Anitra Engebretson1, Lynn Matrisian2, Cara Thompson3. 1. Pancreatic Cancer Action Network, Manhattan Beach, CA, USA. Electronic address: aengebretson@pancan.org. 2. Pancreatic Cancer Action Network, Manhattan Beach, CA, USA. 3. Celgene Corporation, Summit, NJ, USA.
Abstract
BACKGROUND/ OBJECTIVES: 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.
BACKGROUND/ OBJECTIVES: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: Catherine E Mosher; Ekin Secinti; Wei Wu; Deborah A Kashy; Kurt Kroenke; Jonathan B Bricker; Paul R Helft; Anita A Turk; Patrick J Loehrer; Amikar Sehdev; Ahmad A Al-Hader; Victoria L Champion; Shelley A Johns Journal: Palliat Med Date: 2022-05-30 Impact factor: 5.713
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Authors: Catherine E Mosher; Ekin Secinti; Kurt Kroenke; Paul R Helft; Anita A Turk; Patrick J Loehrer; Amikar Sehdev; Ahmad A Al-Hader; Victoria L Champion; Shelley A Johns Journal: Pilot Feasibility Stud Date: 2021-04-20