Development of Measurement Tools to Assess Cumulative Life Course Impairment in Patients with Chronic Skin Diseases

Abstract Introduction Patients with chronic skin diseases suffer from physical, psychological, emotional and social impairments. The overall burden has significant impact on patients' life, contributing to irreversible damage across many domains, known as cumulative life course impairment (CLCI). The aim of this project was to develop instruments which (a) measure persisting CLCI and (b) identify patients at risk for developing future CLCI. Methods We identified key topics that negatively impact life course due to skin disease patient‐reported open item selection. Subsequently, we conducted focus group interviews with patients and experts to conceptualize items and response scales, resulting in two preliminary measurement tools. These tools were tested in a cognitive debriefing before finalization. Results Consecutively, 162 patients participated in the open item selection and indicated the following topics were most relevant to their disease: disease symptoms, risk behaviour, comorbidities, psychological and emotional impairments, physical impairments, occupational impairments, treatment, sexuality, problems with family or friends, everyday life and positive event or decisions because of the disease. In the focus group interviews, patients reported stigmatization, support at disease onset, pre‐existing diseases and age of onset as additional important topics. The cognitive debriefing resulted in minor changes to sentence structure. The final tools included: (1) DermCLCI‐r, which assesses retrospective CLCI, and (2) DermCLCI‐p, which assesses current CLCI and future risk. Each tool consisted of 30 items. Discussion The newly developed measures allow for early identification of CLCI, facilitate adequate dermatological and psychosocial interventions and may contribute to the prevention of CLCI. Further validation studies will be performed.