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

TY - JOUR

T1 - Development of Measurement Tools to Assess Cumulative Life Course Impairment in Patients with Chronic Skin Diseases

AU - Braren-von Stülpnagel, Catharina C.

AU - Augustin, Matthias

AU - Westphal, Lukas

AU - Sommer, Rachel

PY - 2024/8

Y1 - 2024/8

N2 - 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.

AB - 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.

U2 - 10.1111/jdv.18977

DO - 10.1111/jdv.18977

M3 - SCORING: Journal article

C2 - 36807404

VL - 37

SP - 1626

EP - 1633

JO - J EUR ACAD DERMATOL

JF - J EUR ACAD DERMATOL

SN - 0926-9959

IS - 8

ER -