The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Slovene language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach’s alpha, interscale correlations, test–retest reliability, and construct validity (convergent and discriminant validity). A total of 100 JIA patients (7.0% systemic, 47.0% oligoarticular, 22.0% RF negative polyarthritis, 24.0% other categories) and 120 healthy children, were enrolled. The JAMAR components discriminated well healthy subjects from JIA patients, except for the Health-Related Quality of Life, Psychosocial Health subscales. All JAMAR components revealed good psychometric performances. In conclusion, the Slovene version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and clinical research.
Povzetek: Zdravstveni posegi so lahko za otroka zelo stresna izkušnja. Negativne izkušnje s pogostimi bolečimi posegi lahko povzročijo pomembnejše dolgoročne psihološke posledice. Zato je poleg farmakološke priprave otroka na zdravstvene posege pomembna tudi uporaba različnih kognitivno-vedenjskih tehnik, ki pomagajo blažiti distres in jakost zaznane bolečine. Ni pa standardne metode, ki bi bila za vse otroke enako primerna. Izbira le-te mora temeljiti ne le na invazivnosti in trajanju samega posega, temveč tudi na poznavanju dejavnikov, ki vplivajo na doživljanje bolečine, ter na osebnih značilnostih otroka. Izsledki raziskav, v katerih so proučevali učinkovitost različnih psiholoških pristopov pri pripravi otrok na (boleče) zdravstvene posege, do sedaj najbolj potrjujejo učinkovitost kognitivno-vedenjskih ukrepov in nagovarjajo k njihovi uporabi v klinični praksi.
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