The Patient Voice in Atopic Eczema Guidelines: How Do We Make it Standard Practice?

Abstract

Patient and caregiver involvement in developing clinical guidelines is widely recommended. However, among current atopic eczema guidelines, only a minority incorporates the patient perspective. Much of the general guidance on patient involvement can be applied to atopic eczema. However, there are specific factors to consider in order to embed sustainable patient involvement in the atopic eczema guideline development process. These include the selection of patients and caregivers to represent the heterogeneity of the disease and of the patient experience. The psychosocial impact of the disease suggests support requirements that enable patients to be equal partners with other stakeholders. The priorities and feedback of patients  with atopic eczema can differ from those of healthcare professionals and are central to shaping the research and implementation that form part of a guideline cycle. Barriers to patient involvement in terms of resources or healthcare policy need to be addressed so that patients and caregivers can be active participants in developing guidelines that are culturally, racially, socially and geographically appropriate. We suggest that steps can be taken to facilitate patient involvement in patients and caregivers living with atopic eczema and offer a framework to support patient involvement as standard practice in guideline development.

Key Points for Decision Makers

Owing to the high disease burden of atopic eczema, it is vital that clinical guidelines incorporate the patient perspective and reflect the priorities of individuals with the condition. However, only a minority of current atopic eczema guidelines do so.

While much general guidance on patient involvement is applicable to atopic eczema, there are disease-specific factors that require particular attention including its heterogeneity and psychosocial impact. These lead to a need for special consideration in selecting appropriate patients and caregivers and creating a sustainable process that supports them to play an active part in guideline development.

Barriers to patient involvement in atopic eczema also include the capacity of healthcare systems and policy makers in any given geography to develop or adapt appropriate guidelines. All relevant stakeholders need to work together to overcome barriers to patient involvement and ensure the development of guidelines that are culturally, racially, socially and geographically appropriate for the population they serve.

Introduction

In May 2025, the World Health Assembly passed a resolution mandating a global action plan on skin diseases that encompasses prevention, treatment and care, equitable access to services and the integration of skin health into broader health systems [1]. Clinical guidelines are likely to play an important role in the formation and implementation of such a plan, providing evidence-based recommendations that support optimal patient care. In terms of clinical guideline development, patient and caregiver involvement is broadly agreed in standards as an essential element of the development process [2–5]. Alongside this, the patient community advocates for patients to have a voice in the decisions that shape the healthcare they receive [6]. Yet among current atopic eczema (AE) guidelines only a minority has been shown to incorporate patient involvement (PI) [7, 8].

The Value of PI in AE Guidelines

In 2019, an estimated 171 million people globally were living with AE: a disease characterised by itching and scratching, poor sleep quality, occupational limitations, low self-esteem, social isolation, and depression and anxiety [9–12]. When patients and caregivers are involved in guideline development, they bring a first-hand account of the disease, its physical and psychological impact, and the practical adaptations necessary in daily life and of the care they receive. Their views may complement healthcare professional (HCP) experience and the published evidence or may offer insights and perspectives that enable recognition and better understanding of aspects that are not evident to medical specialists [3, 13].

Indeed, the priorities and preferences of patients with AE can differ from those of the clinicians who are treating them [14, 15]. Patients surveyed in the Asia-Pacific region placed greater emphasis on the prevention of exacerbation, minimising adverse treatment effects and improvements in mental health than dermatologists did [14]. Divergent emphases between parents of children with AE and their general practitioners in the UK included a parental focus on the psychosocial impact whereas general practitioners focussed on the appearance of the skin [15]. A guideline developed with PI can take the patient perspective into consideration when forming recommendations. The 2023 Joint Task Force on Practice Parameters (JTFPP) guideline, which was developed with PI, cites patient preference as a factor that shaped several recommendations: against adding topical ruxolitinib over continued usual care alone, for example [8, 16].

It has been suggested that many AE guidelines are not trustworthy [7]. Patient involvement in guideline development can reassure patients, caregivers and HCPs that the guideline was developed with patient interests in mind [3, 17]. Finally, a guideline that reflects lived experience can support the patient’s desire to understand both the benefits and disadvantages of treatment options, so they are able to make informed decisions with their physician [18]. Shared decision making is important in chronic diseases such as AE that require long-term, possibly complex treatment regimes and can have a positive effect on the low patient adherence associated with AE and on patient outcomes [19, 20].

Addressing Barriers to PI

Many of the general standards and guidance on involving patients in guideline development can be applied to AE: the need for a conflict of interest process and patient training and support among others [3, 4, 21, 22]. However, the nature of AE as a disease and some of the barriers to PI in the AE landscape require further consideration. By examining the specific considerations associated with AE, we aim to offer ways of integrating PI into guideline development as widely as possible.

Patient and Caregiver Recruitment

Atopic eczema is clinically heterogeneous with considerable variation in severity and patient experience [23]. While patient representatives may not be able to represent the entire patient population, criteria are required to select appropriate patients to be members of a guideline development group (GDG). The principles of equity, diversity and inclusiveness governed patient selection in the JTFPP guideline and were reflected in a spread of age, ethnicity, geography, eczema severity, treatments and comorbidity among GDG members [8, 24]. Through the Quality Use of Medicines Alliance Eczema Program, Eczema Support Australia likewise ensured diversity among patients and carers—including linguistic, cultural, indigenous and varying eczema experience—when forming the expert working group for the Eczema Management Algorithm and Care Plan (unpublished data). Further criteria might refer to the individual’s research or experiential knowledge [25]. Practical considerations such as travel capability might also be taken into account, as might the ability to communicate clearly and confidently [25]. The Institute of Medicine advocates selecting patients who represent significant subgroups of patients [3]. However, in AE, subgroups may be defined in many ways: age at onset, severity, genetic or immunological differences [23]. It may be beneficial to consider the AE population that the guideline will serve in terms of clinical factors, geography, age, race or cultural background when selecting appropriate patients.

The prevalence of AE is highest in children and young people [9] and the inclusion of their patient experience is an important element in shaping a guideline. The EurGuiDerm, JTFPP and National Institute for Health and Care Excellence (NICE) guidelines include the experience of young patients by engaging parents and caregivers [24, 26, 27]. However, children and young people can be active participants if they are given additional support. The Royal College of Paediatrics and Child Health in the UK has developed training and mentoring programmes to support children, young people and HCPs in working together and offers guidance and resources [28].

A further question is how many patients and caregivers are required in a GDG. The EurGuiDerm included two patients and one caregiver and the JTFPP four patients or caregivers in a core group that worked on the recommendations [24, 26]. To further represent the spectrum of experience in people with AE, the JTFPP recruited a pool of 19 further patients and caregivers as well as patient advocates who responded to questions around the practical management of AE and their priorities on outcomes [24]. This approach facilitated access to a breadth of experience without making the GDG of a size to present logistical challenges. The European League Against Rheumatism, which has long been a leader in advocating for PI in research, including guideline development, suggests that representing the patient perspective as widely as possible lies within the remit of the whole GDG rather than the patients alone [22]. The JTFPP GDG included an indigenous dermatologist whose research has focused on inequity in skin disease among indigenous people [24].

As with other diseases, the input of a patient representative or a core group of patients may be combined with other resources to give a broader view of the patient perspective. The EurGuiDerm guideline panel carried out a narrative review and the JTFPP panel a systematic review, the latter being subsequently published, on the values and preferences of patients and caregivers regarding the management of AE [24, 26, 29]. The use of qualitative studies or of informal unpublished ‘grey literature’ can also supplement the contribution of patients involved in guideline development, and this additional evidence might be suggested by stakeholders early in the process [30]. Patient organisations may be able to carry out qualitative research or surveys that inform the process or to compile a bank of interviews with patients with AE and caregivers that reflect their needs and lived experience. Australian patient and caregiver interviews carried out by the Quality Use of Medicines Alliance Eczema Program revealed confusion from conflicting advice about corticosteroids and a lack of practical support for daily management as well as cultural considerations that could inform guideline recommendations (unpublished data).

These additional sources of information might be particularly useful in situations where patient recruitment is difficult or time and resources for new studies are not available or when adapting existing guidelines to suit a local patient population. Further support may come from the Patient-Reported Impact of Dermatological Diseases (PRIDD): a validated tool that can be used to assess the impact of AE in a given adult population [31]. A further option is to have a pool of patients who are trained in research participation. The European League Against Rheumatism has developed such a network and offers guidance on how this might be done that may be applied to AE [32, 33].

Supporting and Enabling PI

As with any patients and caregivers involved in guideline development, those living with AE require support to facilitate their participation [30, 34]. This includes the provision of role descriptions, training to increase understanding of research methods and clear communication at the outset around expected workload, time and location of meetings [21, 22, 34]. It may be that some patients with AE and their caregivers with the relevant expertise are hindered because of a significant burden of illness. Flexibility in the involvement practices may be required. Atopic eczema patient organisations are well placed to advise on what is achievable for patients with AE or their caregivers when the initial planning is taking place.

The low self-esteem and high prevalence of anxiety associated with AE suggests a need for support that enables patients with AE to be active participants [35]. Perceptions of a power imbalance between patient and medical professional stakeholders can inhibit patients from giving their own views but the requisite training can give the patients confidence to make their voices heard [21, 34]. This may be particularly important in under-resourced countries where patients may have a low awareness of their healthcare rights. Having a designated patient liaison and actively seeking patient input in all panel meetings can support patient participation [24]. Training for other stakeholders in how to best make use of patient expertise may also be beneficial, establishing a ‘willingness to learn from each other’ [21, 22]. Regular opportunities for evaluation by all stakeholders can enable changes to be made as required throughout the development process. The patient contribution should be acknowledged, as it is in the JTFPP, EurGuiDerm and NICE guidelines, including co-authorship if appropriate [8, 22, 27, 33, 36, 37]. These strategies all contribute to the sustainability of PI in AE guideline development, embedding the patient contribution in the core development process from the outset and offering support and facilitation that enables patients and caregivers to be active participants.

PI in Optimising the AE Guideline Development Cycle

Patient knowledge cannot be translated into clinical practice by PI-informed guidelines alone. Patient involvement is also central to the research on which the guideline is based and to the implementation process [38]. Without PI in the research base, a guideline may fail to reflect patient priorities and experience. This was addressed in 2011 by a priority-setting partnership of patients, caregivers and clinicians set up by the James Lind Alliance in order to identify research questions on the uncertainties around the effects of AE treatments [39]. Some of this research has subsequently been carried out with more currently being undertaken by Rapid Eczema Trials, an initiative that itself combines patient, carer, HCP and researcher involvement [40].

Communication between patients, caregivers and HCPs is essential for effective guideline implementation. A joint implementation and dissemination plan between the medical society and patient advocate community may help with access and provision of patient education resources that use plain language to support key guideline recommendations. Establishing a patient feedback loop can serve to address confusion or omissions. Patients and caregivers have reported, for example, that the terms ‘flare control creams’ and ‘moisturising creams’ are more easily understood than ‘steroids’ and ‘emollients’ [41]. Patient feedback may also be of great value when shaping a guideline to suit a specific locality. In this way, patients can take part in a continuous cycle of guideline modification in order to support adherence and improve outcomes.

PI and the AE Guideline Landscape

No Appropriate Guideline

Patient involvement has a key role to play in AE guideline development in many low- and middle-income countries where guidelines designed for patients from different geographies, of different race, ethnicity or cultural background are frequently used. South African, US or European guidelines are used in sub-Saharan Africa, for example, and European or US guidelines in Latin America [42–44]. Yet the appearance and location of lesions in skin of colour differ from those in white skin and appropriate diagnosis and management are needed [45, 46]. The widespread use of traditional and herbal medicines in the treatment of AE, reported in Africa and Brazil, for example, is not referred to in the guidelines used in those countries [47–49].

Locally based patients and caregivers can bring familiarity with the cultural context as well as their experience of symptoms and the treatment provision in their region. The Latin America Allergy, Asthma and Immunology Society multinational guidelines recommend more specific consideration of local epidemiologic, ethnic and socioeconomic issues [11]. Understanding patient use of herbal medicines, for example, may facilitate initiatives to educate traditional healers to refer to a dermatologist. Having locally specific guidelines may also encourage increased guideline use among physicians if the recommendations are more appropriate to their practice. Currently, only around half of practitioners in Africa and Latin America routinely use AE guidelines [44, 45].

Adapting an existing guideline into a living guideline also creates an opportunity for PI if it was previously absent. A group of clinicians in Latin America have proposed the development of living guidelines that are sufficiently adapted to local use in terms of patient characteristics and local healthcare systems [44]. Living guidelines can reflect changes to AE therapy options and practice and allow patients to contribute to a guideline’s local relevance more promptly than in print.

PI in a Guideline Alternative

Atopic eczema is often treated initially in primary care and reports suggest that some primary care physicians find AE challenging to diagnose and manage and are not familiar with the guidelines [35, 50]. An algorithm, a structured step-by-step guide, for mild-to-moderate disease, such as the paediatric AE algorithm devised for use in South Africa, provides simplified practical support for daily primary care practice [43, 51]. This may be of particular value in environments where there is no appropriate guideline and few dermatologists, for example in most African countries where there is one dermatologist for every one to two million people [45]. An algorithm may require less resource and be quicker to produce than a full clinical guideline, but it remains a way of embedding the patient perspective into clinical practice. A concise algorithm can provide easy-to-access information for HCPs and patients. Patient involvement is as important in an algorithm as in a guideline in shaping the recommendations in light of patient preferences and priorities and also in terms of language. When the patient organisation Eczema Support Australia participated in the production of a management algorithm that was informed by the Australasian College of Dermatologists consensus statement, they worked to use language that was accessible to HCPs and patients alike. Use of the term ‘fingertip method’, for example, was replaced by ‘a generous amount’ and the term ‘red’ was not used to describe lesions as it is not applicable to all skin colour [52].

PI, Resources and Political Context

When a lack of resources proves to be prohibitive to PI in guideline development, one approach is to press for the inclusion of patient and HCP perspectives from diverse geographies in international guidelines, thus enabling contextualised guideline recommendations. Resource for this process may be available through international dermatology organisations or national chapters of medical societies. Indeed, time, finance, data or expertise might be sought from local, national or international medical societies, healthcare providers or from patient advocate groups in order to facilitate PI in guideline development. Not all countries have an AE advocacy community but this may be changing [53]. The Democratic Republic of the Congo and Nigeria have recently established AE advocate groups to add to the Eczema Society of Kenya [54–57].

A further step may be to work towards building an awareness among policy makers of the value of PI and more broadly of the impact of AE on individuals and on healthcare provision. Certainly, PI can benefit healthcare providers by aligning resources with patient priorities to lead to more sustainable use of healthcare services [58]. In some Latin American countries, patient advocacy groups have worked to increase awareness of AE and address inequalities in access to care [53]. Patient advocates and HCPs can work to encourage legislative and policy changes that put patient needs at the centre of healthcare provision, making it a requirement that guidelines are developed in collaboration with patients. In Argentina, a patient advocacy group took part in government discussions on AE and participated in the development of a guideline [53]. Legal proceedings in Mexico resulted in the establishment of a National Atopic Dermatitis Day that aimed to improve awareness and encourage social inclusion as well as to guarantee rights to treatment [53].

Call to Action

Individuals with AE and their caregivers are uniquely placed to identify components of care that affect their health outcomes and quality of life. However, it remains the case that many people living with AE are being treated without guideline recommendations that reflect their priorities, that are valid for their skin, or relevant to their patient experience or their cultural or geographical setting. This can be changed. The framework in Fig. 1 summarises key steps in addressing barriers to PI in AE and facilitating patient and caregiver participation in guideline development. The steps suggested and some of the approaches discussed above may also be relevant to disease areas facing similar challenges in terms of PI.

Fig. 1.

Key steps to facilitate patient and caregiver involvement in AE guideline development. AE atopic eczema

There is an urgency to the task. The burden of AE and of inadequately treated AE is considerable for patients, and the prevalence of the disease appears to be on the rise in many parts of the world [59]. Further, given the many AE therapies in development, treatment decisions are likely to become more complex for both patients and HCPs [60]. Research into patient-defined factors that guide therapy choice in different AE clinical subgroups, cultures or ethnicities would be welcome as would studies that examine the effectiveness of PI strategies in AE. In support of the World Health Assembly mandate for a global action plan on skin diseases, we call on all members of the AE community to work together to identify and address barriers to PI, creating a climate where the contribution of patients and caregivers to AE guideline development becomes standard practice.

Declarations

Funding

Financial support was provided by the International Alliance of Dermatology Patient Organizations (GlobalSkin) which covered costs for assistance in writing and editing and provided a grant to ensure the paper was published with Open Access.

Conflict of interest

Bernd Arents, Ncoza C. Dlova and Rachel Ogola have no conflicts of interest that are directly relevant to the content of this article. Korey Capozza has received advisory board payments from Incyte, Amgen, Pfizer and Astria and is employed by Global Parents for Eczema Research. Melanie Funk is the Managing Director of Eczema Support Australia, a national patient organisation that is mentioned in this article. Eczema Support Australia contributed to the development of the Eczema Management Algorithm and Care Plan cited in the paper. The organisation has received grant funding from the International Alliance of Dermatology Patient Organizations (GlobalSkin) to support patient education and advocacy projects, including a grant for activities surrounding World Atopic Eczema Day. Melanie Funk received no personal financial compensation for participation in this work. Mark J.A. Koh has been a speaker for and received financial grants from LEO, Galderma, GSK, Hyphens, Menarini, Ego, Bioderma, Good Pharma, Sanofi, Pfizer, DKSH, Zuellig, Novartis, AbbVie, Lion, L’Oreal/LaRoche Posay, Quoin and FarmaMondo, has received research grants/funding from Galderma, Hyphens, Amryt, Lilly, AbbVie, Aslan, Bioderma, L’Oreal/LaRoche Posay, Rxilient and Dyamed and is the co-founder, director and medical advisor for DermX.AI.

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Author contributions

All authors contributed to the conceptualisation, drafting and review of this article. All authors read and approved the final version.