Researchers have developed a new online education resource for patients with hepatopulmonary syndrome and their caregivers that they designed using evidence-based criteria to improve self-efficacy and knowledge, available at www.HPScare.com, according to a recently published study.
“We wanted to build a website and an information resource for patients with hepatopulmonary syndrome around the world,” Samir Gupta, MD, MSc, told Healio.com/Hepatology. “This is a rare disease, and with rare diseases there are gaps in knowledge, not only in the general population of patients but even among physicians. As such, primary care and even specialty care don’t always know a lot about this disease and so patients have a lot of questions that go unanswered.”
According to Gupta and colleagues, most previously available websites for information on hepatopulmonary syndrome (HPS) lacked patient-centered focus, used inappropriately advanced language and presented inaccurate or outdated information.
Gupta told Healio that he and his colleagues designed the study following their observation that even after speaking with newly diagnosed patients for over an hour in clinic, they felt that was not enough time to cover all the information and they were unable to find a resource that they felt was suitable for patient needs.
Development included a Google search on June 7, 2016, of subscription-free resources using the term “hepatopulmonary syndrome,” assessing those resources for their health information quality using the DISCERN instrument, analyzing reading levels with the Flesch-Kincaid algorithm, an electronic needs assessment survey administered to patients with HPS at the Toronto HPS Clinic, use of the AMA and Health on the Net Foundation web development guidance, and an electronic self-efficacy/knowledge questionnaire provided to participants before access to www.HPScare.com and one week after access.
Investigators included 21 unique websites in the study that had a mean DISCERN score of 19.9 (range, 9-29) out of 45 and an average reading grade of 16.8 (range, 10-26.9). Seven websites had not updated their content within 5 years and nine websites referenced the content of those seven sites.
Thirty-five participants (20 patients, 15 caregivers) with a mean age of 55.2 years completed the needs assessment survey. Twenty-seven patients had searched online for information about HPS, five of whom had found what they sought.
“I think what was surprising to us was how often people were going out there and looking for online information,” Gupta said to Healio. “As we expected, they were telling us that they didn’t find [information] that they were looking for or they found stuff they couldn’t understand; it wasn’t written in a way that was patient-friendly. Patients also told us what they wanted to see in a website,” which included wanting diagrams, interactive media, information on research and a patient support portal.
Nineteen patients and 15 caregivers completed the knowledge questionnaire. The baseline score was 64.9%, whereas the 18 patients and 12 caregivers who completed testing following exposure to the website improved their scores to 72.7% (P = .015). The website’s DISCERN score was 38.5.
The researchers’ final approach to the website’s design focused on a reading grade level of 8, the average lay population reading level; catering to distinct learning styles by using images, text and video; providing printable resources such as information sheets and referral forms; and references for all information and contributors to aid readers in gauging website credibility and quality.
“I think that our general approach could very much be emulated and make sense for any disease,” Gupta concluded. “It’s not a disease-specific approach. The idea is getting a product out there that responds to patients’ needs and meets criteria for something that’s trustworthy, something that’s updated often, has the right references and contains the right information.” – by Talitha Bennett
Disclosure: The researchers report no relevant financial disclosures.