Elsevier

Pancreatology

Volume 15, Issue 6, November–December 2015, Pages 701-707
Pancreatology

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

https://doi.org/10.1016/j.pan.2015.05.471Get rights and content

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.

Introduction

Pancreatic cancer has one of the worst prognoses of any cancer type, with a 5-year overall survival rate for patients with any stage of disease of just 7% [1]. In 2015, an estimated 48,960 patients will be diagnosed with pancreatic cancer [2]. Pancreatic cancer often develops without any obvious early symptoms [2]; the symptoms that may occur include weight loss, abdominal discomfort, glucose intolerance, jaundice, nausea, and vomiting [2]. Furthermore, the symptom profile is dependent on the location of the primary tumor (pancreatic head, body, or tail) [3]. There is no reliable tool for early diagnosis [2], and confirmatory diagnosis is usually based on imaging tests, such as computed tomography (CT) scan, magnetic resonance imaging (MRI), ultrasound (US), or positron emission tomography [4], [5].

Unfortunately, at least partially because of the lack of obvious symptoms, over half of patients will be diagnosed with disease that has already metastasized [1]. The remaining patients will be diagnosed with resectable disease (i.e., surgery is possible) or locally advanced disease that is characterized by a lack of metastatic lesions but is inoperable due to involvement of the tumor with important arteries or veins [1].

Diagnosis of pancreatic cancer is often made by a gastroenterologist due to symptoms such as abdominal discomfort, nausea, and vomiting [6]. Once a diagnosis is made, a patient may be referred to a medical oncologist, radiation oncologist, or surgeon [7]. Because prognosis is highly dependent on disease stage [1], and because active treatments can significantly improve clinical outcomes [8], [9], [10], [11], [12], [13], [14], [15], [16], [17], [18], the lengths of time from symptom onset to diagnosis and from diagnosis to treatment are critical. The unfavorable prognosis that accompanies a pancreatic cancer diagnosis leads to a substantial emotional burden for many patients, which speaks to the importance of support from friends and family [19], [20]. Caregivers provide many levels of support for patients with cancer, including emotional support, as well as more practical functions, such as contributing to treatment decisions, accompanying patients to receive treatments, taking notes during medical appointments, and relaying information from medical appointments to friends and family. Little information is available on patient and caregiver perceptions of pancreatic cancer diagnosis and its impact.

The Pancreatic Cancer Action Network distributed a survey on a wide range of topics to patients with pancreatic cancer and caregivers of patients with pancreatic cancer. The focus of this study was to analyze the results of the survey for information on patient and caregiver perceptions about diagnosis, psychological impact of disease, and the importance of support services.

Section snippets

Methods

The Pancreatic Cancer Action Network prepared a 25-min survey funded by Celgene Corporation. The survey included 70 questions that could be self-administered online (Supplemental Appendix 1). The survey was distributed to patients with pancreatic cancer and caregivers of patients with pancreatic cancer who were either still alive or had died within the past 6 months. The caregivers were not necessarily associated with the patients who completed the survey. The designation of caregiver was

Personal and family history

Most respondents reported not having any personal history of cancer or family histories of pancreatitis or pancreatic cancer. However, 11.3% of respondents did report a previous cancer diagnosis for the patient, most commonly prostate (n = 9), skin (n = 7), and breast cancer (n = 4). A family history of pancreatic cancer was reported by 14.4% of respondents, and a family history of pancreatitis was reported by 5.5% of respondents.

Symptoms and diagnosis

The 3 most common symptoms of disease prior to diagnosis were

Discussion

The results of this survey provide valuable real-world insight on perceptions from patients and caregivers about many aspects of living with pancreatic cancer. This study focused on issues associated with diagnosis, psychological impact of disease, and the importance of a support network including caregivers and support services. Examining responses in patient vs caregiver, metastatic vs nonmetastatic, and PALS-aware vs PALS-unaware subsets provided unique and often surprising perspectives.

The

All authors confirm that they meet authorship criteria per ICMJE by contributing to each of the following

  • 1.

    Conception and design, or analysis and interpretation of data

  • 2.

    Drafting the article or revising it critically for important intellectual content

  • 3.

    Final approval of the version to be published

Acknowledgments

The survey was funded by Celgene Corporation. Writing assistance was provided by John McGuire, PhD, MediTech Media, LLC, and funded by Celgene Corporation.

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