Beyond Skin Clearance: The Role of Nursing in Caring for Patients Living with Chronic Dermatologic Disease

The therapeutic landscape of dermatology has changed dramatically. Targeted biologic therapies, small-molecule inhibitors, and other novel treatments have created opportunities to achieve levels of disease control that were previously difficult or impossible for many patients with chronic inflammatory skin diseases. Yet clinical improvement does not necessarily capture the full experience of living with a dermatologic condition.

The burden of skin disease extends beyond what can be observed during an examination. In a large European population-based survey of 19,915 adults reporting skin disease, quality of life was substantially affected across multiple dermatologic conditions. About half of participants with acne, alopecia, or chronic urticaria and about 40% of those with atopic dermatitis, psoriasis, or skin cancer reported a modest to extremely large effect on quality of life. Sleep difficulty, fatigue, embarrassment, anxiety or depression, and stigmatization were also frequently reported.¹

These findings underscore an important distinction in chronic dermatologic care: disease severity and disease burden are related, but they are not synonymous.

A patient may have relatively limited body surface area involvement while experiencing severe pruritus, sleep disruption, embarrassment, sexual or interpersonal difficulties, occupational limitations, or substantial treatment burden. Conversely, clinical improvement may not immediately resolve the psychological and social consequences accumulated over years of living with visible disease. Understanding this distinction is fundamental to nursing practice.

The Nursing Perspective: Seeing the Person Beyond the Disease

Nursing has historically approached illness through a holistic framework that considers the physical, psychological, social, environmental, and functional experiences of the individual. Within dermatology, this perspective is particularly relevant because the skin exists at the intersection of health, identity, appearance, comfort, and social interaction.

Clinical measures such as body surface area, Investigator’s Global Assessment, Eczema Area and Severity Index, and Psoriasis Area and Severity Index provide essential information about disease activity. However, these measures cannot independently describe what it means for a particular person to live with that disease.

The nursing assessment therefore asks not only, “How severe is the disease?” but also, “How is this disease affecting this person’s life?” This distinction represents one of nursing’s most important contributions to chronic dermatologic care.

Patient Advocacy and the Patient Voice

Patient advocacy is a fundamental component of professional nursing practice. In chronic disease management, advocacy includes ensuring that patients understand their options, have opportunities to express their goals and concerns, and participate meaningfully in decisions affecting their care.

In dermatology, listening to the patient’s voice may reveal burdens that are not immediately apparent during examination. A patient with atopic dermatitis may be most concerned about sleep rather than visible lesions. A patient with hidradenitis suppurativa may prioritize pain, drainage, intimacy, or the ability to work. A patient with alopecia areata may experience substantial psychological distress despite having no associated physical discomfort. A patient with psoriasis may have clinically limited skin involvement but symptoms suggestive of psoriatic arthritis that have never been discussed.

The nursing role is not simply to speak for patients. Rather, it is to create the conditions in which patients can speak for themselves and to ensure that what they say is incorporated into clinical decision-making.

Therapeutic Patient Education: Beyond Providing Information

Education is frequently described as a nursing responsibility, but effective therapeutic education extends well beyond providing instructions. Therapeutic patient education aims to provide patients and caregivers with the knowledge, practical skills, and coping strategies necessary to manage chronic disease.

A 2021 position statement on nursing in atopic dermatitis emphasized the role of nurses in therapeutic patient education, self-management, adherence, and interdisciplinary care. A contemporary review of specialized dermatology nursing similarly described important nursing contributions to disease understanding, patient education, treatment adherence, and long-term support in moderate-to-severe atopic dermatitis.^2,3

For a patient with atopic dermatitis, prescribing topical therapy is only the beginning. Successful treatment may require understanding how much medication to apply, where and when to apply it, how to integrate treatment into a daily routine, how to manage flares, what adverse effects warrant concern, and what to do when treatment appears ineffective. Practical considerations, including a patient’s range of motion and ability to apply a topical treatment, may also influence whether a prescribed regimen is feasible.

Similarly, initiation of biologic or systemic therapy may require education regarding administration, expectations for response, laboratory monitoring, adverse effects, insurance processes, and the emotional concerns patients may have about escalating treatment. The difference between providing instructions and achieving understanding is clinically meaningful.

Shared Decision-Making and Treatment Adherence

The expanding number of therapeutic options in dermatology makes shared decision-making increasingly important. Treatment selection may involve considerations extending well beyond efficacy data, including route and frequency of administration, laboratory monitoring, reproductive considerations, potential adverse effects, cost, insurance coverage, travel requirements, and treatment burden.

Research among patients with eczema and caregivers demonstrates both a desire for involvement in treatment decisions and an association between shared decision-making experiences and consultation satisfaction.⁴ This reinforces the importance of eliciting patient preferences rather than assuming that the most efficacious option on paper is automatically the best option for an individual patient.

Failure to understand these preferences can contribute to what is labeled “nonadherence.” From a nursing perspective, however, adherence should prompt exploration rather than judgment. Does the patient understand the treatment? Can the patient afford it? Does the regimen realistically fit the patient’s life? Are there physical limitations, such as limited range of motion, that may affect treatment administration? Could travel or storage requirements create barriers to medications that require refrigeration? Is the patient fearful of an adverse effect? Has the patient experienced previous treatment failures that influence expectations? Does the outcome targeted by the clinician match the outcome that matters most to the patient?

These questions transform adherence from a judgment about patient behavior into an opportunity to identify barriers to successful care.

The Longitudinal Relationship

Chronic dermatologic disease rarely follows a linear course. Patients may experience remission, flares, treatment failure, insurance disruptions, adverse effects, changing life circumstances, and evolving treatment goals. Nurses frequently occupy a longitudinal position within this journey.

Specialized dermatology nursing literature emphasizes the value of long-term relationships, realistic treatment expectations, emotional support, education, engagement, and self-management. Continuity creates something clinically valuable: trust.^2,3

A patient who feels comfortable discussing treatment fatigue, embarrassment, sexual health, depression, fear of injections, medication cost, or an inability to follow a complicated regimen may provide information that can fundamentally change the treatment plan. These conversations may not be captured in a disease severity score, yet they can determine whether an otherwise evidence-based treatment succeeds or fails.

Recognizing the Invisible Burden of Visible Disease

Few specialties demonstrate the relationship between physical disease and social identity as clearly as dermatology. Skin disease is often visible to others. Patients may be required to explain their appearance, respond to questions, conceal lesions, alter clothing choices, avoid physical contact, or manage assumptions that their disease is contagious.

Recent research reinforces the magnitude of this burden. In the European burden-of-skin-disease survey, embarrassment in personal and work life, sleep disruption, anxiety or depression, and experiences of rejection or disgust were reported across skin conditions. In hidradenitis suppurativa, greater perceived stigmatization has been associated with worse quality of life, depression, and social anxiety. A multicenter study of 731 patients with hidradenitis suppurativa also found internalized stigma to correlate with disease activity, quality-of-life measures, depression, and pain.^1,5,6

These findings support routine consideration of psychosocial burden as part of dermatologic assessment. The nursing model provides an established framework for doing so.

A Seat at the Table

The value of the nursing perspective should extend beyond the individual patient encounter. If nurses and advanced practice nurses are responsible for helping patients navigate chronic dermatologic disease, their observations should also inform the systems in which dermatologic care is designed.

Nursing representation is valuable in multidisciplinary clinical teams, patient education initiatives, quality-improvement programs, clinical research, guideline development, professional education, advisory boards, and other settings in which decisions affecting patients are made.

This is not because nursing replaces the perspectives of dermatologists, pharmacists, psychologists, researchers, patient advocates, or other members of the health care team. Rather, each discipline sees different dimensions of the patient’s experience.

The nursing perspective contributes a specific question to these discussions: How will this decision affect the person who must live with it?

That question is particularly important as dermatology becomes increasingly sophisticated therapeutically. Scientific innovation should be accompanied by equally sophisticated approaches to understanding the patient experience.

From Disease-Centered Care to Person-Centered Outcomes

The future of dermatologic care should not require choosing between objective clinical outcomes and patient-centered outcomes. Both matter.

Skin clearance matters. Itch matters. Pain matters. Sleep matters. Mental health matters. Relationships matter. Work and school matter. Treatment burden matters. Whether patients believe that their clinicians understand what matters to them also matters.

The goal of chronic dermatologic care should therefore extend beyond treating disease to helping individuals successfully live with, and, whenever possible, beyond, the limitations imposed by their disease. Nurses and advanced practice nurses are uniquely positioned to help bridge the space between these two objectives.

Conclusion

Advances in dermatologic therapeutics have created unprecedented opportunities to improve outcomes for individuals living with chronic skin disease. Yet increasingly effective treatments do not diminish the need for patient-centered care; they make it more important.

Chronic dermatologic disease affects far more than the skin. Its consequences may extend to sleep, emotional health, relationships, employment, finances, identity, and everyday life.

The nursing model brings these dimensions into the clinical conversation through holistic assessment, advocacy, education, shared decision-making, longitudinal support, and attention to the patient’s lived experience.

The role of the nurse in dermatology therefore extends beyond helping deliver treatment. Nurses help ensure that treatment remains connected to the person receiving it. As dermatologic care continues to advance, the nursing perspective deserves not only a role in implementing care but also a voice in shaping it.

References

1. Gisondi P, Puig L, Richard MA, et al. Quality of life and stigmatization in people with skin diseases in Europe: a large survey from the “burden of skin diseases” EADV project. J Eur Acad Dermatol Venereol. 2023;37(suppl 7):6-14. doi:10.1111/jdv.18917
2. Thormann K, Aubert H, Barbarot S, et al. Position statement on the role of nurses in therapeutic patient education in atopic dermatitis. J Eur Acad Dermatol Venereol. 2021;35(11):2143-2148. doi:10.1111/jdv.17487
3. van Os-Medendorp H, Deprez E, Maes N, et al. The role of the nurse in the care and management of patients with atopic dermatitis. BMC Nurs. 2020;19:102. doi:10.1186/s12912-020-00494-y
4. Thibau IJ, Loiselle AR, Latour E, Foster E, Smith Begolka W. Past, present, and future shared decision-making behavior among patients with eczema and caregivers. JAMA Dermatol. 2022;158(8):912-918. doi:10.1001/jamadermatol.2022.2441
5. Singh R, Kelly KA, Senthilnathan A, Feldman SR, Pichardo RO. Stigmatization, a social perception which may have a debilitating impact on hidradenitis suppurativa patients: an observational study. Arch Dermatol Res. 2023;315(4):1049-1052. doi:10.1007/s00403-022-02412-5
6. Bilgic A, Fettahlıoglu Karaman B, Demirseren DD, et al. Internalized stigma in hidradenitis suppurativa: a multicenter cross-sectional study. Dermatology. 2023;239(3):445-453. doi:10.1159/000529194
7. Akoglu G, Yildiz I, Karaismailoğlu E, Esme P. Disease severity and poor mental health are the main predictors of stigmatization in patients with hidradenitis suppurativa. Dermatol Ther. 2021;34(3). doi:10.1111/dth.14910
8. Butt M, Rigby A, Leslie DL, et al. Associations of internalized skin bias with age, adverse psychopathology, and health-related quality of life among patients with hidradenitis suppurativa: a cross-sectional analysis. JAMA Dermatol. 2022;158(4):432-438. doi:10.1001/jamadermatol.2022.0248