gms | German Medical Science

Background: Infants and toddlers represent an important population for paediatric dermatoses, with estimated rates in Germany of 17% in 0–2 year-olds and 13% in 3-6 year-olds for atopic dermatitis alone. The manifestation of skin diseases in this age group often results in substantial physical discomfort (e.g., pain, burning), alongside with notable repercussions on social and psychological quality of life (QoL). Such consequences can impede or delay psychosocial development, with potentially lifelong consequences. Hence, the availability of a robust and valid dermatology-specific tool for assessing QoL in infants and toddlers (0–4 years) is essential in both research and clinical practice. Currently, such instruments are only available for older target groups. To fill this gap, the InToDermQoL was developed as a 10-item skin-generic proxy QoL questionnaire, simultaneously in seven European countries [1], [2]. While the German version underwent pilot-testing, a comprehensive psychometric evaluation is still pending.

Objective: This study aimed to evaluate the psychometric properties of the InToDermQoL questionnaire and to gauge the disease burden and QoL of infants and toddlers afflicted with a skin disease, from the perspective of their parents.

Methods: In total, 180 parents of children aged 0-4 years with any skin disease will be included. Parents and physicians fill in a survey on QoL, disease severity, and other sociodemographic/clinical information. Internal consistency, factor structure, convergent validity with validated generic questionnaires [PedsQLTM Infant Scales; PedsQLTM 4.0 Generic Core Scales – toddler version] and disease-specific questionnaires [i.e., Infants’ Dermatitis Quality of Life Index (IDQOL)], and known-groups validity across diagnoses and severity levels will be examined; additionally, 25% of families are invited to fill in the same questionnaires two weeks later to determine test-retest reliability. Data collection will be terminated in April 2024.

Results: So far, 135 parents filled in the questionnaires. In accordance with findings in other language versions², it is expected that the InToDermQoL questionnaire will demonstrate good psychometric properties and discriminate well among different disease severity levels and diagnoses.

Implication for research and/or (healthcare) practice: This psychometric validation of a novel, skin-generic proxy-reported outcome instrument advances the assessment of health-related QoL in infants and toddlers with dermatological diseases from the parents’ or caregivers’ perspective. Its use will contribute to a better understanding of short- and long-term consequences of skin diseases on paediatric patients and their families. The InToDermQoL tool will allow researchers and clinicians to take a people-centred health care approach, and to assess disease burden and care holistically in order to tailor pharmacological and non-pharmacological treatment to the paediatric patients.

Funding: Other funding; Project name: Quality of Life in Young Children with Dermatological Diseases: Validation of the German Infants and Toddlers Dermatology Quality of Life (InToDermQoL)