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Background: Chronic hand eczema (CHE) is a very common skin disease among the European population. It causes itch and pain and, in more severe cases, seriously impairs hand functioning at work and in private life. Objectives: To explore perspectives of people with lived experience on CHE-related problems, wishes and goals. Methods: Following a qualitative approach, we conducted topic-guided interviews in five European countries and applied template analysis to identify recurrent themes among patients with CHE. Results: We interviewed 60 patients in seven outpatient dermatological and occupational medicine clinics in Croatia, Denmark, Germany, the Netherlands and Spain. Five main themes were identified: (1) knowledge about the disease and its course, (2) preventive behaviour, (3) hand eczema therapy, (4) impact on everyday life and (5) attitudes towards CHE and healthcare. Participants did not feel well informed about CHE, especially about causes, triggers and treatment options. Preventive measures were experienced as more or less effective but also cumbersome. Experiences with therapy were diverse. Treatment satisfaction depended on the results and on the perceived support from the treatment teams. Participants found it important to be taken seriously, to receive practical advice, to try out additional treatments or examinations, find new hope and have occupational perspectives. They wished that others could better understand the physical and emotional burden of CHE. Patient support groups were not mentioned. Participants found it important to learn to take care of themselves and accept life with CHE. Conclusions: Due to its annoying symptoms, high visibility and impaired functioning at work and in private life, CHE has a high emotional and social impact. Some people may require support to learn coping with CHE and its prevention. Patients wish for information about causes and triggers. They value physicians who listen to them and keep looking for solutions.

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.

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Zusammenfassung Hintergrund Berufsbedingte Hauterkrankungen treten in vielen Berufen auf. Häufig handelt es sich um irritative und/oder allergische Handekzeme. Zu den häufigsten betroffenen Berufsgruppen zählen z. B. Pflegekräfte und Metallarbeiter*innen. Hinsichtlich soziodemografischer Merkmale (Alter, Berufe, Geschlecht) ist das Patientenklientel insgesamt sehr heterogen. Individualpräventive ambulante und stationäre Maßnahmen zielen u. a. darauf ab, das Selbstmanagement mit der Erkrankung zu verbessern (z. B. Veränderung des Hautschutzverhaltens) und ein erkrankungsbedingtes Ausscheiden aus dem Beruf zu verhindern. Subjektive Krankheitstheorien spielen bei der Erreichung dieser Ziele eine wichtige Rolle, so dass es das Ziel der Studie war, diese subjektiven Theorien unter besonderer Beachtung soziodemografischer Merkmale zu erfassen und zu analysieren. Methode Es wurden 36 leitfadengestützte qualitative Interviews mit Patient*innen einer stationären Individualpräventionsmaßnahme geführt. Die Auswertung erfolgte mittels inhaltlich strukturierender qualitativer Inhaltsanalyse. Hauptkategorien wurden deduktiv anhand des theoretischen Rahmens (Common-Sense-Modell) gebildet, Subkategorien anhand des Materials (induktiv). Ergebnisse Interviewtranskripte von 35 Patient*innen wurden analysiert (Geschlecht: weiblich = 18, männlich = 17/Alter: minimal: 22 Jahre, maximal: 63 Jahre). Dabei ließen sich alle Dimensionen des Rahmenmodells mit verschiedenen Subkategorien abbilden. Die vermuteten bzw. wahrgenommenen Ursachen waren überwiegend komplex. Hinsichtlich der Altersgruppen und Berufe konnten teilweise Unterschiede festgestellt werden. So waren z. B. Aussagen, die auf eine höhere Selbstwirksamkeit in Bezug auf die Kontrollierbarkeit des Handekzems hindeuteten eher bei interviewten Pflegekräften zu finden, als bei den Befragten der Metallberufe. Schlussfolgerungen Die Wahrnehmung komplexer Ursachen spiegelt die oftmals multifaktorielle Krankheitsentstehung wider (z. B. irritative Handekzeme bei atopischer Disposition). Die z. T. vorgefundenen Unterschiede zwischen Berufs- und Altersgruppen verdeutlichen, dass involvierte Berufsgruppen (z. B. Ärzt*innen, Therapeut*innen) bei der Berücksichtigung der subjektiven Krankheitsvorstellungen auch ein Zusammenspiel mit soziodemografischen Aspekten erwägen sollten.