Better grasp of how guidelines develop may help overcome ‘unhelpful,’ ‘outdated’ stigma
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SCOTTSDALE, Ariz. — Understanding how guidelines and recommendations are formed can make them “most helpful” in clinical practice, according to a presentation at the Basic and Clinical Immunology for the Busy Clinician symposium.
“Everyone’s very excited when guidelines come out,” M. Elaine Husni, MD, MPH, vice chair of the department of rheumatic and immunologic diseases at Cleveland Clinic, told attendees. “And then sometimes when you read the chart or the graphs, it’s kind of unknown how we get to these conclusions.”
Husni, who helped form the 2018 psoriatic arthritis treatment guidelines issued by the American College of Rheumatology and National Psoriasis Foundation, began her talk by clarifying that those guidelines are “a full set of recommendations.” Other recommendations issued by the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) involve treatment scenarios, while those put forward by EULAR are “overarching principles and recommendations.”
Husni encouraged the audience to “realize that there are [methodologies] that can be used that differ between guidelines.” Methodologies can involve either “looking at the literature against [Population or Patient, Intervention, Comparison and Outcome (PICO)] questions, comparing one treatment over the other,” as well as a focus on various clinical domains, as in GRAPPA, or on specific populations based on their comorbidities.
She said that people involved in forming guidelines and recommendations “usually always gather stakeholders — experts in the field, whether they are methodologic experts, whether they are content experts.” She added that “now we have patients involved, which I think is very exciting and really adds to our guidelines, as well.”
She acknowledged that sometimes guidelines are not completely clear. While the 2018 ACR/NPF guidelines say that patients with PsA who are naïve to disease-modifying antirheumatic drugs should receive first-line TNF inhibitors, “the patients that you think about when you go home at night are the ones that don’t respond to TNF,” she said.
“Sometimes people will read these guidelines, and it gets a little frustrating because the evidence for other treatment options is not as straightforward as we’d like,” Husni said. “We are still sort of left with that clinical decision making. Usually, it’s a lot of what we are comfortable with in practice [and] the comorbidities that the patient might present themselves with.”
Husni added that lifestyle aspects are also important to bring up “when we have a patient sitting in front of us.”
“Many of these guidelines don’t necessarily go over what we are supposed to do for exercise, nutrition, sleep, mindfulness, as well as social connectedness,” Husni said. “As we talk to our patients, in addition to all the great treatments we have, there are additional things that we can do.”
During her talk, Husni told a story highlighting the imperfect nature of guidelines and recommendations. She described being at an ACR meeting lunch when she overheard “a bunch of fellows” discussing guidelines she had helped develop.
“They were saying how unhelpful they are and how it doesn’t help them practice or do anything,” Husni said. “They said, oh, yeah, and my mentor at wherever, the University of X, also believes that they don’t work, and I don’t know why they publish them every year. By the time they publish, they are outdated.”
She added: “I’m sitting there just hiding my face. And I realized that, you know, a lot of what they say can be true, because by the time we synthesize our information and collectively get together, and they get published, there’s new drugs that come out, and they are not included in the evidence base, and the cycle goes on.”
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Husni ME. Guidelines unveiled: Navigating spondyloarthropathy treatment pathways — Eeny, meeny, miny, moe?. Presented at Basic and Clinical Immunology for the Busy Clinician, Feb. 17-18, 2024; Scottsdale, Arizona (hybrid meeting).
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