Introduction
Atopic dermatitis (AD) is a chronic, recurrent inflammatory skin disease primarily characterized by intense itching, eczematous skin lesions, and recurrent flare-ups.1 The Global Burden of Disease study shows that the prevalence of AD is approximately 15%–20% among children and 2%–10% among adults, and a significant proportion of patients continue to experience the condition into adulthood.2 Persistent itching significantly impacts patients’ sleep: 40.7% of adults with AD experienced sleep disturbances on at least one night in the past week, and 79.7% had varying degrees of sleep problems in the past three days; the severity of sleep disturbances increases with disease severity.3 Changes in the appearance of skin lesions, combined with the long-term burden of treatment, create physical, psychological, and social stress, requiring patients to not only cope with symptom distress but also to continuously make decisions regarding medical care, medication, self-care, and relapse management.4–6 Recent developments in AD management have placed greater emphasis on incorporating patients’ own concerns into treatment goals. The AHEAD recommendations7 combine shared decision-making with treat-to-target principles, whereby patients select the AD feature(s) that are most troublesome to them, and clinicians subsequently select corresponding patient-reported severity measures, objective severity measures, and treatment targets.
For patients, these choices go beyond simply comparing medical options. Surveys indicate that patients and caregivers wish to participate more actively in treatment decisions, but actual participation remains insufficient.8–10 When patients face options with both benefits and drawbacks, they are prone to decision conflicts if they lack disease knowledge, have unclear value preferences, or lack supportive resources.11 Treatment decision-making may also be shaped by the sociocultural context. A scoping review12 pointed out that shared decision-making is still in its early stages in mainland China, and that patients’ decisional needs have yet to be fully understood.
A recent commentary,13 meanwhile, observed that family harmony and filial piety within Chinese culture can affect how families take part in medical decision-making, while the traditionally hierarchical relationship in healthcare may lead patients to defer to physicians’ authority.
The Ottawa Decision Support Framework (ODSF), put forward by O’Connor et al, offers a theoretical basis for understanding these issues. According to this framework, the key to enhancing the quality of patient decision-making rests on addressing patients’ decision-making needs through suitable decision support tools or measures.11 As a result, there is a valuable opportunity here to figure out how treatment decision support can be better matched to what patients with atopic dermatitis actually need at different stages along the disease journey.
To effectively address this issue, patient journey maps aim to adopt a patient-centered approach, presenting tasks, touchpoints, emotional experiences, pain points, and support needs at different stages of disease management along a timeline.14 Compared to traditional flowcharts, patient journey maps place greater emphasis on real-life experiences and service discontinuities, making them well-suited to reveal how treatment decision-making difficulties arise, evolve, and accumulate during the continuum of care. Patient journey mapping, as a method, has likewise been applied to the AD field internationally. The Eczema Society of Canada developed an Atopic Dermatitis Patient Journey on the basis of interviews and a national survey, in which the experiences of patients from symptom onset and diagnosis through treatment and ongoing disease management were described.15 This work highlighted that the AD care journey is recurrent and does not advance linearly, and it also highlighted the challenges faced by patients and their families throughout disease management.
Nevertheless, it mainly focused on the broader patient experience, with relatively limited attention to how treatment decision-making needs change across different stages of disease management. Treatment preferences and shared decision-making in AD have likewise received growing attention. Understanding patients’ treatment preferences may help inform the development of decision aids that facilitate shared decision-making, accordingly, several decision-support tools have been developed.
For example, evidence-based Decision Cards were designed to help patients compare topical therapies, phototherapy, and systemic treatments for atopic eczema during clinical consultations.16 More recently, an evidence-based decision aid for pediatric AD was developed to support shared decision-making among patients, families, and clinicians, incorporating values clarification and an eczema action plan.17 Nevertheless, existing tools mainly support specific treatment choices or individual clinical encounters, whereas relatively little attention has been paid to how treatment decisions and corresponding support needs evolve throughout the treatment decision-making process.
This study uses a descriptive qualitative research design guided by the Ottawa Decision Support Framework, aiming to outline the treatment decision-making pathways of adult Atopic dermatitis (AD) patients and identify their decision support needs at different stages. Once the information and support patients might need at each stage are clarified, the resulting decision pathway map can provide a reference for setting the content and support priorities of future decision aids.
Subjects and Methods
Study Population
Purposive sampling was used to select AD patients who received inpatient or outpatient care in the dermatology department of a tertiary Grade A hospital in Kunming, Yunnan Province, China, between December 2025 and February 2026. During the sampling process, particular attention was paid to differences in gender, as well as to variations in age and disease duration, while disease severity was reflected by SCORAD scores; this was done to make the information contained in the sample richer.
Inclusion criteria were: (1) Meeting the diagnostic criteria outlined in the Chinese Guidelines for the Diagnosis and Treatment of Atopic Dermatitis (2020); (2) Being at least 18 years of age; (3) Being in good mental health and capable of participating in and completing the interview; and (4) Having a history of atopic dermatitis for at least one year. Disease duration was determined based on participants’ self-reported history during recruitment.
Exclusion criteria were: (1) Severe functional impairment of other organs; (2) Other skin diseases; (3) Inability or refusal to participate in the interview; (4) Pregnancy or lactation.
The sample size of this study was set according to the principle of data saturation, and data collection and analysis were carried out at the same time. By the time the interview reached the 11th participant, no new information related to the research question had appeared any longer, and no new categories had been formed either. On this basis, 2 more interviews were conducted in order to check the degree of saturation, and these 2 interviews likewise brought no new information or categories, which indicated that data saturation had been reached; recruitment was therefore stopped, and 13 participants were ultimately included, including 6 males and 7 females, ranging in age from 21 to 73 years.
To protect the privacy of the participants, the designations P01–P13 were used in place of patient names.
Research Methods
Study Design
Following the steps for constructing patient journey maps,18 this study built a preliminary framework through desk research, further refined this framework using semi-structured interviews and observational data, and invited patient representatives to review the map content, so as to enhance the credibility of the results.
Formation of the Research Team
The research team consisted of four members: one master’s thesis advisor, one dermatology nurse specialist, and two master’s degree candidates.
Desk Research
This research team retrieved relevant clinical information and routine care processes for patients with atopic dermatitis (AD) over the preceding five years from the hospital information system (HIS), with the focus placed on identifying key healthcare-related elements; the information extracted was collectively discussed by the research team and used to build a preliminary framework for the treatment decision-making journey, and this preliminary framework was later refined and supplemented using interview and observational data.
Data Collection and Analysis
Interview Guide
On the basis of retrieving relevant literature, referring to the Ottawa Decision Support Framework (ODSF), and discussions within the research team, this study developed a semi-structured interview guide, after which two patients with AD took part in pilot interviews; these two pilot participants were not included in the final analytic sample, and based on the pilot interviews, the guide was refined into the following interview questions: (1) Please describe the process of managing, seeking medical care, and receiving treatment for your skin condition from the very beginning until now. (2) How much do you know about atopic dermatitis and its related treatments? Where did you primarily obtain this information?
(3) During the management and treatment of your condition, what situations required you to make decisions? How did you approach those decisions at the time? (4) What difficulties or uncertainties did you encounter when making these decisions?
(5) Which people or sources of information influenced your decisions? How did they influence you? (6) Looking back on the entire course of your illness and treatment, what are your feelings and thoughts?
If you needed help to better participate in disease management and treatment decisions, what kind of support would you like to receive?
Data Collection
Interviews were conducted while patients were undergoing disease management and treatment decision-making. Prior to each interview, the researchers explained the study purpose, interview procedures, confidentiality, audio recording, and the participants’ right to withdraw, and obtained informed consent. Interviews were conducted in a semi-structured, one-on-one format, lasting approximately 30–50 minutes each.
Interviews were conducted by researchers trained in qualitative research and took place in the department’s seminar room. The entire interview was audio-recorded and promptly transcribed into written form after the session. During transcription, personally identifiable information—such as names, contact information, and addresses—was removed, and participants were assigned anonymous codes ranging from P01 to P13.
Researchers simultaneously documented patients’ emotional reactions, preserving verbal cues and supplementing the data with descriptions of their gestures and facial expressions.
Data Analysis
The interview data were analyzed using directed content analysis.19 Based on the ODSF theoretical framework and in conjunction with the ODSF Coding Manual11 and prior desk research, a framework for analyzing the treatment decision-making journey of patients was constructed. Specifically, the ODSF was used to guide the identification of treatment decision-making needs and their influencing factors; tasks, pain points, facilitating factors, and emotions from the patient journey map served as the initial analytical dimensions for organizing patient experiences across different stages of disease management. The researchers used NVivo 15 software for data management.
During the analysis process, the researchers first read the interview transcripts repeatedly to familiarize themselves with the overall content; subsequently, based on the predefined analytical framework, they performed initial coding of text relevant to the research questions. Content that fit within the existing framework was categorized accordingly; content that could not be fully explained by the predefined categories but was of significant importance was assigned new codes, thereby supplementing, revising, and refining the original coding framework. By continuously comparing similarities and differences among different participants, different stages of disease management, and different coding categories, the researchers identified relationships between categories until no new significant categories or substantive information emerged.
Finally, the analysis results were integrated into the decision preparation phase, decision formation phase, and decision implementation and redecision phase. A treatment decision-making journey map for adults with AD was constructed and visualized based on dimensions such as tasks, pain points, facilitating factors, emotions, decision-making needs, decision support, and decision quality.
Quality Control
To enhance the study’s credibility, two researchers independently coded a subset of interview transcripts and discussed node naming, theme induction, and the selection of representative quotes. When discrepancies arose, the researchers referred back to the original transcripts to compare the consistency between patients’ specific narratives and theoretical interpretations, reaching consensus through discussion. Throughout the analysis, the researchers engaged in continuous reflection, carefully distinguishing the relationships among patients’ original expressions, the researchers’ interpretations, and the theoretical framework, thereby avoiding the mechanical application of the ODSF to the data.
Participatory Observation
Two research team members used the same observation framework and fixed observation points to conduct participatory observation of four participating hospitalized AD patients. They recorded patient behaviors, identified discrepancies between patients’ subjective statements and their actual treatment decision-making behaviors, and cross-referenced these observations with interview data. Finally, the researchers reviewed the map content together with patient representatives to further refine the patient journey map.
Ethical Considerations
This study was conducted in accordance with the Declaration of Helsinki and was approved by the Ethics Committee of the First Affiliated Hospital of Kunming Medical University (approval No. 2025L381). All participants received a study explanation prior to the interviews and signed informed consent forms.
The written informed consent also included permission to publish anonymized responses and direct quotations from the interviews. Patient privacy was strictly protected throughout the study; interview recordings, transcripts, and analytical data were for the research team’s use only. All patient data in this paper are presented using anonymous codes, and personally identifiable information has been removed.
Results
Demographic Characteristics of Participants
A total of 13 patients with Atopic Dermatitis (AD) were interviewed for this study, designated as P01–P13. Among them, 6 were male, and 7 were female; their ages ranged from 21 to 73 years, with a mean age of (56.1 ± 16.0) years. The duration of illness ranged from 1 to 10 years.
Demographic data are presented in Table 1.Table 1General Characteristics of Participants (n=13)IDDuration of IllnessGenderAge (Years)SCORAD ScoreP011 yearMale7334.5P024 yearsFemale5134.2P032 yearsMale7322.8P046 yearsFemale7274P053 yearsFemale4555.8P061 yearFemale2112.5P072 yearsMale5943.1P084 yearsFemale7246.8P097 yearsMale5651.6P105 yearsFemale5059.3P1110 yearsMale7181.2P123 yearsMale4322.5P136 yearsFemale4371.8Notes: SCORAD, Scoring Atopic Dermatitis; scores range from 0 to 103, with higher scores indicating greater disease severity.
Mapping the Treatment Decision-Making Journey for Adults with Atopic Dermatitis
The treatment decision-making journey map constructed in this study is composed of two parts, namely the horizontal axis, that is, the timeline, and the vertical axis, that is, the task axis; in light of the characteristics of atopic dermatitis (AD), the horizontal axis was divided into three phases, namely the decision preparation phase, the decision formation phase, and the decision implementation and redecision phase, while the vertical axis contains items such as tasks, pain points, facilitating factors, and emotions, and decision-making needs, available decision support, and decision quality were further mapped at key decision points.
This study ultimately identified 26 themes across the four dimensions of tasks, pain points, facilitating factors, and emotions, among which the decision preparation phase had 7, the decision formation phase had 10, and the decision implementation and redecision phase had 9, as shown in Figure 1. Figure 1Treatment decision-making journey map for adults with atopic dermatitis.The infographic is a journey map for atopic dermatitis treatment decisions, divided into three stages: Decision Preparation, Decision Formation and Decision Implementation and Re-evaluation. Each stage includes rows for Actions, Tasks, Emotions, Pain Points, Facilitating Factors, Decision Needs, Decision Support and Decision Quality.
In the Decision Preparation Stage, actions include Symptom Onset, Self-Assessment and Self-Management. Tasks involve assessing the condition, trying self-treatment and seeking medical care if symptoms persist. Emotions include confusion and anxiety.
Pain points are insufficient disease knowledge and poor information quality. Facilitating factors include family encouragement. Decision needs focus on recognizing symptoms and understanding when to seek care.
Decision support involves primary-care physicians and reliable online information. Decision quality assesses symptom identification and understanding of the disease. The Decision Formation Stage involves actions like Attending a Medical Consultation and Learning About Treatment Options.
Tasks include seeking medical care and comparing treatment options. Emotions range from trust to concern. Pain points include insufficient treatment information and increased decisional conflict.
Facilitating factors are professional explanations. Decision needs cover treatment indications and values clarification. Decision support includes dermatologists and inpatient care teams.
Decision quality evaluates understanding of treatment options and alignment with personal values. In the Decision Implementation and Re-evaluation Stage, actions include Implementing the Treatment Plan and Re-evaluation. Tasks involve implementing treatment and adjusting strategies.
Emotions include disappointment and gradual acceptance. Pain points are difficulties in treatment implementation and insufficient support resources. Facilitating factors are experience-based references.
Decision needs focus on medication-related care and treatment adjustment. Decision support involves follow-up clinics and family caregivers. Decision quality assesses self-management ability and long-term treatment adherence.A journey map of atopic dermatitis treatment decisions across three stages with tasks, emotions and supports.
Decision Preparation Phase
Tasks
Self-Assessment
The decision preparation phase begins with the patient’s perception and assessment of skin symptoms. Most patients initially assess their condition based on itching, rashes, dry skin, or worsening skin lesions; however, they do not immediately recognize it as a chronic disease requiring long-term management. Instead, they tend to attribute these symptoms to common dermatitis, allergies, weather changes, or temporary skin discomfort.
P06: “At first, I thought it was just some simple dermatitis, so I bought some medicine, but it didn’t work, and then it got worse”. P07: “At first, I thought it was a UV allergy; it would itch when it got hot. I scratched it every day, and it was especially itchy at night—I couldn’t sleep because of the itching”.
Self-Management Takes Priority
After making an initial assessment, patients often first attempt to manage their symptoms on their own. Common methods include scratching, applying ointments, purchasing over-the-counter medications at pharmacies, buying medications online, or seeking traditional Chinese medicine treatments. Only when symptoms persist, recur, or self-management proves ineffective do patients gradually seek medical care at a hospital.
P01: “I usually scratch when it itches. It itches when my body gets warm, and it also itches when the weather is hot. Scratching makes me feel a little better”.
P02: “At first, I just bought medicine at the pharmacy. Later, big data might have recommended products to me, so I started looking online and actually bought medicine online—and it really did help a bit”.
Pain Points
Insufficient Knowledge of the Disease
Some patients do not understand why AD recurs, nor are they aware of standardized treatment options beyond scratching, applying ointments, or self-medicating. Due to a lack of disease knowledge and awareness of long-term management, patients tend to rely on past experiences or informal sources of information, leading to relatively limited treatment approaches in the early stages. P01: “I do not know where to find relevant information”.
P05: “I do not know what to do; I’ll just follow the doctor’s instructions”.
Distress from Clinical Symptoms
Itching is the most immediate and intense symptom experienced by patients. Because itching affects sleep, daily life, and mood, patients in the early stages focus more on “relieving the itch first” and give less consideration to long-term treatment pathways, relapse prevention, treatment risks, and follow-up management. P01: “When it itches, I cannot sleep at night”.
P02: “At the time, I just wanted the itching to stop”. P10: “I just wanted to be cured so my skin wouldn’t itch anymore”.
Insufficient Quality of Information
Patients’ sources of information include doctors, the internet, pharmacies, fellow patients, and family members; however, this information is often fragmented and lacks systematic structure and consistency. Although some patients obtain information from the internet and the experiences of fellow patients, they find it difficult to determine whether it applies to their own situation. P04: “I didn’t have any exposure to this at home before—I’d never met anyone with this condition.
When I went to another hospital, they gave me some medication, and whenever the itching flared up while I was at home, I’d rush to apply it”. P11: “I listen to others’ experiences and look things up online—whenever I notice a symptom, I search for it and use medication based on what I find online”. P13: “I search on Baidu and have added several online doctors on Douyin”.
Facilitating Factors
Family Encouragement
Some patients reported that family members encouraged them to seek formal medical care when self-treatment was ineffective or symptoms persisted. P02: “My son advised me not to keep buying medicine online and wanted me to go to a regular hospital for examination”. P09: “My child wanted me to come to the hospital for standardized treatment.
I was worried about the distance and cost, but when the symptoms did not improve, I agreed to listen to my child and the doctor”.
Emotions
Insufficient Emotional Support
Itching, sleep disturbances, and symptom recurrence cause patients to experience confusion, anxiety, and a sense of helplessness as early as the decision-making preparation stage. Some patients experience significant negative emotions because they do not understand why the disease recurs or how to effectively manage it. P07: “It itches when I get hot.
I scratch it every day. It’s especially itchy at night—I cannot sleep when it itches, and it’s very uncomfortable”. P13: “At first, it was just on my hands.
I didn’t pay much attention to it back then. Anyway, it just kept coming and going, and I didn’t know what to do”.
Decision Formation Phase
Tasks
Seeking Medical Care
When symptoms worsen, self-management proves ineffective, or the condition recurs, patients begin to seek professional medical help. At this stage, their primary focus shifts from self-diagnosis to seeking medical care, confirming a diagnosis, and obtaining professional advice. P04: “Because it itches, and the itching affects my sleep, I came to the hospital—though it took two weeks just to get an appointment”.
P06: “The ointment didn’t work, so I came to see a doctor”. P08: “Western doctors only prescribe ointments, so I thought I’d try some traditional Chinese medicine. It’s been over a year, and it just kept getting worse, so I decided to combine Western and traditional Chinese medicine”.
P12: “I thought applying some ointment would fix it; I never expected to be hospitalized, but I ended up coming here anyway”.
Understanding Treatment Options
Once in the healthcare system, patients need to understand different treatment options, such as topical medications, moisturizers, hospitalization, systemic therapy, and biologics. However, most patients have limited knowledge of the indications, efficacy, risks, costs, and long-term management requirements for these different options. P03: “I’ve used moisturizers too—the doctor told me to.
Right now, I’m using ointments; I’ve also tried sprays and medicated baths”. P12: “The resident doctor said there’s a wonder drug—that kind of biologic treatment—that needs to be used for half a year, but they just mentioned that one shot of the biologic costs 1000”. P09: “I know biologics can be used, but their efficacy is uncertain”.
Weighing Treatment Benefits
When choosing a treatment, patients are most concerned with “relief from itching”, “a cure”, and “no recurrence”, while also considering side effects, cost, liver damage, drug resistance, and treatment convenience. At this stage, patients enter a phase of comparing treatment options and weighing their benefits. P03: “I tend to choose medications that relieve itching when I apply them”.
P05: “Applying the ointment helps relieve the itching a little; I do not know if there are any downsides. Also, I know that avoiding certain foods might lead to nutritional deficiencies”. P08: “Right now, getting injections helps a bit.
I’m afraid to use moisturizers—my skin is dry, but most of them are scented, and I do not dare apply them even when I’ve scratched my skin raw”. P11: “After treatment, I just want the itching to subside a bit and for it not to recur”. P12: “The benefit I care about most when taking medication is relieving the discomfort, but the downside is that I’m afraid it might damage my liver”.
Pain Points
Insufficient Treatment Information
Although patients have access to some treatment information, they find it difficult to compare the indications, efficacy, risks, costs, and long-term outcomes of different treatment options. Many patients explicitly state that they do not understand the benefits and risks of treatment, or they only know that a certain option “might be effective” without understanding its specific mechanisms of action or conditions for use. P03: “I know the benefit of applying the ointment is that it relieves itching, and the downside is that it damages the skin—using too much can affect the skin.
I do not know anything else”. P12: “I want to try biologics but do not understand them”.
Intensified Decision-Making Conflict
Patients desire both rapid relief from itching and long-term control, yet they worry about treatment ineffectiveness, side effects, financial burden, and recurrence. The trade-offs between different treatment outcomes create significant decision-making conflict for patients. P01: “The injections are too expensive”.
P12: “I’m a bit torn about choosing biologics—I’m not sure if they’ll work”. P13: “My biggest concern regarding efficacy is the fear of recurring flare-ups”.
Reliance on the Physician’s Decision-Making Role
Most patients place a high degree of trust in their doctors and tend to rely on them to decide on a treatment plan. However, “following the doctor’s advice” does not necessarily mean that patients fully understand the treatment plan or have completed value clarification. While relying on their doctors, some patients still express a lack of knowledge, a lack of confidence, and uncertainty about the best choice.
P02: “I just want to follow the doctor’s advice; whatever he thinks is right for me, that’s what I’ll take”. P03: “I do not know either; I’ll just follow the doctor’s advice”. P05: “I’m not really torn about it; I’ll just follow the doctor’s advice”.
P09: “It’s still hard to make a choice; I have to rely on the doctor to decide because I do not understand it myself”.
Influence of Social Opinions
Information from family members, fellow patients, the internet, and pharmacies all influences patients’ choices. Social support can provide emotional and informational support, but when others’ experiences conflict with a doctor’s advice, or when fellow patients’ experiences involve negative outcomes, this may also increase patients’ hesitation and uncertainty. P01: “I tend to listen to my family, but the treatment outcomes of the patients next to me also have an impact”.
P04: “Hearing everyone in the ward using this moisturizer made me consider using it too, but when a patient who had been discharged said this condition cannot be completely cured, my confidence waned”.
Facilitating Factors
Professional Explanation
Some patients reported that explanations from healthcare professionals helped them understand treatment options when making treatment choices. Information concerning treatment effects, safety, and appropriate use provided a reference when patients were uncertain about different treatment approaches. P06: “Some information online made me worry about side effects, but after the doctor explained it, I was more willing to use the medication as instructed”.
P10: “In the end, I will decide based on the doctor’s explanation of the safety and effectiveness”.
Emotions
Variations in Decision-Making Confidence
Patients generally trust their doctors, and medical advice can enhance some patients’ sense of security and confidence in treatment. However, when treatment efficacy is uncertain, the disease is recurrent, or patients lack sufficient knowledge about the condition, they may still experience a lack of confidence in their decision-making. P02: “My confidence comes from the hospital doctors”.
P06: “I do not feel confident because I do not fully understand this disease and do not know what the best course of action is”.
Overestimation of Risks
Some patients worry about infection, cancerous changes, metastasis, or other serious complications. These concerns increase the psychological burden patients face when choosing a treatment plan and also affect their judgment of treatment risks and efficacy. P09: “The last thing I want to happen is to get an infection”.
P10: “I’m afraid of developing other illnesses; I’m afraid of cancerous changes”. P13: “The worst-case scenario would be if something were to change—like the disease spreading elsewhere”.
Decision Implementation and Redecision Phase
Tasks
Implementing the Treatment Plan
Once a treatment plan is established, patients must carry out tasks in their daily lives, such as applying medication, moisturizing the skin, adhering to dietary restrictions, attending follow-up appointments, and undergoing inpatient treatment or biologic therapy. Implementing treatment is not merely a matter of following medical advice; it also becomes a crucial part of the patient’s ongoing assessment and adjustment of their treatment. P04: “Now that I’ve finished my medical visit, I know that if I feel itchy after using topical medication, I should apply it immediately—I shouldn’t let it get worse”.
P12: “The doctor said I shouldn’t eat beef, lamb, or mangoes, so I haven’t eaten any of those”.
Treatment Outcomes Drive Decision-Making
Patients assess whether to continue their current treatment plan based on improvements in their symptoms. When treatment effects are not apparent, patients are prone to wavering and may even consider discontinuing medication, switching treatments, or stopping treatment altogether. P01: “If it doesn’t work, I do not want to continue.
If the topical medication isn’t effective, I do not want to keep using it”.
Relapse-Driven Redecision
Because AD recurs frequently, patients often re-enter the process of seeking information, comparing treatment options, and making treatment choices after a relapse. Relapses lead to a reassessment of previous treatment decisions and force patients to once again face uncertainty and trade-offs. P02: “The treatment does have some effect, but it doesn’t cure the problem completely.
I want to see if there are other options”. P13: “The treatment provides relief, but it’s a constant cycle—it never goes away completely. As soon as it relapses, I want to switch to a method that can solve the problem once and for all”.
Pain Points
Difficulties in Treatment Adherence
Factors such as the inconvenience of applying medication, difficulty caring for lesions on the back, the taste of medications, and daily schedules can all affect patients’ ability to adhere to treatment. Even if a treatment regimen is medically feasible, it may be difficult to sustain due to challenges in daily implementation. P04: “It’s hard to apply it to my back, so I tend to slack off a bit.
Plus, it’s hard to care for the back—I cannot reach it properly, and once I put my clothes on after applying it, it just gets wiped off”. P08: “The herbal medicine tastes so bad; I do not want to drink it anymore”.
Lack of Self-Efficacy
When treatment results are not obvious, or the condition recurs, patients are prone to wavering and may even consider stopping treatment. Uncertain treatment outcomes not only affect adherence but also prompt patients to reevaluate whether their original decision was correct. P01: “I’ve been here for a week and haven’t seen much improvement, so I’m starting to feel like I do not want to stay in the hospital anymore”.
P08: “I’ve been treated for a long time, but I’m still not getting better”. P04: “At first, the medication the doctor prescribed helped a little, but then I got worse again. The results aren’t clear, and I do not know what to do”.
Insufficient Support Resources
Financial pressures, travel distances, difficulties in scheduling appointments, and hospital admission restrictions limit patients’ ability to consistently access medical support and also influence whether they continue treatment, return for follow-up visits, or upgrade their treatment. P09: “We’re from the countryside; it’s not easy to make the trip here. I’m thinking I’ll just apply the ointment myself and get better—the pressure is really getting to me”.
P01: “I do not want to be hospitalized because of financial pressures”. P04: “Getting admitted is also difficult; you have to make an appointment”.
Facilitating Factors
Experience-Based Reference
Previous treatment experiences provided patients with practical reference points for subsequent decisions. Through repeated treatment and recurrence, patients became more attentive to symptom changes and previous treatment responses and used these experiences to judge when to initiate treatment, continue a regimen, or adjust their management strategies. P04: “Now I know that when I start to feel itchy, I need to take it seriously and use the medication early instead of waiting until it gets worse”.
P03: “I used to apply medicine only where it itched. Now I’m considering using it according to the treatment course and continuing to use moisturizer”.
Emotions
Disappointment, Uncertainty, and Exhaustion
Long-term recurrence and uncertain treatment outcomes lead to feelings of disappointment, exhaustion, and uncertainty among patients. Relapse is not merely a medical event; it also triggers patients to reevaluate their past treatment decisions. P13: “I’m afraid it will keep coming back”.
P08: “It feels like it cannot be cured; it’s been a long time”. P04: “I’m afraid it will relapse frequently in the future; I do not know which option is best”.
Long-Term Adaptive Acceptance
After repeated treatments, some patients gradually come to terms with the reality of long-term management and tend to follow their doctors’ advice, enhance self-care, or focus on preventing relapses. At this stage, patients’ decision-making goals gradually shift from “a complete cure” to “timely intervention, standardized care, and reducing relapses”. P04: “I now know that as soon as I feel itchy, I need to take it seriously”.
P05: “How to treat it from here on out is up to the doctor”. P07: “I’ll follow the doctor’s advice for all future treatments”.
Discussion
Decision Preparation Phase: Symptom Distress and Insufficient Disease Knowledge Lead Patients to Passively Enter the Decision-Making Process
This study shows that treatment decision-making difficulties among AD patients begin in the early stages of symptoms, rather than only after a doctor proposes a treatment plan. During the decision-preparation phase, patients first face the challenge of assessing and managing their skin symptoms. Most patients initially attribute symptoms such as itching and rashes to common causes, failing to recognize that AD is a chronic condition requiring long-term management.
Consequently, patients often resort to self-management strategies such as scratching or applying topical ointments in the early stages, turning to professional medical care only when symptoms persist or these measures prove ineffective.
During the decision-preparation phase, patients are at the starting point of disease management but lack disease knowledge, standardized pathways, and informational support, leading to treatment decision-making difficulties. Previous research indicates that long-term control of AD requires continuous assessment of symptoms, quality of life, and treatment experiences, rather than a single evaluation of lesion severity.20 Chinese guidelines emphasize that AD is a chronic, recurrent disease requiring long-term management, including patient education, nursing care, and follow-up.21 Participants, however, often placed their attention on immediate itch relief while paying insufficient attention to long-term management, and this short-term orientation cannot be attributed only to patients’ limited understanding, since routine care, when consultations and treatment discussions mainly revolve around current symptoms, can also reinforce this reactive pattern, so that issues related to long-term management are less likely to be taken into account, and patients are also prone to continuing to make decisions based on previous experience or short-term treatment effects.
Itching is the primary trigger that propels patients into the decision preparation phase. Patients experience itching as a direct and intense sensation, often accompanied by sleep disturbances, anxiety, and a sense of helplessness. Tang Jue et al22 pointed out that AD-related itching is associated with skin barrier dysfunction, immune dysregulation, and environmental factors; the itch-scratch cycle further damages the skin barrier and exacerbates inflammation.
This indicates that patients’ urgent need for “itch relief” in the early stages has a clear physiological basis. An international qualitative study by Wollenberg et al23 also found that itching, skin redness, and dry, flaky skin were the symptoms most frequently reported by patients, who believed that clinicians might underestimate the impact of the disease on their daily lives. Therefore, support during the decision preparation phase should not only emphasize disease names and diagnostic knowledge but also address patients’ most immediate symptom experiences, helping them understand the relationship between recurrent itching and long-term disease management.
This study found that when patients continue repeated self-treatment, or delay seeking care despite persistent symptoms, the role of family members can play a certain beneficial part, and involving family members in basic disease education and guidance on when professional assessment is needed may open up an additional pathway to encourage timely medical care.
Decision Formation Phase: Insufficient Treatment Information and Difficulty Weighing Benefits and Risks Exacerbate Decision Conflict
Once patients enter the healthcare system, the decision-making task shifts from seeking medical care to selecting a treatment plan; however, they often have limited understanding when faced with multiple options. Patients find it difficult to judge the accuracy, completeness, and applicability of treatment information, making information deficiency a major pain point in decision-making.
Decision-making difficulties stem not only from insufficient information but also from patients’ struggles to weigh the value of treatments. Patients prioritize “relief from itching”, “cure”, and “prevention of recurrence” above all else, while simultaneously worrying about risks such as side effects and costs. Research shows that when selecting treatment options, patients with atopic dermatitis comprehensively weigh multiple factors, including efficacy, side effects, and cost.24,25 This aligns with patients’ experience of balancing efficacy, safety, financial burden, and ease of adherence.
Particularly with treatments such as biologics, patients both expect stronger efficacy and worry about costs, treatment duration, safety, and ineffectiveness. This indicates that treatment decision-making in AD is highly preference-sensitive. Patients require decision support to compare options, clarify their preferences, and arrive at actionable choices.
Previous studies have primarily examined treatment choices for AD patients from the perspectives of treatment preferences, shared decision-making, or physician-patient communication. Research by Thibau et al10 and Foster et al26 shows that shared decision-making helps patients select treatment options based on their own values; however, shortcomings still exist in real-world experiences, and facilitating factors such as health literacy and the physician-patient relationship are not fully addressed in actual care settings. This study further found that, in real-world clinical settings, patient decision-making is influenced by information from multiple sources, including physicians, family members, and fellow patients; when information is consistent, it provides support, but when it is inconsistent, it increases hesitation.
Therefore, the key during the decision-making process is to help patients assess the quality of information and connect treatment information with the outcomes they personally value.
It is worth noting that “I’ll listen to the doctor” was a common expression among patients in this study. Patients’ trust in their doctors can reduce the cognitive load of processing information when faced with complex treatment options and can also alleviate anxiety. However, accepting a doctor’s advice does not equate to the patient being fully informed, nor does it imply that shared decision-making has been completed.
A qualitative study by Santer et al27 of caregivers of children with eczema found that their confidence in treatment and level of engagement declined when information provided by different healthcare professionals was inconsistent, treatment recommendations were not fully explained, or caregivers felt that the impact of the disease was not being taken seriously. Blaiss et al28 also noted that chronic, preference-sensitive conditions such as atopic dermatitis are well-suited for shared decision-making, as patients need to simultaneously consider efficacy, risks, impact on daily life, and personal values when weighing different treatment options. This study suggests that, within the Chinese cultural and clinical context, “following the doctor’s advice” can represent trust, but may also stem from a patient’s lack of capacity or undefined preferences.
In this context, clear professional explanations may help bridge this gap. Explaining why a treatment is recommended, its expected benefits and risks, and how it differs from other available options can provide patients with a clearer basis for understanding and comparing treatments rather than relying solely on the recommendation itself.
Therefore, clinical communication should shift from one-way information delivery to identifying treatment decision-making needs. Healthcare providers can proactively inquire about patients’ understanding of treatment plans, their perception of benefits and risks, primary concerns, factors influencing their decisions, cost considerations, and willingness to adjust treatment if efficacy is poor. This helps transform implicit knowledge gaps, value conflicts, and lack of confidence into discussable and addressable issues, thereby enhancing the substantive nature of patient participation in treatment decisions.
Decision Implementation and Redecision Phase: The Burden of Implementation and Experiences with Relapse Drive Patients to Repeatedly Redecide
This study indicates that even after a treatment plan has been established, patients still continue to face decision-making difficulties, and the process of treatment implementation constantly generates new decision-making needs. Patients need to integrate treatment into daily life and, based on symptom changes and treatment effects, decide on their subsequent treatment choices. This indicates that treatment implementation is not simply a matter of following medical advice; it is also a process in which treatment effectiveness is evaluated and new decisions are made.
A key issue present in most patients is the burden of implementation, such as the inconvenience of applying topical medications and difficulties in caring for specific body areas; moreover, factors such as medication experience, lifestyle and healthcare arrangements, financial pressure, and perceived efficacy all constrain patients’ ability to adhere to treatment over time.
This burden has been well documented. Yang Fan et al29 found that home care practices among children with AD are associated with disease severity, indicating that treatment outcomes depend not only on prescriptions but also on whether daily care is properly implemented. Zhang Xiaomin et al30 also pointed out that adherence to skin barrier repair agents is an important issue in practical disease management.
Studies on AD in adults likewise show that treatment adherence itself constitutes a significant burden. Elsawi et al31 found that AD severity and the time spent managing symptoms were closely associated with overall disease burden. A survey in Singapore32 showed that treatment costs, skin care, and home management are the primary burdens, and that financial pressure affects treatment adherence.
These findings corroborate the implementation burden observed in the present study.
Meanwhile, this study found that the new decision-making needs constantly arising during treatment implementation are particularly evident in the case of relapse. Although individual disease trajectories may vary, participants in this study consistently described experiences of recurrent symptoms, treatment adjustments, and reconsideration of previous treatment choices. It can thus be seen that recurrent AD episodes prompt patients to reevaluate their treatment decisions.
In addition, previous treatment experiences may provide patients with practical reference points for subsequent decisions; as patients repeatedly implement and adjust treatments, they may gradually become more attentive to symptom changes and better recognize situations in which further medical advice is needed. The experience accumulated through previous treatment processes may therefore serve as a supportive resource for later treatment choices and redecision-making.
Therefore, decision support for patients with AD should extend to the treatment implementation and redecision phases. Healthcare providers need to offer support in areas such as efficacy and medication guidance, relapse warning and treatment adjustment, and cost explanation and follow-up. In this regard, written eczema action plans may offer a practical approach, as they provide individualized written guidance on treatment strategies and on how to recognize and respond to changes in eczema, thereby addressing some of these needs.33 A systematic review identified 20 written eczema action plans;33 among them, 19 used a stepwise approach to flare management, 17 specified when professional help should be sought, 18 were designed primarily for children, and only three had been evaluated in clinical trials.
In this sense, written action plans may provide more structured guidance for treatment implementation and flare management, although their effectiveness requires further evaluation, particularly among adults with AD.
Overall, the findings across the three stages suggest that the focus of decision support may need to change as patients move through the treatment decision-making process. Existing patient decision aids for AD primarily support the comparison and selection of treatment options,16 whereas the present findings also identify decision-support needs before treatment selection and after treatment implementation, and future decision-support tools could therefore be designed with different emphases according to the stage at which patients encounter a decision.
Study Limitations
This study still has some limitations. First, the respondents all came from a single clinical setting, and the sample size was relatively limited, so whether the results can be generalized requires further validation among patients in different regions, at different disease stages, and in different treatment phases. Second, the interview guide was developed on the basis of the ODSF framework, which helped keep the focus on decision-making needs, but the researchers’ attention to related concepts within that framework may also have been reinforced as a result.
Third, disease duration was determined on the basis of participants’ self-reported disease history, and differences in age at initial onset and subsequent disease trajectories may not have been fully represented in the present sample. Information on different prior treatment regimens and on financial aspects was reported to only a limited extent. Future studies could implement larger-scale and more diverse samples, and collect more detailed information on age at initial onset and treatment history, so that more comprehensive comparisons across patient groups can be made and the findings of this study can be further validated.
Conclusion
Using a patient-centered journey-mapping approach guided by the Ottawa Decision Support Framework, this study mapped the treatment decision-making process of adults with AD. The resulting journey map visualized stage-specific characteristics across decision preparation, decision formation, and implementation/redecision. It organized 26 themes across four empirical dimensions—tasks, pain points, facilitating factors, and emotions—and further mapped patients’ decision-making needs, available decision support, and decision quality at key decision points.
The findings show that treatment decision-making difficulties arise not only from limited disease knowledge, but also from the combined effects of immediate symptom-relief needs, long-term treatment trade-offs, outcome uncertainty, value conflicts, insufficient support resources, and recurrent disease management. At the same time, facilitating factors identified at different stages indicate that patients’ existing interpersonal, professional, and experiential resources may also contribute to treatment decision-making. The ODSF-based treatment decision-making journey map provides a structured basis for aligning decision support with patients’ changing needs across the treatment trajectory, helping clinicians identify when support should shift from facilitating entry into professional care, to enabling informed and preference-sensitive choices, and subsequently to supporting evaluation and adjustment of treatment decisions.