gms | German Medical Science

Introduction & objectives: Atopic eczema (AE) is a common and burdensome chronic skin disease. Clinical guidelines suggest an evidence-based, personalized, stepwise treatment approach. However, treatment goals and outcomes from the patient perspective have been frequently neglected. This study aimed

1.

to determine the extent of health-related quality of life (QoL) impairments in different sex, age and disease duration groups,

2.

to identify specific patient needs according to sex, age groups and disease duration,

3.

to examine the associations between sociodemographic characteristics, clinical features, patient burden and the specific needs in routine care for AE.

Materials & methods: Nationwide cross-sectional study in 91 dermatology practices and outpatient clinics. Disease severity was assessed by the SCORAD-Index. Patient burden was evaluated using the generic EQ VAS and the Dermatology Life Quality Index (DLQI). Data on patient needs were obtained using the standardized Patient Needs Questionnaire (PNQ).

Results: Analysis of 1,678 patients (60.5% female, mean age 38.4±15.9 years) revealed a high disease burden with mean SCORAD of 42.3±18.6, mean DLQI of 8.5±6.5 (32.1% had severe QoL impairments with DLQI > 10), and mean EQ VAS of 63.6±22.0. No gender differences were found, but there were significant differences across age (F = 12.42, p < 0.01 for DLQI; F = 4.33, p = 0.01 for EQ VAS) and disease duration groups (t = -3.24, p < 0.01 for DLQI). Specifically, the elderly reported less QoL impairments (DLQI) than adults and emerging adults; and adults presented lower generic (EQ VAS) compared to emerging adults. Patients with AE for more than a year reported more QoL impairments (DLQI) than patients with a recent diagnosis. The patient needs that were most frequently rated as “quite important”/”very important” were: “be free of itching” (92.6%), “get better skin quickly” (84.5%), and “be healed of all skin defects” (82.5%). In general, older people, women and patients with AE for 1 year or less rated the treatment needs as more important. Hierarchical regression analysis showed that sociodemographic characteristics, clinical features and disease burden explained 3%, 2% and 5% of the variance in patient needs, respectively (model summary: R2 = 0.10; F = 6.11, p < 0.01). Specifically, older age (β = 0.16; t = 2.95, p < 0.01), higher severity (β = 0.15; t = 2.81, p < 0.01) and greater DLQI impairments (β = 0.23; t = 3.61, p < 0.01) were associated with patients reporting increased needs related to AE treatment.

Conclusions: Patients with AE show a high number and variety of treatment goals which are associated with individual disease burden. The patient needs varies substantially according to patient characteristics. Identification of patient-specific goals may support personalized, patient-centred care and shared decision making.