PanCAN PALS-Patient and Liaison Services: An Innovative Model for Informed Patient Decision-Making, Including Patient Information and Clinical Trials

Approximately 30,300 people will be diagnosed with pancreatic cancer in the United States this year. The 99% mortality rate is the highest of any cancer, and most patients die within 1 year of diagnosis.[1] There are only two drugs approved as a first-line indication for pancreatic cancer patients, and treatment options are very limited. These patients have poor prognoses and few options, and must make decisions in short time frames.

Patients and caregivers receive little direction and guidance from health professionals in treatment and system navigation options, including issues such as diet and nutrition, pain management, and quality of life. The supportive care that patients receive, including patient literature and additional resources, is rarely relevant to pancreatic cancer. In addition, clinical trials are a viable option, yet only 2% to 3% of all adult oncology patients enroll in trials annually.[ 2] No organized process exists that links patients and doctors conducting clinical trials in the United States.[3] More patients than ever before have access to clinical trial information, but they waste valuable time trying to determine the accuracy of the protocol information and gaining access to the trial investigator before their eligibility can even be determined. Thus, patients with pancreatic cancer receive poor supportive care and little guidance in a complex oncology system.

Objectives and Goals

PanCAN's Patient and Liaison Services (PALS) has several objectives: (1) to develop and provide a comprehensive disease-specific program that pro vides information and support throughout a patient's continuum of care, including diagnosis, treatment, and quality of life; (2) to systematically offer realtime information on all aspects of the disease; and (3) to improve the clinical trials system. A further aim is to identify information sharing gaps between patients and the health-care team, and to implement coordination and communication that will lead to more informed patients and better overall patient care.

Scope and Implementation

PanCAN PALS is the first advocacy-driven model for patient services. PALS associates are available for one-on-one case management Monday through Friday via PanCAN's national toll-free number. The PALS program provides disease-specific literature and verified telephone and internet resources. The program also includes evaluation and outcome analysis of patient participation in clinical trials, through extensive interaction and follow-up between PALS, trial sites, health professionals, and patients.

PanCAN is established in its leadership role with pancreatic cancer patients and health-care professionals. PanCAN introduces the PALS program to patients and researchers through the PanCAN newsletter, the PanCAN website, PanCAN TEAM Hope grassroots volunteers, conferences, professional meetings, and presentations, as well as through collaboration with private industry representatives of oncologyand non-oncology-related businesses. PanCAN PALS encourages and facilitates enhanced communication, coordination, and interaction between patients, their families, and health-care professionals to help improve overall quality of care.

References:

1.

Cancer Facts & Figures 2002, p 4. Atlanta, American CancerSociety, 2002.

2.

A Quantitative Survey of Public Attitudes Towards Cancer ClinicalTrials. Robert Comis, MD, et al. www.harrisinteractive.com, October2000.

3.

Report from THE MARCH Research Task Force, 1998.