Creation and pilot test results of the dermatology‐specific proxy instrument: the Infants and Toddlers Dermatology Quality of Life

Abstract

The pilot test results showed that the InToDermQoL questionnaire has good comprehensibility, clarity, acceptance and internal consistency and well differentiates severity-dependent differences. Further validation of the InToDermQoL during international field test will be performed.

Epidermolysis bullosa‐specific module of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire

“…Based on the analysis of focus groups’ results, two EB specific items that were not mentioned by parents of children with other skin diseases and therefore were not included to the dermatology‐specific InToDermQoL questionnaire were developed. The first question is about problems with defecation.…”

“…In contrast, only proxy instruments for the youngest children who can't provide self‐assessment could be used . Before the creation of the dermatology‐specific InToDermQoL questionnaire investigators had to skip the assessment of HRQoL in youngest patients with EB or use dermatology‐specific instrument that is inappropriate for this age group . Despite it is possible now to assess HRQoL impairment in youngest children with EB by the dermatology‐specific InToDermQoL proxy questionnaire, items on problems with defecation and shoes were mentioned exclusively by parents of EB children and therefore were included to the EB‐specific module of the InToDermQoL questionnaire.…”

The Evolution of Quality of Life Assessment and Use in Dermatology

“…A promising and innovative approach is to create new QoL instruments by international groups of specialists, rather than within individual countries, as in the case of the European KIDSCREEN/DISABKIDS project [31]. The InToDermQoL [23] has had simultaneous creation and validation of items in all participating international centers, helping to avoid the problem of cross-cultural inequivalence.…”

“…This resulted in skipping of the assessment of HRQoL in this age group or attempts to use a disease-specific proxy questionnaire inappropriately as a dermatology-specific measure, and to use a dermatology-specific proxy tool for children under the minimal age limit validated for that questionnaire [21, 22]. The Infants’ and Toddlers’ Dermatology Quality of Life (InToDermQoL) dermatology-specific proxy instrument for the youngest patients (0–4 years) with skin diseases has recently been developed and initially validated [23]. The epidermolysis bullosa-specific module of the InToDermQoL questionnaire was also developed [24].…”

International pilot tests of the epidermolysis bullosa‐specific module of the Infants and Toddlers Dermatology Quality of Life questionnaire

“…It was shown by the literature and our previous study that children may be influenced by teasing, bullying and avoiding by their peers from the age of 3 years old. 1,4 Our present results suggest that almost a half of 3-4 years old children with EB were stigmatized by their peers and may need social and psychological help. To visualize, such patients may be one of the reasons for practical use of the InTo-DermQoL EB-specific module.…”