Young adults’ perceptions of living with atopic dermatitis in relation to the concept of self-management: a qualitative study

Abstract

ObjectivesLearning to take control of one’s health is an important part of the transition from adolescence to adulthood. This study aimed to explore young adults’ perceptions of living with atopic dermatitis (AD) in relation to the concept of self-management.DesignA qualitative study with an inductive approach was performed through semistructured interviews (n=15). The interviews were recorded, transcribed verbatim and analysed with systematic text condensation.ParticipantsYoung adults (mean age 23,4 years) with persistent AD in a longitudinal population-based birth cohort. To capture experience of living with persistent AD (preschool/school-age onset) of different severity (mild to severe/very severe), a purposive selection was performed. In total, 15 young adults were included. Persistent AD (preschool/school-age onset) was defined as dry skin in combination with itchy rash of typical localisation in the 12 months preceding the 16-year and the 24-year follow-ups. Severity was self-assessed using the Patient Oriented Eczema Measure.ResultsDespite having experience of AD since childhood, the respondents expressed uncertainty about treatment and how it affected their bodies. Their uncertainties and feelings affected how they used topical corticosteroids. The respondents emphasised that they perceived availability of healthcare and knowledge about treatment of AD among healthcare providers to be limited. The participants did not state any experiences of support to self-management from healthcare, which affect young adults’ possibilities to take full control of their AD care.ConclusionsYoung adults with preschool/school-age onset of AD are unsure how to treat and manage the disease. One explanation may be insufficient transition process.

Treatment Patterns among Patients with Atopic Dermatitis in Secondary Care: A National, Observational, Non-interventional, Retrospective Study in Sweden

“…In the US, a higher proportion of patients rated their AD as less severe than did their treating clinician ( 17 ). In a qualitative semi-structured interview study, young adults suggested that, despite their AD being a constant in their lives, most had become used to living with the condition ( 18 ). In addition, patients, despite having experience of AD since childhood, may nevertheless feel uncertainty about options for treatment of the disease.…”

Values and Preferences of Patients and Caregivers Regarding Treatment of Atopic Dermatitis (Eczema)

“…Twenty-four studies addressed patients valuing education from clinicians on how to use a treatment. This included verbal communication, written instructions, and demonstrations of how to apply topical treatments (low certainty):…”

“…Twenty-four studies addressed patients valuing education from clinicians on how to use a treatment. This included verbal communication, written instructions, and demonstrations of how to apply topical treatments (low certainty) 12,15,16,20,21,25,27,31,32,36,37,41,43,46,48,49,56,58,61,65,67,[69][70][71][72] : "It would be good if they showed you how to apply the cream, when collecting it for the first time." 41 As a possible solution, initial supportive care and attention could be provided by nurse specialists: "A physician has limited time during a consultation…In situations like this, an additional appointment with a nurse who has time to listen to your story, who is in close contact with your physician, and could potentially discuss any important considerations, would be really appreciated."…”

Living with Atopic Dermatitis as a Young Adult in Relation to Health-related Quality of Life and Healthcare Contacts: A Population-based Study

“…However, the difference was small and might not be considered clinically relevant ( 39 ). One explanation may be that young adults have grown accustomed to living with AD, as shown in a qualitative study from our group ( 13 ) and a qualitative study from England, including young people ( 40 ).…”

“…Most patients with AD are treated in primary care ( 11 , 12 ). Data from our population-based cohort have shown that young adults with AD since childhood had never felt completely asymptomatic and had experienced difficulties in getting help from healthcare ( 13 ). A European cross-sectional register study in adults showed that patients with uncontrolled AD had a greater disease burden than those with controlled AD ( 14 ).…”