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

Autor: Chernyshov PV; Department of Dermatology and Venereology, National Medical University, Kiev, Ukraine., Boffa MJ; Department of Dermatology, Sir Paul Boffa Hospital, Harper Lane, Floriana, Malta., Corso R; Department of Dermatology, Sir Paul Boffa Hospital, Harper Lane, Floriana, Malta., Pustišek N; Medical School, Children's Hospital Zagreb, University of Zagreb, Zagreb, Croatia., Marinovic B; University Department of Dermatology and Venereology, Clinical Hospital Center Zagreb and School of Medicine of University in Zagreb, Zagreb, Croatia., Manolache L; Dermatology, Dali Medical, Bucharest, Romania., Salavastru CM; Department of Paediatric Dermatology, Colentina Clinical Hospital, 'Carol Davila' University of Medicine and Pharmacy, Bucharest, Romania., Tiplica GS; Department of Dermatology II, Colentina Clinical Hospital, 'Carol Davila' University of Medicine and Pharmacy, Bucharest, Romania., Kakourou T; First Pediatric Department, Athens University, Aghia Sophia Children's Hospital, Athens, Greece., Alexopoulos A; First Pediatric Department, Athens University, Aghia Sophia Children's Hospital, Athens, Greece., Nasi L; First Pediatric Department, Athens University, Aghia Sophia Children's Hospital, Athens, Greece., Wojciechowska-Zdrojowy M; Department of Dermatology, Venereology and Allergology, Wrocław Medical University, Wrocław, Poland., Seniuta J; Department of Dermatology, Venereology and Allergology, Wrocław Medical University, Wrocław, Poland., Szepietowski JC; Department of Dermatology, Venereology and Allergology, Wrocław Medical University, Wrocław, Poland., Erkens A; Dermatology, Venereology and Allergology, University of Schleswig-Holstein, Kiel, Germany., Fölster-Holst R; Dermatology, Venereology and Allergology, University of Schleswig-Holstein, Kiel, Germany., Sampogna F; Clinical Epidemiology Unit, Istituto Dermopatico dell'Immacolata (IDI)-IRCCS FLMM, Rome, Italy., Chernyshov AV; Department of Cellular Radiobiology, State Institution 'National Research Center for Radiation Medicine of National Academy of Medical Sciences of Ukraine', Kiev, Ukraine., Jemec GB; Department of Dermatology, Zealand University Hospital, Roskilde, Denmark., Esmann S; Department of Dermatology, Zealand University Hospital, Roskilde, Denmark., Mazereeuw-Hautier J; Department of Dermatology, Reference Centre for Rare Skin Disease, Toulouse University Hospital, Toulouse, France., Merlos M; Department of Dermatology, Reference Centre for Rare Skin Disease, Toulouse University Hospital, Toulouse, France., Tomas-Aragones L; Department of Psychology, University of Zaragoza, Aragon Health Sciences Institute (IACS), Zaragoza, Spain., Marron SE; Department of Dermatology, Royo Villanova Hospital, Aragon Health Sciences Institute (IACS), Zaragoza, Spain.
Jazyk: angličtina
Zdroj: Journal of the European Academy of Dermatology and Venereology : JEADV [J Eur Acad Dermatol Venereol] 2018 Dec; Vol. 32 (12), pp. 2288-2294. Date of Electronic Publication: 2018 Sep 14.
DOI: 10.1111/jdv.15229
Abstrakt: Background: Until now, there was no validated dermatology-specific health-related quality of life (HRQoL) instrument to be used in youngest patients.
Objective: To create dermatology-specific proxy instrument for HRQoL assessment in children from birth to 4 years.
Methods: International focus groups, item selection and pilot tests were utilized. In order to avoid the problem of cross-cultural inequivalence, focus group work and pilot tests were planned simultaneously in all national centres of the project. Comprehensibility, clarity, acceptance and internal consistency of new instrument were checked.
Results: The title 'Infants and Toddlers Dermatology Quality of Life' was chosen for our new instrument with the proposed acronym 'InToDermQoL'. Focus group work was completed in seven national centres (Croatia, Germany, Greece, Malta, Poland, Romania and Ukraine). A total of 170 families of children with different skin diseases were interviewed, and a pilot version of the instrument was created. Centres from France, Denmark and Spain have joined the project at this stage. Parents of 125 children with skin diseases filled in the pilot versions of the instrument. Good comprehensibility, clarity, acceptance and internal consistency of the InToDermQoL were confirmed. The pilot test results showed that the InToDermQoL questionnaire well differentiates severity-dependent differences. It was also checked and confirmed during the pilot test that no significant information was missed in the questionnaire. Three age-specific versions of the InToDermQoL questionnaire with 10, 12 and 15 items, respectively, were approved for field tests.
Conclusion: 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.
(© 2018 European Academy of Dermatology and Venereology.)
Databáze: MEDLINE
Externí odkaz: