Patient and Caregiver Perceptions on Education and Treatment Needs in Atopic Dermatitis from an International Survey

Abstract

Introduction

Patient education initiatives for atopic dermatitis (AD) improve medication adherence, treatment satisfaction, severity of disease, and quality of life. An international survey was conducted to better understand the journey of diagnosis and treatment, unmet needs, and educational preferences of patients and caregivers for children diagnosed with AD residing in the US, Europe, Japan, and the Gulf region.

Methods

A cross-sectional, anonymous, multilingual online survey was conducted from December 2024–January 2025. Eligible individuals were aged ≥ 18 years and either a patient diagnosed with AD by a medical professional or a caregiver for a child ages 6–12 years with AD.

Results

Of the 1103 survey participants (68% adult patients; 32% caregivers), 56% were from the US, 25% from Europe, 13% from the Gulf region, and 6% from Japan. Over half (61%) found it easy or very easy to find information on AD; however, responses indicated an interest in improved content of available AD education. Almost half (46%) indicated it would be beneficial to have a list of questions to take to their doctor’s appointment, 42% wanted more information about AD triggers, and 40% wanted a way to communicate the impact of AD to their doctor. For new medications, participants wished to understand safety, mechanism of action, duration of treatment, and the possibility of freedom from symptoms.

Conclusion

Patient and caregiver education in AD is essential for improving disease management and often-compromised quality of life. While access to disease information was reasonably high, there is a clear opportunity to improve and refine AD education content and provide actionable, patient-centered tools.

Supplementary Information

The online version contains supplementary material available at 10.1007/s13555-025-01587-9.

Key Summary Points

Why carry out this study?

Empowering patients and caregivers with evidence-based, practical education and tools tailored to patient preferences could enhance adherence, reduce disease burden, and foster better health outcomes globally

This international survey sought to understand the educational preferences of patients and caregivers for children diagnosed with atopic dermatitis (AD)

What was learned from the study?

Participants indicated that finding information on AD was not difficult

Participants expressed an interest in improved educational content, such as more information on AD triggers, and ways to better communicate with their healthcare provider about the impact of AD on their life

When learning about or considering use of a new treatment option, participants were most interested in the treatment’s mechanism of action and safety

Introduction

Atopic dermatitis (AD) is a chronic inflammatory skin disease that affects individuals of all ages, although it is more common in children than adults. Globally, it is estimated that > 103 million children (4.0% prevalence) and 101 million adults (2.0% prevalence) have AD [1]. The symptoms of AD, such as skin pruritus and dry, cracked skin, can be uncomfortable and painful [2]. Surveys of patients have shown that the pain and discomfort of AD symptoms interfere with daily activities, work, school, and sleep, even influencing the clothes patients wear [3–6]. In addition, people with AD are often embarrassed or self-conscious because of their skin condition and face social and internal stigmatism [7]. Because of the physical and psychological impact of AD, patients report a higher prevalence of stress, anxiety, and depression than individuals without AD [3, 8]. The burden of AD is not only limited to patients; caregivers of children with AD experience anxiety and depression and report that their child’s AD substantially interferes with family life, sleep, and work [6, 9, 10]. The financial burden of AD management can be an additional source of worry for patients and caregivers [11].

Given the burden of AD on daily life and emotional well-being, patients and caregivers may seek information on treatments for AD that will help alleviate the burden. Treatments for AD can be quite complex and time-consuming. These may include topical creams and ointments (either over-the-counter, prescription, or both), wet wraps, bleach baths, elimination diets, allergen immunotherapy, ultraviolet light therapy, injectable biologics, and systemic immunosuppressants [12–15]. With such a bewildering and diverse array of treatment options, education efforts for patients and caregivers need to clearly convey these options, along with their benefits and harms. In addition, education resources should also provide information about the disease itself, underlying causes, and triggers of flare-ups.

Healthcare providers may assume that patients and caregivers are well informed about the disease, which can be detrimental to AD management. A lack of patient knowledge about AD pathogenesis and treatments has been shown to be associated with poor AD outcomes [16]. In contrast, implementation of patient education initiatives for AD improves medication adherence, treatment satisfaction, severity of disease, and quality of life [11, 17, 18]. Accordingly, AD guidelines from the US, Europe, Japan, and Saudi Arabia recommend patient education programs along with treatment [19–22]. To provide optimal education resources, a better understanding of patient and caregiver educational preferences and interests for AD is needed. Furthermore, these preferences may vary among diverse geographic regions. Previous research on patient and caregiver preferences for AD information or education have been primarily limited to qualitative studies with small numbers of participants [23–27]. The objective of this large international survey was to better understand the journey of diagnosis and treatment, unmet needs, and the AD-related educational preferences of patients and caregivers residing in the US, Europe, Japan, and the Gulf region.

Methods

Survey Methodology and Eligibility

A cross-sectional anonymous online survey was conducted from December 2024–January 2025 using the Survey Monkey platform. Survey participants were recruited by Global Allergy and Airways Patient Platform through a survey link posted on their website, social media accounts (i.e., Instagram, Facebook, X, and LinkedIn), and research newsletter. Recruitment was also done through the Survey Monkey audience from panels of individuals who have agreed to participate in surveys. The survey and social media recruitment posts were written in English and translated into French, German, Japanese, and Arabic by certified translators (Alboum Translation Services, Arlington, VA). Individuals eligible to take the survey had to be aged 18 years or older in the US, France, Germany, Japan, UAE, or Saudi Arabia and confirm they were either a patient diagnosed with AD by a medical professional or a caregiver for a child ages 6–12 years diagnosed with AD.

Participants were informed that they could skip any questions they preferred not to answer, and they could withdraw from the survey at any time. They were also informed that the information collected from the survey would be used to develop educational materials and might be integrated with information gathered from other global research studies. No personal information that could identify participants was collected. Each link could only be used once per IP address to prevent multiple survey completions by the same individual. Participants did not receive any incentives or compensation for their participation.

Ethical Approval

Before beginning the survey, invited individuals provided their consent to participate. An institutional review board (IRB) exemption for the survey was obtained from a US-based central IRB (BRANY, Lake Success, NY; IRB00010793; 24-65-1643) since the survey research team was based in the US. The approach of receiving local IRB approval for a global survey is based on precedent set by another global patient survey [28]. The IRB exemption was granted under category #2, as detailed in 45 CFR 46.104(d). The survey was performed in accordance with the Declaration of Helsinki.

Survey Characteristics

During the eligibility screening portion of the survey, participants were informed that “Atopic dermatitis (chronic eczema) is a chronic skin condition that causes flare-ups of dry, itchy irritated and inflamed skin.” The survey consisted of 25 questions that assessed participant self-identified age and gender, AD history (e.g., duration, treatment, symptoms), impact of AD on daily life, and AD education resources and interests (Table S1). The survey was pretested by the authors. Reporting of the survey and survey results is in accordance with the Consensus-Based Checklist for Reporting of Survey Studies [29].

Analysis

The goal for survey participation was 520 individuals with AD in the US, 120 individuals with AD each from Germany, France, Japan, and the Gulf region, and up to 250 caregivers of children with AD. Results are descriptive only and are reported as the percentage of participants reporting each response. The denominator for each question was the number of participants who answered the question. Data were analyzed using Survey Monkey analysis tools and Excel. There was no adjustment for non-response to questions. Text responses (n = 513, 86 were in English) were also translated and underwent analysis using the free application WordArt.com, an AI-powered word cloud generator to help visualize key themes.

Results

Participant Characteristics

Of the 1103 survey participants, 68% were adult patients and 32% were caregivers of children with AD. Half of the participants identified as female, 51% of the participants were between the ages of 25–44 years, and 42% lived in an urban area (Table 1). Most (56%) of the participants were from the US, 25% were from Europe, 13% were from the Gulf region, and 6% were from Japan (Table 1).

Table 1.

Demographics and disease characteristics

Characteristic	Survey population N = 1103
Gender, n (%)
Female	542 (49)
Male	537 (49)
Non-binary	9 (< 1)
No response or prefer not to answer	15 (1)
Age, years, n (%)
18–24	143 (13)
25–34	298 (27)
35–44	270 (24)
45–54	211 (19)
55–64	117 (11)
65 +	59 (5)
Prefer not to answer	5 (< 1)
Patient with AD, n (%)	755 (68)
Caregiver of child aged 6–12 years with AD, n (%)	348 (32)
Country of primary residence, n (%)
France	141 (13)
Germany	132 (12)
Japan	67 (6)
Saudi Arabia	51 (5)
United Arab Emirates	92 (8)
United States	620 (56)
Type of residential region, n (%)
Urban (city)	459 (42)
Suburban (near a city)	361 (33)
Rural (village, small town)	217 (20)
Not sure	32 (3)
Prefer not to answer	13 (1)

AD atopic dermatitis

Adult patients and children were relatively new to AD; 43% of participants indicated that they or their child had been diagnosed with AD within the last 2 years and 23% within 3–5 years. Diagnosis of AD was most commonly by a dermatologist (48%) or a primary care physician (27%). Participants indicated that they or their child regularly used over-the-counter creams and ointments (48%), soothing baths and gentle soap (45%), and prescription creams and ointments (38%) to treat their AD; 17% used injectable biologics as regular treatment, and 16% had used a biologic in the past (Figure S1). Non-pharmacological techniques to manage AD (i.e., relaxation, counseling, and behavior modification and biofeedback for scratching) were reported by 31% of participants. There were no notable differences in reported treatments for adult patients versus children or by country. Individuals from urban areas reported using AD treatments more regularly than individuals from rural areas (e.g., over-the-counter creams and ointments, 58% vs 40%, respectively; wet dressings, 30% vs 16%, respectively).

Impact of AD on Daily Life

A total of 95% of participants reported they or their child experienced symptoms a few times a year or more frequently, with 50% (52% of adult patients; 45% of children) reporting daily to weekly symptoms (Fig. 1a). Symptoms that were regularly experienced were dry, cracked skin, pruritus, rash and other skin manifestations; many symptoms were more likely to occur during a flare-up (Figure S2). When asked about the difficulty they experienced in managing AD symptoms, 46% of participants (46% of adult patients, 47% of caregivers) reported finding it difficult or very difficult (Fig. 1b).

Fig. 1.

Participants reported a frequency of their (or their child’s) atopic dermatitis symptoms and b level of difficulty in managing their (or their child’s) atopic dermatitis (n = 1090 responded)

Many participants indicated they or their child had experienced a flare-up that required an emergency department visit (25% of patients and children), urgent care visit (37% total; 32% of patients, 47% of children), hospitalization (18% total; 17% of patients, 21% of children), or oral corticosteroid (29% total; 30% of patients, 27% of children). The proportion of participants from urban areas who had experienced a flare-up that required an emergency department visit was nearly double the proportion for participants from rural areas (33% vs 17%, respectively).

Participants spent considerable time thinking about their or their child’s AD (62% reporting constantly or at least once a week) and were clearly impacted by the disease, citing anxiety (46%), fatigue (31%), getting good quality sleep (29%), depression (28%), and ability to work (27%) as the top affected aspects of daily life (Fig. 2). The impact of AD on daily life was similar between adult patients and caregivers (Fig. 2), among participants from different countries, and between participants living in urban or rural areas.

Fig. 2.

Percentage of participants reporting aspects of daily life affected by their (or their child’s) atopic dermatitis (n = 1087 responded). Participants could select multiple options

AD Education Preferences and Interests

Most (78%) participants were aware that AD is a chronic condition, and many (55%) had received information about AD or AD treatments in the past 12 months from a specialist (e.g., dermatologist, allergist, immunologist), a primary care provider (49%), and internet websites (29%; Fig. 3). More than half (61%) of participants found it easy or very easy to find information on AD (Figure S3). However, responses also indicated an interest in improved content of available AD education (Fig. 4). To make interactions with their healthcare provider easier or help improve their ability to manage AD, 46% of participants indicated they would find it beneficial to have a list of questions to take to their doctor’s appointment, 42% wanted to know more about AD triggers, and 40% wanted a way to communicate to their doctor the impact of AD (Fig. 4). There were no notable differences in AD education preferences and interests between adult patients and caregivers, by country, or between participants living in urban or rural areas.

Fig. 3.

Percentage of participants reporting their source of information about atopic dermatitis or atopic dermatitis treatments in the last 12 months (n = 1087 responded). Participants could select multiple options. AD atopic dermatitis

Fig. 4.

Information desired by participants that would make interactions with their health care professional (HCP) easier or help improve their ability to manage atopic dermatitis (AD) (n = 1077 responded). Participants could select multiple options

When asked about expectations related to new medications, over 50% of participants wished to understand safety, mechanism of action, and duration of treatment (Fig. 5a). Similarly, participants prioritized education on mechanism of action (54%) and safety and side effects (53%) as the most important factors in determining if they would try a new AD drug (Fig. 5b). For new medications, a higher proportion of participants from urban areas expected and prioritized information on mechanism of action compared with those from rural areas (Figure S4a and Figure S4b). When asked to put what long-term control of chronic AD would mean to them into their own words, 513 participants expressed a variety of words and phrases related to physical and mental health. The most common words and phrases are shown in Fig. 6: freedom, relief, less itching, less pain, less flare ups, clear skin, confidence, peace of mind, normal life, and control.

Fig. 5.

a Information desired by participants about a future treatment that could provide long-term control of atopic dermatitis or prevent flare-ups and b information or characteristics that would make a participant consider trying a newly approved treatment for atopic dermatitis (n = 1082 responded). Participants could select multiple options. AD atopic dermatitis

Fig. 6.

Word cloud compiled from participant answers to “In your own words, what would long-term control of chronic atopic dermatitis (AD) mean to you?” (n = 513). Word size reflects the frequency of occurrence within participant narratives. Larger words indicate higher mention frequency

Discussion

This large international survey provided an opportunity to gain insight into the AD education needs and preferences from both the patient and caregiver perspective and among various global geographic regions. At least half of the survey participants had received information on AD or AD treatments within the last year, and they indicated that finding information on AD was not difficult. To better communicate with their healthcare provider about AD management, many participants desired a list of questions they should ask and a way to express the impact of AD on their life. Participants also wanted more information on AD triggers. When learning about or considering use of a new treatment option, participants were most interested in how the treatment works (mechanism of action) and its safety. The burden of disease and AD education preferences were similar between patients and caregivers of children with AD. The burden and preferences were also consistent among participants from the US, Europe, Japan, and the Gulf region, despite these geographic areas representing very diverse cultures and healthcare systems. Participants living in urban areas tended to receive more regular AD treatments, which may be related to a greater severe disease impact (or perception of greater impact) as more of them reported visiting the emergency department for skin-related issues compared with participants who lived in rural areas. Participants from urban areas were also more interested in understanding the mechanism of action for a new AD treatment compared with those from rural areas. The survey did not probe educational background, so the reason for those different interest levels is unclear.

AD is a complex disease that can require multiple treatments. The benefits of educating patients on AD disease mechanisms and treatments are recognized by clinical organizations, and patient education is therefore a part of the recommended treatment plan [19–22]. However, patients and caregivers have expressed frustration at having insufficient information about AD and being unable to find information relevant to what they want to know [24, 25, 30]. There have been many studies involving AD education initiatives with diverse methods, including one-on-one sessions between healthcare providers and patients/caregivers [31, 32], group education programs [33–35], written materials [36, 37], videos [36], and online training [38]. Regardless of the communication methods used, an effective patient and caregiver education resource should include not only what the patient or caregiver needs to know but also what they most want to know.

The results of this survey provided information on patient preferences that were used to develop a patient-centered AD tool that includes a checklist of important questions for patients and caregivers to ask the healthcare provider (Figure S5). This tool can be openly accessed at https://gaapp.org/wp-content/uploads/2025/06/My-AD-Visit-Card-US-Letter.pdf, and clinicians may give it as a handout as a means of communication with patients or caregivers. Patients and caregivers can also be encouraged to access the card through organizations such as GAAPP and to bring it to their clinic visits. Participants also expressed a desire for a better way to communicate the impact of AD on their life to their healthcare provider. This concern by patients that healthcare providers do not truly understand the full impact of their AD on their daily life was also found in a previous international study [39]. Patients in that study expressed concern that existing measures to evaluate AD impact are more for helping the clinician determine severity than for communicating the patient's personal needs [39]. Several patient-reported outcome and quality-of-life assessments have been validated for AD (Table S2) [40], but patients and caregivers may not be familiar with these measures [39]. For example, a new shared decision-making tool developed by experts in partnership with patients and the patient advocacy organization Global Skin is the Patient-Reported Impact of Dermatological Diseases (PRIDD©, https://www.pridd.org/; Figure S5) [41]. PRIDD highlights the impact of skin conditions on different aspects of a patient’s life and is available in multiple languages. The English, German, and French versions can be used as an app or online tool, and healthcare providers may recommend its use prior to an appointment. The ability of PRIDD to improve the quality of patient-provider communications or other aspects of AD management will be the focus of future work that GAAPP aims to conduct in collaboration with Global Skin. Moreover, efforts can be made to direct patients to trustworthy factsheets, videos, and booklets that already exist on patient advocacy organization websites or other sources that address the causes of AD, common triggers, and available treatments.

.

A notable finding from the survey was that participants expressed just as much interest in the mechanism of action of a new treatment as in its safety. Participants want to understand how a treatment works, not just the potential effects. Based on our reading of published educational initiatives, information on treatment mechanisms of action is not typically included as part of the initiative. Patient-friendly videos describing the relationship between AD pathogenesis and mechanisms of specific treatments could fulfill this education need. Links to some existing videos for AD pathogenesis are given in Table S2, and mechanism-of-action videos for some biologic and JAK inhibitors used to treat AD can be found on their manufacturer websites.

This survey is subject to selection bias, as participants had to have access to the internet and be willing to take an online survey. The willingness to participate in the survey demonstrates a willingness to be engaged in AD-related education, and the perceptions and preferences of such a population may not be generalizable to all individuals with AD. In addition, generalizability of the results is limited by the fact that participants were primarily from urban populations and cities, with fewer participants from rural areas and potentially from lower socioeconomic regions. Differences in AD management and educational preferences were noted between participants from urban areas and those from rural areas, suggesting more research is needed on targeting AD education based on types of residential regions and health literacy levels. Another limitation of the survey is that the severity of AD in participants was not assessed using a validated instrument, precluding the ability to link educational needs with the level of disease severity.

Conclusion

Despite globally available effective treatments, the survey results demonstrated a remaining burden of disease in some individuals and an interest in access to improved therapies. Patient and caregiver education in AD is essential for improving disease management and often-compromised quality of life. While access to disease information was reasonably high, there is a clear opportunity to improve and refine AD education content and provide actionable, patient-centered tools. Empowering patients and caregivers with evidence-based, practical education—especially tools that facilitate doctor-patient communication at visits, treatment options, and coping with emotional health and quality of life impacts—could enhance adherence, reduce disease burden, and foster better health outcomes globally.

Supplementary Information

Below is the link to the electronic supplementary material.

Author Contributions

Ruth Tal-Singer, Kristen Willard, Gretchen McCreary, and Mark Luttmann conceived, designed, and supported promotion of the survey. Ruth Tal-Singer was the primary investigator. Kristen Willard was the project manager. Špela Novak, Ghulam Mustafa, and Peter A. Lio reviewed the survey. Mark Luttmann conducted the survey programming and analytics. All authors reviewed the data and contributed to interpretation of the results. All authors critically reviewed and approved the final manuscript.

Funding

This work was supported by GAAPP, supported by an educational grant from Sanofi. The GAAPP research team led the study design, interpretation of the data, writing and reviewing of the manuscript, and the decision to submit the manuscript. GAAPP funded the Rapid Service Fee.

Data Availability

The datasets generated during and/or analyzed during the current study are available from the corresponding author on reasonable request.

Declarations

Conflict of Interest

Ruth Tal-Singer is a retiree and shareholder of GSK and reports personal fees from AstraZeneca, Boehringer Ingelheim, ENA Respiratory, Roche, Vocalis Health, Teva, ImmunoMet, Renovion, Samay Health, GSK, Italy&Beyond, COPD Foundation, Global Skin, and the Global Allergy and Airways Patient Platform. Ghulam Mustafa has nothing to disclose. Peter A. Lio reports being on the speaker's bureau for AbbVie, Arcutis, Eli Lilly, Galderma, Hyphens Pharma, Incyte, La Roche-Posay/L’Oreal, Pfizer, Pierre-Fabre Dermatologie, Regeneron/Sanofi Genzyme, and Verrica; reports consulting/advisory boards for Alphyn Biologics, AbbVie, Almirall, Amyris, Apogee, Arcutis, ASLAN, Astria Therapeutics, Boston Skin Science, Bristol-Myers Squibb, Burt’s Bees, Castle Biosciences, Codex Labs, Concerto Biosci, Dermavant, Eli Lilly, Galderma, Kenvue, LEO Pharma, Lipidor, L’Oreal, Merck, Micreos, MyOR Diagnostics, Pelthos Therapeutics, Regeneron/Sanofi Genzyme, Sibel Health, Skinfix, Soteri Skin, Stratum Biosciences, Sun Pharma, Theraplex, Thimble Health, UCB, Unilever, Verdant Scientific, Verrica, and Yobee Care; has stock options with Alphyn Labs, Codex Labs, Concerto Biosci, Soteri Skin, Stratum Biosciences, Thimble, Yobee Care, and Verdant Scientific; has a patent pending for a Theraplex product with royalties paid; and is a Board member and Scientific Advisory Committee Member emeritus of the National Eczema Association. Mark Luttmann is a retiree and shareholder of GSK and reports personal fees from the COPD Foundation. Kristen Willard, Špela Novak, and Gretchen McCreary declare no competing interests.

Ethical Approval

Before beginning the survey, invited individuals provided their consent to participate. An institutional review board exemption for the survey was obtained from a US-based central IRB (BRANY, Lake Success, NY; IRB00010793; 24-65-1643) since the survey research team was based in the US. The IRB exemption was granted under category #2, as detailed in 45 CFR 46.104(d). The survey was performed in accordance with the Declaration of Helsinki.