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Pancreatology. 2015 Nov-Dec;15(6):701-7. doi: 10.1016/j.pan.2015.05.471. Epub 2015 May 29.

Pancreatic cancer: Patient and caregiver perceptions on diagnosis, psychological impact, and importance of support.

Author information

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.

KEYWORDS:

Caregiver; Diagnosis; Patient; Survey; Symptom; Undertreatment

PMID:
26092655
DOI:
10.1016/j.pan.2015.05.471
[Indexed for MEDLINE]

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