Eczema patients and their caregivers appear to be missing in action from a role in the development of clinical practice guidelines.
According to a recent systematic review in the British Journal of Dermatology, less than 25% of current eczema guidelines reported patient or caregiver participation.
In response, patient advocates from nine countries including Australia have called for their inclusion in any future guideline development process.
A Perspectives article, also published in the journal said the treatment pipeline for eczema was “flush with new options” and medical societies were in turn updating their guidelines to “reflect the expanding treatment landscape”.
However the “credibility, practicality, and validity” of guidelines developed without the input of patients and caregivers were at risk.
“As patient organisation leaders we are charged with advocating on behalf of the patients and families we serve and ensuring that their voices are reflected in policy decisions and medical care that will affect them,” it said.
“Our position stems from our mission and mandate — but other institutions focused on methodological standards have come to the same conclusion.”
The authors noted organisations including the Institute of Medicine and instruments such as the Appraisal of Guidelines for Research and Evaluation II (AGREE II) recommend that guideline developers incorporate the views of the people who will be impacted by their recommendations.
“For guideline developers with limited experience collaborating with patients and patient groups, it may seem daunting to add this layer to an already time-consuming process. But noteworthy past guideline efforts have successfully incorporated this stakeholder perspective using a variety of doable strategies and methods.”
They gave examples such as the American Academy of Allergy, Asthma and Immunology (AAAAI) and American College of Allergy, Asthma and Immunology (ACAAI) 2021 eczema guidelines which incorporated patients and caregivers perspectives “on the relative importance of outcomes, interpretation of evidence, and practical experience with interventions under consideration.”
“This input directly informed how the systematic review process interpreted critical endpoints to ensure that they were important to patients.”
“It strengthens guideline efforts, improves their acceptance, and is aligned with the Nothing About Us Without Us doctrine which states that no policy should be decided by any representative without the full and direct participation of members of the group(s) affected by that policy.”
“Without patient involvement, guidelines lack legitimacy with the group they are ultimately meant to serve.”
“Moreover, as past successful guideline efforts have discovered, patients and caregivers are critical thought partners in the collaborative journey to integrate research, clinical expertise, and the critically important lived patient experience into recommendations for care and treatment.”
Disclosures: The majority of authors work for patient advocacy groups which are involved in the Global Patient Initiative to Improve Eczema Care, funded in part by Leo Pharma.