The sound of silence: where are the voices of patients in eczema guideline development?
Conflicts of interest: K.C. has received advisory board payments from Incyte and LEO Pharma and is employed by Global Parents for Eczema Research. A.V., A.P., R.M., C.T., M.H., S.M., M.F. and K.Z.T. are employed by organizations that received a subaward from Global Parents for Eczema Research for involvement in the Global Patient Initiative to Improve Eczema Care, which is funded, in part, by LEO Pharma. LEO Pharma had no involvement in the conceptualization or writing of this article. M.P. and A.R. have no conflicts to declare. B.W.M.A. is a patient associate editor of the BJD.
The treatment pipeline for eczema is flush with new options that stand to transform care and quality of life for people who live with eczema. During this time of rapid change, medical societies are updating their clinical practice guidelines (CPGs) to reflect the expanding treatment landscape. However, we are concerned that these much-needed updates will occur without input from the population they are ultimately meant to serve: patients and their caregivers.
A recent systematic review published in the British Journal of Dermatology found that <25% of the current eczema guidelines reported patient or caregiver participation.1 This glaring absence raises questions about the robustness of the CPG development process, and undermines the credibility, practicality and validity of these guidelines.
As patient organization 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. Our position stems from our mission and mandate – but other institutions focused on methodological standards have come to the same conclusion. In 2011, the Institute of Medicine outlined the principles of trustworthy CPGs and highlighted the paramount importance of including external stakeholder input in order ‘to increase the likelihood that practical problems in guideline application will be identified and addressed’ and to ‘increase a sense of involvement or ownership among audiences of the varying guidelines'.2 Likewise, the AGREE II instrument for evaluating CPGs, the World Health Organization and the Guidelines International Network all recommend that guideline developers incorporate the views of individuals impacted by the recommendations, ideally by including patients and their caregivers in CPG development.3 Similarly, the GRADE Working Group4 emphasizes, in their Evidence to Decision framework, the importance of including the patients’ experiences, values and preferences.
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.
For example, the 2007 UK National Institute for Health and Care Excellence paediatric guideline committee for eczema included two patient representatives and a health consumer on the 12-person clinical guideline committee.5 The caregiver representative provided insights that helped the committee decide on recommendations when there was no firm evidence to draw upon. Specifically, her personal experience with managing a child with difficult-to-control eczema influenced the committee’s recommendations regarding under what conditions a referral to a specialist from primary care is warranted. Likewise, a patient representative to the committee that established guidelines for the long-term management of moderate-to-severe adult atopic dermatitis in Italy advocated for the inclusion of pain as a clinical outcome of interest.6 This recommendation was adopted and is in line with the growing recognition of skin pain as a key symptom associated with eczema.7
The soon to be published EuroGuiDerm eczema guideline was developed with three patient or caregiver representatives who participated in the development of the entire guideline from start to finish. Their participation was more than perfunctory – they had equal influence on all recommendations and wrote the Patient Perspective chapter.8
One of the most comprehensive efforts to integrate patient and caregiver input comes from the American Academy of Allergy, Asthma and Immunology and the American College of Allergy, Asthma and Immunology, which together updated guidelines for eczema in 2021. Leaders of this joint effort invited patient organizations, patients and caregivers to be part of the process through survey input, focus groups and participation on a multidisciplinary panel. In total, 23 patients and caregivers contributed to the process by sharing their perspectives on the relative importance of outcomes, interpretation of evidence, and practical experience with the interventions under consideration. This input directly informed how the systematic review process interpreted critical endpoints to ensure that they were important to patients.9
Such examples show that inclusion can and should be part of guideline development. 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. In this era of patient engagement and inclusion, an invitation to parent and patient constituents should be the first step in any future guideline development process for eczema.
Author contributions
Korey Capozza: Conceptualization (lead); project administration (lead); writing – original draft (lead); writing – review and editing (lead). Anne Skov Vastrup: Conceptualization (equal); writing – review and editing (equal). Andrew Proctor: Conceptualization (equal); writing – review and editing (equal). Amanda Roberts: Conceptualization (equal); writing – review and editing (equal). Mario Picozza: Conceptualization (equal); writing – review and editing (equal). Rachael Manion: Conceptualization (equal); writing – review and editing (equal). Cheryl Talent: Conceptualization (equal); writing – review and editing (equal). Marjolaine Hering: Conceptualization (equal); writing – review and editing (equal). Stephanie Merhand: Conceptualization (equal); writing – review and editing (equal). Melanie Funk: Conceptualization (equal); writing – review and editing (equal). Kathy Tullos: Conceptualization (equal); writing – review and editing (equal). Bernd WM Arents: Conceptualization (equal); writing – original draft (equal); writing – review and editing (equal).
