Use and assessment of a Palliative Care Nurse Practitioner on a Pancreatic Cancer Web Site

Abstract

Patients with pancreatic cancer and their families struggle with physical and emotional issues. They could benefit from palliative care services, but may not have access to them. The Internet has become an important source of health information and a link between patients, families and health care providers. The purpose of this capstone project was to 1) determine if patients and their families would use a Web page where they could access a palliative care nurse practitioner (PCNP); 2) to identify the palliative care needs of the patients and families who accessed the PCNP; and 3) to determine the helpfulness of the Web page. Participants were recruited to the PCNP Web page from the Johns Hopkins Pancreatic Cancer Research Center’s (JHPCRC) Web site. A mixed method design was used to determine 1) the volume of participation with the PCNP Web page, 2) patient and family member needs, and 3) the usefulness of the Web page. Participants could post their questions to the public comments section of the PCNP Web or send the PCNP a private email. There also was a link to an online survey to gather demographic and evaluative information. The PCNP Web page was visited 650 times by 395 unique individuals over an 8-week period. Participants spent an average of 4 minutes and 4 seconds on the PCNP Web page. Half, 49%, came from a link posted on the discussion board of the JHPCRC Web site. Forty-eight participants posted a total of 55 questions or sent individual emails to the PCNP. The majority were from female family members of patients with pancreatic cancer. The majority of questions (66%) fell into one of the eight domains of palliative care. Of these, most of the questions, 42%, asked about physical aspects of pancreatic cancer with the next largest domain, 11%, being psychological concerns about the illness and the risks of developing it. The other third of questions had to do with non-palliative aspects of pancreatic cancer and its treatment. Twenty participants (5% of total visitors) completed the online survey. Most survey respondents were female, family members, middle-aged, white, and college-educated. Although statistical significance was not achieved, most survey respondents found the PCNP website helpful. It was considered easy to use and participants found information and support there and recommended that the PCNP page should be an on-going resource. Access to a PCNP is an important resource for patients with pancreatic cancer and their family members. The Internet can be used to offer information, support and advice to patients and families dealing with a life-threatening illness.