Illness perceptions of occupational hand eczema in German patients based on the common-sense model of self-regulation: A qualitative study.

BACKGROUND: Occupational skin diseases (OSD) in the form of hand eczema (HE) are a common work-related disease. Illness perceptions as presented in Leventhal's Common-Sense Model (CSM) are important for patients' self-management of diseases. Understanding these illness perceptions is essential for patient communicating. No quantitative or qualitative studies which investigated subjective illness perceptions in patients with occupational HE utilized the CSM as theoretical framework. The Objective of this study is to investigate illness perceptions of patients with occupational hand eczema (HE) using the CSM. METHODS: We applied an exploratory qualitative approach and conducted purposive sampling. Thirty-six patients with occupational HE were interviewed using an interview guide based on the dimensions of the CSM, including coherence and emotional representation. All participants participated in a three-week inpatient program at a clinic specialized on occupational dermatology. One interview had to be excluded before analysis, since one participant's diagnosis was retrospectively changed from ICD to tinea and hence did not match the inclusion criteria. Thirty-five interviews were transcribed verbatim and analyzed. Data was analyzed deductively and inductively using qualitative text analysis. MAXQDA 2018 (Verbi, Berlin, Germany), a software for qualitative data analysis, was applied for coding and summarizing of results. All dimensions of the CSM were explored for occupational HE. RESULTS: Several sub-categories could be identified. Participants named a variety of causes in different areas (e. g. external irritants and other hazardous factors, psycho-social factors, allergies, having a 'bad immune system' or lifestyle). The great impact of the disease on the participants' life is shown by the wide range of consequences reported, affecting all areas of life (i. e. psychological, physical, occupational, private). Considering coherence, an ambivalence between comprehensibility and non-comprehensibility of the disease is apparent. DISCUSSION: The complexity of illness perceptions presented in this paper is relevant for those involved in HE patient education and counseling, e. g, health educators, dermatologists, and, occupational physicians. Future research might further investigate specific aspects of illness perceptions in patients with occupational HE, especially considering the complexity of coherence and overlapping dimensions (i. e. emotional representation and psychological consequences).

Which outcomes should be measured in hand eczema trials? Results from patient interviews and an expert survey.

BACKGROUND: Hand eczema (HE) is a common skin disease characterized by itch, pain and visible skin changes such as fissures, erythema and vesicles. It is not yet clear which outcome domains are most important for patients. The Hand Eczema Core Outcome Set (HECOS) initiative is developing a consented set of core domains and suitable measurement instruments for the future application in all HE trials. This includes an online Delphi survey about core domains, which requires a 'Long List' of all domains that might be important to measure. OBJECTIVES: To compile a 'Long List' of candidate outcome domains for therapeutic HE trials with suggestions from patients and experts. METHODS: First, 60 patients with chronic HE were interviewed at seven study sites in Croatia, Denmark, Germany, the Netherlands and Spain. Patients were asked about domains that were important from their perspectives. Second, 185 HE experts were invited by email to complete an online survey. With an open question, they were asked to suggest up to six domains. RESULTS: Suggestions were provided by 58 patients and 82 experts. Most patients and experts suggested to measure the domains 'signs', 'symptoms' and 'HE-related quality of life'. Specifically, >25% of patients said that less itch, pain or fissures indicated a successful treatment. Among experts, >25% suggested 'itch' and 'ability to work' as core sub-domains. Further outcomes from the domains 'HE control over time', 'patient-reported treatment experience' and 'skin barrier function' were mentioned. CONCLUSION: 'Itch' was rated high among patients with HE and professional HE experts. While patients emphasized fissures as important, experts underlined the ability to work. This investigation allowed us to define a 'Long List' of 7 candidate outcome domains with 58 sub-domains. From this list, a panel of stakeholders will select core domains during an online Delphi survey.