Patients with lupus fail to receive sufficient information at diagnosis
ORLANDO — Patients with lupus are not being provided with enough information at physician’s appointments or at diagnosis, leaving them to seek help from health educators, according to a poster presented at the 2019 Rheumatology Nurses Society Annual Conference.
“I am part of the health education team at the Lupus Foundation of America (LFA), and we take a lot of phone calls and emails every month — about 300 to 400,” Lauren Metelski, RN, told Healio Rheumatology.
According to Metelski, a National Needs Assessment survey conducted by the LFA in 2016 found that although two-thirds of patients with lupus seek health information primarily from their health care provider, physicians scored lowest in terms of accessibility and frequency of communication. In addition, 57% of patients reported that their physician had not recommended any resources to them.
“The surveys that we did were important to help us understand a little bit more about who is contacting us and why they are contacting us,” Metelski said. “They were also quality control, to see how good we were doing as health educators and how we could improve.”
To better understand of the LFA’s constituency, learn why patients reach out to health educators, and analyze how they value information and health care services, Metelski and colleagues distributed two surveys to constituents who contacted a health educator, either through email or online, between March 2018 and April 2019. Participants included both English- and Spanish-speaking constituents.
The first questionnaire was a health educator satisfaction survey, which the LFA distributed through a web link at the end of each health educator response email. This survey was sent to approximately 3,000 LFA constituents. The second questionnaire was a “snapshot” survey intended to examine how LFA constituents receive information about lupus and why they contacted a health educator. This was distributed to 1,920 constituents within 3 months after they had made contact with a health educator.
A total of 354 participants, including 326 who answered in English and 28 in Spanish, returned the satisfaction survey, while 271, including 231 in English and 40 in Spanish, responded to the “snapshot.” All responses were anonymous.
According to the researchers, 41% of respondents reported they primarily sought information from their health care provider or clinic, while 35% turned to the internet for answers. Approximately 37%, said they contacted a health educator for an answer to a specific lupus question, while 16% were seeking support. An additional 15% were interested in diagnosis information. Only 1% had contacted a health educator for clinical trial information.
In addition, respondents reported they were highly satisfied with services received from health educators. Participants in general agreed that health educators were sensitive and courteous, clear and easy to understand, responded in a timely way and provided helpful information and resources.
“We found that most people contacted us for a specific health question that they wanted answered,” Metelski said. “Unfortunately, we don’t have a breakdown of what those questions were, so that will be a way to follow-up on this survey for next time.”
“Other reasons for contacting us were that they were seeking support, maybe looking for support groups or just looking to talk to someone after receiving a diagnosis, which is something we do through phone calls,” she added. “Other people were seeking diagnosis information, which would be someone who has lupus symptoms but they don’t have a diagnosis yet, so they are wondering how best to meet with a provider and seek a diagnosis.” – by Jason Laday
Metelski L. What people with lupus want: Results from health education surveys. Presented at: Rheumatology Nurses Society Annual Conference; Aug. 7-10, 2010; Orlando, Florida.
Disclosure: The researchers report funding from UCB Pharma through the Lupus Foundation of America for the 2016 National Needs Assessment survey.