02 November 2017

Infants and Toddlers Dermatology Quality of Life (InToDermQoL) – an international dermatology-specific proxy instrument for the assessment of health-related quality of life in children 0-4 years of age

Several skin diseases have chronic course and are difficult to treat. Because of skin lesions and other symptoms patients may have subjective complains and impact on different aspects of their life. Quality of life (QoL) instruments are used to measure this impact. QoL assessment is included in many national guidelines in dermatology. Children with skin diseases also often have negative impact on their life. It was reported that with the help of illustrations and interview forms children are able to assess their HRQoL from the age of 4-5 years. However, younger children may also have severe impact as it was reported in atopic dermatitis by disease-specific proxy instruments. QoL of young children with other skin diseases may also be significantly affected. Meanwhile, reviews of the literature in this field revealed absence of validated dermatology-specific HRQoL proxy instrument to be used in this age group and importance of such questionnaire (1, 2).

Members of the EADV Task Forces on QoL and Pediatric Dermatology were invited to participate and share information about the project in pediatric dermatology units.

After analysis of the literature search results promising and innovative approach to create a new proxy dermatology-specific QoL instrument by international groups of specialists as in the case of European KIDSCREEN/DISABKIDS project with subsequent simultaneous validation in all participating international centers was selected. This method may help to avoid the problem of cross-cultural inequivalence.

We considered that our project ideally suits the requirements to the EADV grants announced by the EADV Project Proposal Review Committee. We have applied for and successfully received the EADV Grant 2015-11.

Focus group work was completed in 7 national centers of the project (Croatia, Germany, Greece, Malta, Poland, Romania and Ukraine). 170 families of children with different skin diseases were interviewed by the project staff at national centers with regard to their perception of QoL issues in the health condition. The highest number of different health-related items was in epidermolysis bullosa and the lowest in molluscum contagiosum. Children with epidermolysis bullosa have significant number of problems that are not typical for most of other skin diseases. We revealed a need of creation of epidermolysis bullosa-specific module and now are working on it. We also hope for cooperation with DEBRA - the worldwide alliance of Epidermolysis Bullosa patient support groups for this.

Country

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Croatia

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Ukraine

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Germany

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Romania

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Malta

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Greece

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Poland

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France

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Denmark

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List of available national language versions of the InToDermQoL questionnaire before the Pilot Test 

Based on focus groups results three pilot versions of the Infants and Toddlers Dermatology Quality of Life (InToDermQoL) questionnaire were created:

  • 11 items for children under one year of age
  • 12 items for children over 1 year of age
  • 15 items for children over 3 years of age

It is easy to recall something during 24-48 hours but some important activities of child’s life may be less frequent. Thus, the timeframe of one week was selected.

Pilot Test of the InToDermQoL is now ongoing. Here parents of children with skin diseases (3 age groups, 3 degrees of severity, both genders) were asked to complete the pilot version of the questionnaire. In addition to filling out the questionnaire, there is short cognitive debriefing session, in which items of the newly developed instrument should be discussed with parents as regards to their comprehensibility, clarity and acceptance.

According to preliminary results most of the parents well understood all questions of the instrument and had no problem to answer it. However, we’ll add some clarifications to make questions even more clear. Primary psychometric tests should also be performed at this stage.

The next step will be international field tests of the InToDermQoL questionnaire.

Creation of the new dermatology-specific QoL instrument which targeted new age group may help to improve results of the treatment, education programs and consultation in children with skin diseases on local, regional, national and international levels. Appearance of reliable instrument for targeted group may also stimulate researches in this field. 

Our working group invites other national centers to join the project! If your center is working with pediatric dermatology patients and you are interested to join, please, contact me: chernyshovpavel@ukr.net

References:

  1. Chernyshov P. Dermatological quality of life instruments in children. G Ital Dermatol Venereol 2013;148:277-85.
  2. Chernyshov P, de Korte J, Tomas-Aragones L, Lewis-Jones S. EADV Taskforce’s recommendations on measurement of health-related quality of life in paediatric dermatology. J Eur Acad Dermatol Venereol 2015;29:2306-16.


Author: Dr P. Chernyshov