Palliative care online: a pilot study on a pancreatic cancer website.

Context: Patients with pancreatic cancer and their families are candidates for palliative care given the physical, emotional, and existential aspects of this serious illness. However, they may not have access to it while pursuing aggressive treatment, or due to physical location or lack of awareness of these services. The Internet may offer a way to overcome these barriers as it is quickly becoming an important health resource and link between patients, families, and health care providers.

Objectives: To determine 1) the number and geographic location of those visiting an interactive webpage where patients and families could access a palliative care nurse practitioner (PCNP); 2) the number and type of questions posted to the PCNP and whether those posting were patients or family members/other; and 3) to evaluate their experience with the PCNP webpage.

Design: Descriptive study.

Results: The PCNP webpage was added to the Johns Hopkins Pancreatic Cancer Center's website and was visited 707 times by 395 unique computer addresses/visitors over the eight-week study period. Forty-eight participants posted 55 questions or sent individual emails to the PCNP. Most questions (85%) had to do with physical issues related to pancreatic cancer and its treatment. Twenty participants completed an online survey. Most survey respondents found the PCNP website helpful, and easy to use, and recommended that the PCNP page be an on-going resource.

Conclusion: This experience provides preliminary evidence that the Internet can be used to offer palliative care-specific information and support to patients and families dealing with pancreatic cancer.