Cracking, pain, burning, flaking, and bumps on the skin were reported by more than 70% of adolescents, but a smaller proportion of adults. In addition, more adolescents reported to experience skin peeling, scabbing, skin hardening, and hot/warm skin than adult participants. Conversely, scaling was reported by more than 70% of adults, but a smaller proportion of adolescents. Adults reported a number of symptoms that were not reported by any adolescents, namely, skin sensitivity, sensitivity to sun, thickening, tightening, crusting, oozing/weeping, blisters, fissures/lesions, and skin thinning. All but one of these symptoms (skin thinning, which is commonly recognized as an adverse effect of topical steroids) were reported in the literature.
Results from clinical expert interviews confirmed patient findings. Pruritus and erythema were reported by all 5 dermatologists. Patients did, however, report a number of symptoms that were not reported by experts, including roughness, which was reported by more than 70% of the patient sample.
Conceptual saturation of sign/symptom concepts was achieved in adult and adolescent samples, indicating that no further interviews were necessary.
Signs/symptoms reported were generally described to be experienced in “flare-ups” by both patients and dermatologists. The frequency/severity of flare-ups varied between and within patients. Itching was frequently reported to occur together with many other symptoms, particularly redness and dryness. Dryness, flaking, redness, and skin bumps were reported to frequently co-occur. Common triggers/exacerbating factors included the following: scratching, fabrics, topical cosmetics, sweat, water contact, extremes of weather, and stress. The most commonly reported location of signs/symptoms on the body was the flexural regions of the limbs, eyelids, hands, face, and neck.
Impact on Domains of HRQoL
Health-related quality of life concepts reported by patients and clinical experts in the interviews were grouped into proximal and distal HRQoL impacts. The most frequently reported are summarized in Table 2, and all reported impacts are presented in Figure 1.
Mediating Factors and Proximal Impacts. Scratching was reported to be a mediating factor of AD (n = 20/28 adults [71.4%]; n = 15/20 adolescents [75%]), with patients explaining that scratching would moderate the experience of symptoms, such as itch and pain, and the proximal/distal HRQoL impacts experienced as a result of AD. Bodily/physical discomfort was reported only by adults (n = 15/28 [53.6%]), whereas sleep disturbance was the most frequently reported proximal impact for adolescents (n = 16/20 [80%]) but was reported by a smaller proportion of adults (n = 11/28 [39.2%]). However, adults reported to experience tiredness/fatigue more frequently than adolescents (n = 7/28 adults [25%]; n = 4/20 adolescents [20%]). Impact on concentration was reported more commonly in adolescents (n = 7/20 [35%]) than adults (n = 1/28 [3.5%]).
The expert dermatologists highlighted a number of the same proximal impacts and mediating factors as patients, including sleep disturbance (n = 5/5 [100%]), discomfort (n = 3/5 [60%]), and scratching (n = 2/5 [40%]). The clinical experts did not report any impact on concentration or fatigue but did report skin picking as a mediating factor of AD (n = 2/5 [40%]) that was not reported by patients.
Distal Impacts. Adult and adolescent patients reported a range of distal HRQoL impacts associated with AD. Some similarities were demonstrated between adults and adolescents. Psychological impact was most frequently reported for both adults and adolescents (n = 23/28 adults [82.1%]; n = 20/20 adolescents [100%]). Both populations reported experiencing embarrassment about their skin, frustration, and sadness. Adults also reported experiencing anxiety, worry, and self-consciousness about their skin, whereas adolescents reported stress and disgust at their skin. Both populations (n = 10/28 adults [35.7%]; n = 5/20 adolescents [25%]) reported experiencing stigma associated with AD and were bothered by the appearance of their skin.
Both adults and adolescents also reported experiencing limitations in their daily activities because of AD (n = 18/28 adults [64.3%]; n = 16/20 adolescents [80%]). This included impacts on driving due to distraction by symptoms, impacts on household tasks because water/cleaning chemicals exacerbated AD, and impacts on clothing/cosmetic choices. Only adults reported limitations in their food/drink choices, because of perceptions that certain foods (eg, dairy) could exacerbate AD. Adolescents reported limitations playing video games and writing due to AD affecting dexterity and limitations playing with pets due to pet hair/fur exacerbating AD.
Impacts on social activities were frequently reported by adolescents and also reported by adults (n = 8/28 adults [28.5%]; n = 10/20 adolescents [50%]) to include socializing, group activities, dating, and vacations. Sporting activities/swimming were also affected because of water/sweat worsening AD, which was more frequently reported by adolescents. Adults described social isolation, whereas adolescents reported disruption to their social life as a result of frequent treatment application and medical appointments.
Both populations described AD affecting family relationships and friendships with adolescents reporting these concepts more frequently than adults (n = 4/28 adults [14.2%]; n = 12/20 adolescents [60%]). Adults also highlighted impacts on their romantic relationships and sex life including avoidance of showing affection or physical contact.
Adult patients reported impacts of AD on their work (n = 7/28 [25%]), including job restrictions, productivity, and career progression, and on their finances (n = 8/28 [28.6%]), including the costs of treatments and purchasing safe products. Adolescents described the impact of AD on school life (n = 12/20 [60%]), including absence, difficulties wearing school uniform, and not wanting to go to school.
Clinical experts largely confirmed the distal impacts reported by adolescent and adult patients and did not report any additional impacts. In line with patient findings, all 5 clinical experts emphasized the psychological and social impact of AD (n = 5/5 [100%]). Clinical experts did not highlight any financial and physical impacts.
Conceptual saturation analyses were only conducted for HRQoL impacts reported by adults, and saturation was achieved.
A conceptual model (Fig. 1) was developed based on findings from the literature review, patient, and clinical expert interviews. The model was designed to be a reflection of the most relevant and important AD signs/symptoms and impacts for patients. A key has been developed that details which concepts were elicited from adult research (literature review and interviews with clinical experts and adult patients) or from adolescent patients.
This study evaluated the patient experience of AD from a number of different perspectives and summarizes these findings in a conceptual model. This was a rigorous, in-depth qualitative study with a relatively large and diverse sample. Although conceptual models detailing pediatric AD and pruritus exist in the published literature, to our knowledge, this study was the first of its kind to explore the lived experience of AD in both adult and adolescent patients.16,17 In addition, to our knowledge, this is the first qualitative study to document the lived experience of AD in adolescents separately from other pediatric populations. Typically, research with adolescents (aged 11–17 years) is combined with that with younger pediatric patients (aged 0–10 years), for whom the HRQoL implications of AD are quite different.18,19 Published research and the findings reported here indicate that the disease experiences of younger and older pediatric populations can differ substantially as a result of hormonal, social, and emotional changes.20 Therefore, this study gives a unique insight into the adolescent experience of AD and provides evidence of concepts that might support meaningful end points in this population.
The qualitative literature review identified a number of symptoms and impacts associated with AD, which were subsequently used to develop a preliminary conceptual model. However, there was limited in-depth, published, qualitative research conducted specifically in adult and adolescent patients with AD, supporting the value of the prospective interviews.
The findings from the qualitative interviews indicate that adult and adolescent AD patients experience a wide range of impactful symptoms/signs, including itch, redness, dryness, roughness, scaling, and pain—consistent with the published qualitative literature.1,7,21–23 Key signs/symptoms reported by patients are also consistent with concepts assessed by the patient-reported outcome measures most commonly used in AD. For example, symptoms of itching, pain, and bleeding and impacts on sleep are included in both the Patient Orientated Eczema Measure and Skindex-29, and impacts on social life, emotional functioning, and daily activities are well documented in both the Skindex-29 and Dermatology Life Quality Index.1,9,24 Signs/symptoms were reported to be experienced in flare-ups, descriptions of which were consistent with the published qualitative literature.7,25 A number of symptoms/signs were reported to co-occur, emphasizing the broad spectrum and heterogeneity of signs/symptoms in AD.
Scratching was reported to be a mediating factor, affecting the experience of symptoms and HRQoL impacts of AD. Proximal impacts of discomfort and sleep disturbance and distal impacts on psychological functioning and activities of daily living were the most frequently reported, consistent with the published literature and conceptual model of pruritus, and are important contributions to the concept of AD.7,17,21–23,25–27 In particular, a number of published articles reference the clothing limitations and difficulties with housework experienced by AD patients, as well as the embarrassment and anger felt by these individuals about the appearance of their skin.22,23,25 This study also provided deeper insight into impacts on domains of HRQoL for both adults and adolescents, with concepts such as limitations in food and drink choice, tiredness/fatigue, difficulties exercising/playing sports, work restrictions, and the financial burden of treatments, emerging here with greater prominence than in the published literature.
A single conceptual model was developed for adolescents and adults because the elicited concepts were relatively consistent between the 2 populations. Observed HRQoL impact differences are unsurprising based on the differences in adult and adolescent lifestyle. Patients reported more symptom descriptors and HRQoL impacts than clinicians, perhaps highlighting issues that clinicians are less aware of. However, differences may reflect the small clinician sample size and those interviews being more focused on signs/symptoms.
This study had a limited diversity of ethnicities in the adult patient sample, although there was a better range in adolescents. In addition, the patient sample and most clinicians were recruited from the United States; ideally, further research should confirm the cross-cultural relevance of findings. Finally, confounding factors, such as length of time with AD, the relapsing-remitting nature of AD, and the impact of AD treatments were not explored in detail in this study and could have influence on the findings.
Findings from this literature review and in-depth qualitative interviews with clinical experts and adult and adolescent patients supported development of a comprehensive conceptual model documenting the broad range AD signs/symptoms and impacts that are relevant from the patient perspective. The conceptual model can be used to aid understanding of the adult and adolescent patient experience of AD and can be a valuable tool for developing, planning, and evaluating relevant patient-reported outcome measures for clinical trials and practice. This study highlights the range of symptoms and HRQoL impacts experienced by adults and adolescents with AD. To our knowledge, this study was first to explore the lived experience of AD in both adult and adolescent patients, providing valuable insight into the relatively unexplored adolescent experience of AD.
1. Charman CR, Venn AJ, Williams HC. The patient-oriented eczema measure: development and initial validation of a new tool for measuring atopic eczema severity from the patients' perspective. Arch Dermatol
2. Bieber T. Atopic dermatitis. Ann Dermatol
3. Correale CE, Walker C, Murphy L, et al. Atopic dermatitis: a review of diagnosis and treatment. Am Fam Physician
4. Tollefson MM, Bruckner AL. Atopic dermatitis: skin-directed management. Pediatrics
5. Watson W, Kapur S. Atopic dermatitis. Allergy Asthma Clin immunol
6. Akdis CA, Akdis M, Bieber T, et al. Diagnosis and treatment of atopic dermatitis in children and adults: European Academy of Allergology and Clinical Immunology/American Academy of Allergy, Asthma and Immunology/PRACTALL Consensus Report. Allergy
7. Amaral CS, March Mde F, Sant'Anna CC. Quality of life in children and teenagers with atopic dermatitis. An Bras Dermatol
8. Buske-Kirschbaum A, Geiben A, Hellhammer D. Psychobiological aspects of atopic dermatitis: an overview. Psychother Psychosom
9. Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol
10. McKenna SP, Doward LC. Quality of life of children with atopic dermatitis and their families. Curr Opin Allergy Clin Immunol
11. Lasch KE, Marquis P, Vigneux M, et al. PRO development: rigorous qualitative research as the crucial foundation. Qual Life Res
12. Leidy NK, Vernon M. Perspectives on patient-reported outcomes: content validity and qualitative research in a changing clinical trial environment. Pharmacoeconomics
14. Glaser B, Strauss A. The constant comparative methods of qualitative analysis. In: Glaser BG, Strauss AL, eds. The Discovery of Grounded Theory: Strategries for Qualitative Research
. New York: Aldine de Gruyter; 2010:101–116.
16. Chamlin SL, Frieden IJ, Williams ML, et al. Effects of atopic dermatitis on young American children and their families. Pediatrics
17. Silverberg JI, Kantor RW, Dalal P, et al. A comprehensive conceptual model of the experience of chronic itch in adults. Am J Clin Dermatol
18. Chernyshov PV. Stigmatization and self-perception in children with atopic dermatitis. Clin Cosmet Investig Dermatol
19. Campos ALB, Araújo FM, Santos MALD, et al. Impact of atopic dermatitis on the quality of life of pediatric patients and their guardians [in Portuguese]. Rev Paul Pediatr
20. Arbuckle R, Abetz-Webb L. “Not just little adults”: qualitative methods to support the development of pediatric patient-reported outcomes. Patient
21. Finlay AY. Measures of the effect of adult severe atopic eczema on quality of life. J Eur Acad Dermatol Venereol
22. Drucker AM, Wang AR, Li WQ, et al. The burden of atopic dermatitis: summary of a report for the National Eczema Association. J Invest Dermatol
23. Sibbald C, Drucker AM. Patient burden of atopic dermatitis. Dermatol Clin
24. Chren M-M. The Skindex instruments to measure the effects of skin disease on quality of life. Dermatol Clin
25. Howells LM, Chalmers JR, Cowdell F, et al. ‘When it goes back to my normal I suppose’: a qualitative study using online focus groups to explore perceptions of ‘control’ among people with eczema and parents of children with eczema in the UK. BMJ Open
26. Magin P, Heading G, Adams J, et al. Sex and the skin: a qualitative study of patients with acne, psoriasis and atopic eczema. Psychol Health Med
27. Finlay AY. Quality of life in atopic dermatitis. J Am Acad Dermatol
Supplemental Digital Content
© 2019 American Contact Dermatitis Society