancreatic Cancer Action Network, Washington, DC, USA ; 3 Celgene Corporation, Summit, NJ, USA.
authors.forename: Lynn
authors.initials: L
authors.lastname: Matrisian
authors.affiliation: 1 Pancreatic Cancer Action Network, Manhattan Beach, CA, USA ; 2 Pancreatic Cancer Action Network, Washington, DC, USA ; 3 Celgene Corporation, Summit, NJ, USA.
authors.forename: Cara
authors.initials: C
authors.lastname: Thompson
keywords: Pancreatic cancer; awareness; treatment; trial