Cumulative Life Course Impairment
The burden of chronic illnesses can accumulate over time: physical and psychological impairments, stigmatization, social exclusion and withdrawal may lead patients to make certain decisions they would not have taken if it wasn’t for the disease. It may prevent them from engaging in particular activities or even choosing a career path and it can make it harder to find social connection and intimacy. These long-term consequences are called cumulative life course impairment (CLCI) – a concept that so far has received little scientific attention despite its far-reaching implications. On this page, you find more information about our work on CLCI in chronic skin diseases.
Background: Chronic skin conditions such as psoriasis and atopic dermatitis (AD) and hidradenitis suppurativa (HS) induce substantial disease burden to the patient, his environment and the health system. Suffering can occur over years or even decades if there is no adequate treatment. A central topic in people-centered health care is the identification of patient needs at an early stage and to prevent cumulating disease burden and irreversible damage to the patients’ life trajectories. Such damage can arise from quality of life losses, decreased personal and professional chance (“missed opportunities”) and a high level of stigmatization. Several concept papers discussed this CLCI approach in relation to skin diseases but it has not yet been put into practice. In particular, there is a lack of empirical data and of methods for the assessment of CLCI to further develop a practical implementation.
Study Objectives: The aim of this project on psoriasis and other chronic inflammatory skin conditions is to develop a specific tool identifying and quantifying the extent of previous CLCI and the risk for future CLCI.
Develop specific tools for assessing the retrospective (lifetime) CLCI as well as the risk factors for future CLCI.
Investigate the concept of cumulative life course impairment (CLCI) in people with chronic skin diseases with a focus on psoriasis, atopic dermatitis and hidradenitis suppurativa
Analyze the current degree of CLCI in large cohorts of patients with psoriasis in routine care based on indicators of CLCI, such as stigmatization, comorbidity and social support, in psoriasis, atopic dermatitis and hidradenitis suppurativa
Systematic literature review
Routine data analysis
Development of two patient-reported outcome tools assessing CLCI
Patients with a diagnosis of psoriasis
Sponsor: AbbVie Deutschland GmbH & Co. KG