According to research published in the European Academy of Dermatology and Venerology, long-term control of eczema is a “multi-faceted construct” that requires attention to disease activity, treatment, and management, as well as attention to psychosocial factors. Through an online approach, researchers were able to engage multiple stakeholder groups to “inform consensus meeting discussions.”
Researchers used this qualitative study to investigate what long-term control of eczema means to patients, caregivers, and clinicians. Researchers utilized online focus groups and an online survey to explore the experiences of patients and caregivers in the United Kingdom, United States, the Netherlands, France, Sweden, and Japan. Included in the focus groups were adults with eczema as well as parents, legal guardians, or caregivers of children with eczema. All members of Harmonising Outcome Measures for Eczema (HOME) were invited to participate. Framework analysis was used to sort data into key themes using familiarization, identification of theoretical framework, indexing, charting, and mapping and interpretation. Researchers also conducted an international online survey to gather views of clinicians.
A total of 81% of the 62 HOME members who completed the online survey were clinicians, in addition to methodologists/non-clinical researchers (n=5) and patient representatives (n=7). Eczema control was characterized by respondents as multifaceted, with effects on psychological, social, and physical functioning. Long-term control of the condition was described by patients, caregivers, and clinicians as a reduction in disease activity, most often the level of itch, pain, and redness. The terms frequently used by clinicians were reduced intensity, minimal signs and/or symptoms, or minimal disease activity. The concept of “flares” was not seen as universally useful, because of the inconsistency in correlating with disease activity. Patients and caregivers often reported that the emotional impact of uncontrolled eczema resulted in high levels of distress. Clinicians reported that this had an impact on the patient’s quality of life.
Researchers found that there is a trade-off between having a standardized method for measuring long-term control assessed by independent observers vs control of everyday experience that only patients or caregivers can assess.
This study design is potentially limited by variability in the strength of responses received through online data collection. The views expressed may not be representative of the entire HOME membership, as only 25% participated.
To the authors’ knowledge, this is the first international qualitative study to assess what long-term eczema control means to patients, caregivers, and clinicians. Implementing the core outcome set will allow for standardization of measures across eczema clinical trials and allow for synthesis and comparison from multiple trials.
Disclosures: All study authors are members of the HOME initiative. Dr Barbarot reports receiving research grants from Pierre Fabre Laboratory and Foundation pour la dermatite atopique, personal fees from Bioderma, Laboratoire La Roche Posay, Sanofi-Genzyme, Leo Pharma, and Abbvie, as well as non-financial support from Abbvie, Novartis, and Janssen.
Howells L, Thomas KS, Sears AV, et al. Defining and measuring “eczema control”: An international qualitative study to explore the views of those living with and treating atopic eczema [published online February 5, 2019]. J Eur Acad Dermatol Venereol. doi: 10.1111/jdv.15475