Leveraging patient-reported outcomes (PROs) in patients with pancreatic cancer: The Pancreatic Cancer Action Network (PanCAN) online patient registry experience

Abstract

Background: The Pancreatic Cancer Action Network (PanCAN) Patient Registry is an online, pancreatic cancer-specific, global registry enabling patients to self-report sociodemographics, disease/management characteristics, and patient-reported outcomes (PROs). We sought to describe the creation, user experience, and research potential of the PanCAN Registry.

Methods: We obtained data to describe (1) the creation of the Registry (questionnaire development, marketing efforts, and regulatory considerations); (2) the user experience (user characteristics and interactions with the registry following inception); and (3) the research potential of the registry (comparing PROs and treatment patterns by age [±65 years] and treatment site [community or academic] for users with de novo metastatic disease).

Results: The Registry was conceived as part of PanCAN's strategic plan for a personalized therapy initiative. PanCAN staff and disease expert consultants developed questionnaires hosted on an electronic PRO platform. Users had the option to include their data in research efforts, and the Registry platform received institutional review board approval. From 7/2015 to 12/2020, 2187 patients visited the registry and 1697 (77.6%) completed at least one survey (median age = 64 years [range: 24-90], 47.9% women, 88.7% White, 34.0% metastatic disease). Among patients with metastatic disease (N = 567), 46.0% were ≥65 years old and 67.5% received treatment at community sites. Patients ≥65 years reported feeling less hopeful about the treatment plan (12.4% vs. 24.3%, p = 0.003), and patients treated at community sites reported more frequent treatment breaks of >2 weeks (58.2% vs. 28.1%, p < 0.001).

Conclusions: Our findings demonstrate the feasibility, usability, and research potential of an online PRO registry for patients with cancer. This description of the PanCAN Registry should inform future registry-building efforts to facilitate standardized PRO reporting and provide a valuable research database.

Clinical trial registration number: Not applicable.

Keywords: PanCAN; pancreatic cancer; patient-reported outcomes; registry.

FIGURE 1

The workflow as it appears to PanCAN Registry users. Individuals enter the PanCAN Patient Registry from the PanCAN.org website or by contacting the Patient Central call center by phone or email (top box). Individuals who enroll in the Know Your Tumor personalized medicine service are offered the opportunity to enroll in the Patient Registry; others are directed to the Registry if they express interest. The Basic, Demographic, and Health assessment surveys are found on the dashboard after data access and privacy settings are selected (center box). The Basic survey must be completed first and Registry users are defined as those that completed the Basic survey. The answers to questions posed in the Basic and Health assessment surveys trigger the appearance of additional surveys on the dashboard if they are relevant for the participant (white boxes). Additional optional surveys appear on the dashboard at appropriate times to avoid overwhelming the participant (bottom box)

FIGURE 2

Heat map of users of the PanCAN Patient Registry within the United States

FIGURE 3

Differences in PROs in patients with metastatic pancreatic cancer based on age and treatment site