Atopic dermatitis (AD) is a chronic, recurrent disease. It is characterized by eczema and pruritus and patients often have a personal and/or family history of other diseases such as rhinitis and asthma.1,2 AD is not rare. It has an estimated prevalence of 5% to 15% in children of schoolgoing age and of 2% to 10% in adults.3 Persistence into adult age has been reported in approximately 50% of patients diagnosed with AD in childhood.4 AD, and particularly moderate or severe AD, has a considerable psychological impact and negatively affects patient quality of life.5–7

We designed a qualitative study to explore the experiences of patients with AD, as first-hand accounts can contribute to our understanding of how AD affects everyday lives.

The aim was to determine how AD affects different spheres of adult life to increase awareness among healthcare providers and encourage them to ask their patients about the impact of AD on their lives in order to tailor treatment to individual needs and circumstances and improve patient satisfaction.

The specific aims of this study were to 1) to determine how AD affects adult patients’ lives in different spheres of activity (occupational, family, relational, and social) and 2) to increase the visibility of adult AD.

We studied 14 men and women aged 18 years or older with AD. The patients were selected by simple randomization from among all patients with AD registered with the Dermatology Department at Hospital de Alcañiz in Aragón, Spain. They had all been diagnosed with AD using the classic criteria published by Hanifin and Rajka in 1980.8

The purpose of the study was described to the patients by a dermatologist and they all provided signed informed consent before the study started.

The interviews were conducted by the same interviewer (JCR) on March 21 and 22, 2016. They were video- and audio-recorded and subsequently transcribed verbatim with minimal editing.9 The project was approved by the research ethics committee of Aragon (code PI16/0029, February 24, 2016).

The interview format was semistructured and guided by a simple script (Appendix B supplementary material I). Semistructured interviews provide both the interviewer and interviewee with greater freedom and ensure that the most relevant topics are addressed.10 The interviews lasted for an average of 60 minutes (range, 30-90 minutes).

The data were analyzed using the Framework Method, which is a common technique for the thematic analysis of data in qualitative research.11 The data were coded using the qualitative data and research software program ATLAS.ti version 8 (Scientific Software Development GmbH).12 Coding was manual13 and the results were analyzed and interpreted.

The findings of this study show that personal and psychosocial factors associated with AD have a considerable impact on the lives of adult patients. The patients highlighted the limitations they experienced as a result of their disease, the precautions they needed to take, and the negative experience of having to live with the disease. Other salient issues were emotional burden, social rejection, stigmatization, and negative self-worth.

Our results are consistent with other findings reported for Spain (eg, the DATOP study14) and by other qualitative studies showing the considerable psychological, social, and emotional impacts of AD.9,15

Patient-reported burden is high in AD, particularly in cases of moderate or severe disease.6

Itching is the most common symptom mentioned. Our findings support previous reports of significant associations between itching intensity and quality of life.15

Similarly to the study by Fivenson et al.,7 the main negative economic impact mentioned in our study was the cost of treatment. Other factors mentioned by the patients were the cost of special diets, clothes, and cleaning products, again supporting previous findings.16

Our findings on the social impacts of AD are also similar to those reported previously.6,11

Impaired sleep has a considerable impact on overall quality of life, and sleep disturbance was a source of major concern among our patients.

A lack of restful sleep due to AD increases daytime fatigue and can cause mood disorders that affect social relationships and performance at work or school.5,13,16 Poor sleep quality would help explain some of the results observed in our study.

Visibility of AD lesions can also have a major impact on patient quality of life. In addition to the many other negative aspects reported for AD, skin disfigurement can lead to stigmatization and social rejection, limitations, and avoidance.16 AD can also have negative occupational impacts. A significant increase in indirect costs associated with presenteeism, absenteeism, sick leave, and productivity loss has been reported for patients with AD versus controls.17,18 Increased direct costs related to greater healthcare service utilization have also been reported.15

Particularly worrying issues mentioned by the patients in our series were related to treatment (14%), skin hydration (13%), and the need to visit various healthcare providers; these findings are in agreement with previous reports.5,19,20 Similarly to other authors,21 we explored the beliefs, experiences, and preferences of patients with the aim of improving treatment adherence and ultimately quality of care.

Our study shows that adult patients with AD experience numerous psychosocial difficulties related to the disease in general, its severity and visibility, and itching intensity. Although our sample was small, we found that AD has a negative impact on numerous spheres of activity in adult patients. The disease limited patient activities, required them to take certain precautions, and had a negative impact on self-worth, with some patients even reporting feelings of rejection and stigmatization. A lack of effective treatments and the need to visit several healthcare providers in order to receive a diagnosis also emerged as sources of discontent.

The authors declare that they have no conflicts of interest.